How is Luke Doing? Great!

Thank you for your prayers, Luke's surgery went great and he is doing so much better

2012-01-31T01:08:00.000-08:00

We really appreciate all your prayers for Luke!! His surgery went great, the Dr. was able to do the Laproscopic procedure. Praise God. The surgeon told us after it was all over that he really felt like we made the right decision in choosing to do this surgery for Luke, I guess his gallbladder looked like it had some adhesions on it, perhaps showing that he had some trauma which could of been causing him pain. He also mentioned that he had one of the smallest bile ducts leading into his gallbladder that he had ever seen, once again confirming the fact that we had made the right decision. The surgeon was pleased to see that Luke doesn't have any scarring or granulation from past surgeries, I mentioned that perhaps all the Hyperbaric treatments that Luke has had over the years have helped keep him scar free.

Here's Luke meeting the Mariner Moose shortly before he was discharged from the Hospital.

The only major concern after the surgery was the fact that we couldn't get Luke to wake up after it was all over. I waited for awhile to be called back to the recovery room and finally asked to be taken back there. I sat by Luke for 3 hours waiting for him to wake up, I'm pretty sure they over medicated him. I kept telling the nurses in the recovery room that Luke can not be woke up when he is over tired and since he had not been sleeping well the last few weeks he was exhausted. Thankfully the head nurse decided to call the floor to see if we could transfer him over to his room, they agreed so we finally made it to his room 4 hours later. He slept another hour or so before finally deciding he would wake up.

Here's Luke right after surgery in the recovery room sleeping away

Once we got him settled into his room and answered all the registration questions I went to grab a bite to eat in the cafeteria since I had been up all the previous night and had only had a bagel that morning around 5 am, I was famished. Of course while I was gone he decides to finally wake up after being asleep for over 6 hours. I stayed with him that night in the hospital getting him back to sleep shortly after 1 am when I finally could not keep my eyes open another second. I slept like a rock on what felt like a rock, those hospital chair beds are very hard, until the surgeon came in the next morning during his rounds. He was pleased to see that Luke was doing so well and happy to hear that he had only had to have two doses of ibuprofen to keep the pain away. We went home that day around 3:30.

Here we are shortly after being taken to his room on the Med/Surg floor. I had to have a picture taken with me in my Mom's of near drown group shirt, a lot of my nd mom friends were all wearing their shirt that day to show their support of Luke being in the hospital.

We were blessed to be at Mary Bridge the day that some of the Mariner's, along with the Mariner Moose and Rick Rizz the voice of the Mariners came to visit the hospital. Luke seemed to enjoy meeting the players and seeing the Moose. I think I was more excited about the fact that we would be leaving once we got back to the room to be discharged. Though the care at Mary Bridge is always great, there's no place like home.

Finally he's awake, I was able to get him up for a short time before they began his constant feeding schedule. The one objective we had to accomplish before he could be discharged was to be sure he could tolerate his feeds so that he would not become dehydrated when we went home.

After dinner I sat down to read Luke and Lily a book and just couldn't keep my eyes open any more I was past exhausted. I went to bed and went to sleep early while Gordy took over the first shift of the night for a change. Thankfully Luke is doing so much better lately at night and during the day. His need for extra oxygen has greatly diminished, his heart rate is back to normal and the tremors he was having are almost completely gone. Which once again has reconfirmed in my head they were caused by the fact that he was in pain and discomfort, which breaks my heart to think that he was suffering for so long. We are still going to take him in on Monday to have his EEG done to be sure he is not having seizures.

Here's Luke taking a picture with Michael Saunders the Center Fielder for the Mariners.

I'm looking forward to getting Luke back into the Hyperbaric chamber later this week, hoping that it will help the healing process along with the scars he has from his surgery, also hoping it will help with his sleeping problems and his lungs. Next week he has his EEG scheduled on Monday and then the next Monday he has his surgery and pulmonology follow up. Then to top off all those appointments his Pediatrician wants me to make a orthopedic appointment to follow up on his hips, which seem to be dislocated right now, I'm definitely not looking forward to that appointment. Never a dull moment that's for sure!

Once again thanks for your prayers, they were so appreciated and needed:-)

Love in Christ,
Luke's Mommy Sue

Luke needs your prayers today, he has surgery this morning at 8 am

2012-01-25T01:39:00.000-08:00

We sure would appreciate your prayers today while Luke is in surgery. We have to be at the hospital at 6 am for his 8 am surgery to get his gallbladder out. I mentioned in a previous post a few months back that during an ultra sound Luke had to check out his digestive system they found huge gallstones. The surgeon said that many people live all their lives with gallstones and never even know they have them until they have one become dislodged at which time they can cause horrible pain. We discussed the pro's and con's of Luke going through this surgery and decided that we would rather get his gallbladder out than have Luke experience a gallbladder attack and not know he is having one because he can not communicate with us that he's having pain in his abdominal area. We realize that anytime Luke is sedated is risky for him as he already struggles so much with his respiratory system and that is why we were hesitant to schedule this surgery.

* PLEASE pray that the surgeon will be able to do a Laparoscopic procedure instead of having to open him up completely. The only reason why he may not be able to do the Laparoscopic procedure is because of Luke's previous surgeries, he may have scar tissue that will be challenging to go through.
* PLEASE pray that Luke will make a speedy recovery, the Dr. said that we would only need to be in the hospital one night, though we might have to stay an extra night if Luke has any complications or is unable to tolerate his feeds.
* PLEASE pray for Luke to not experience great pain after his surgery is done, the less he is sedated the better he will breath.
* PLEASE pray for the kids at home, they are already dreading another hospitalization, just tonight Lily asked me if I was sure that I wasn't going to be there for a week again, all the kids get very emotional and stressed when Luke has to be in the hospital.

Luke has been doing so good the last few days, hardly needing any extra oxygen, looking good, smiling all the time and jabbering more then we've ever heard before, PRAISE GOD!! I keep thinking to myself what a dirty trick to play on him, while he's doing great we are going to put him through another surgery, another painful experience, another stressful time in the hospital, another time away from his home . . . I told him tonight that we were going to the hospital in the morning but I just haven't been able to bring myself to tell him what's going to happen yet, though I will in the morning. I know he will need to know what is going to happen to him so that when he wakes up after the surgery he will understand why he is in pain. I just hope and pray he will be able to comprehend what he is going to experience.

Once again thank you for your prayers, they are what make this journey livable!!

Luke's Mommy Sue

WOW, What a Week!!

2012-01-23T23:32:00.000-08:00

Have you ever had a week that was so unbelievable challenging you wonder how you were able to get through it?? That is exactly what we were thinking last week.

Sunday 1/15/12 - Our snow week began with waking up to a dusting of snow from the night before, not too much to begin with just enough so that the kids needed to wear their boots to church in the morning. I stayed home with Luke that day so that Gordy could go to church. Luke seemed to be doing a little better now that we were finally cutting back on some of the new medications we had begun the week before. I had planned to go to church in the evening but when I left it was snowing again and the roads were getting icy so I went back home.

Here's Luke and I hanging out while everyone else is at church

Monday 1/16/12 - We woke up to about 10 inches of snow, that's a lot for us! Gordy decided to work from home that day. The Rodriguez family invited the kids over to go sledding on their HUGE hill behind their home, so the kids, Gordy and I shoveled off our driveway and Gordy took them over there to have some fun. The amazing thing was that none of the snow melted that day in fact it just got colder as time went by.

Tuesday 1/17/12 - We woke up once again to it snowing. Gordy decided to telecommute from home again, so blessed that he is able to do that. Luke had a neurology appointment that day and I asked Gordy if he would take us to the appointment because though I can drive in the snow, I don't really like to. We went to our appointment and found out that the Dr. agreed with me, he doesn't think that the twitching that Luke has been doing is related to seizure activity, so he ordered a EEG to be sure, which we scheduled for February 6th. Thankfully the snow stopped coming while we were out and about and didn't come back again until that evening, along with more ice.

Wednesday 1/18/12 - It was amazing to wake up and see that none of our snow had melted. Amy woke up that morning with horrible pain in her back, she had hurt it the previous day at the YMCA. It was heartbreaking to see her in so much pain. Gordy once again worked from home because there was no way he was going to get to work as the roads were covered in ice. We all stayed home that day, the kids didn't even get outside to play as it was too cold.

Can you see the huge tree that had fallen over in front of our library, that is what it was like all through out our area, tree's and limbs blocking so many of our roads.

Thursday 1/19/12 - We were woke up to the phone ringing that morning, my sister Cindy was asking if she could come over earlier than normal because they had lost their power and they were cold, of course we said they could come. Amy was still in horrible pain so we decided that we needed to get her into the Dr. to have her back checked out. It was very weird to be one of the only people in the waiting room at the Group Health clinic. On our way home I got a call from Gordy saying we lost our power. I called my parents to ask them if they still had power and thankfully they did. We packed up all Luke's medical supplies, which is no easy task and enough clothes for two days and headed over to my parent's home. While I got us all settled into their home, Gordy ran to Papa Murphy's to pick up some pizza's you see it was my niece Janell's birthday so we decided to have a spur of the moment birthday party for her that night. Thankfully my parents didn't lose their power until the pizza's were all cooked. My parents are blessed to live next to some of our most wonderful friends, who happens to own their own electrical company. Needless to say they are all set with a generator to power their home during power failures, they were so sweet to run over a extra long extension cord so that we could still have power for Luke's machines to run that night. Shortly after we lost power we heard a horrible cracking sound and realized that a huge tree in my parent's yard had split and the a huge branch had fallen on both my sister's car and our van. We were sickened to see that branch had gone straight through our windshield, through our dash and came out underneath it. More drama and adventure, the kind that we definitely could of done without. Thankfully my parent's power came back on and they didn't lose it again.

The limb that went through our van windshield

Friday 1/20/12 - I woke up exhausted because Luke decided that he didn't want to sleep at Grandma and Grandpa's home, so needless to say the stress of the week and the sleepless nights continued to take a toll on me. We kept hoping that our power had come back on but no such luck that day. Gordy had called our insurance company about our van the night before and we had it towed away in the evening of that day. We were blessed once again by our good friends, Juan and Spencer who went over to our home to dig out our big blue van, our good friends the Hohns let us use their van to go get it, we brought back some of the stuff in our fridge that wasn't going to make it and grabbed a few things we needed from home and settled in for another night at my parent's.

Saturday 1/21/12 - Gordy woke me up with the good news we had power again, so he went home to be sure the heat was on and things were good for us to go home. We loaded up all our stuff, once again no easy task and went on home with just enough time to get our laundry sorted and our first of 10 loads of laundry going. I took a quick shower and we headed out the door to go to Seattle to help Daniel and Sarah move into their new apartment. Daniel began a new job right downtown in Seattle so they decided to move close enough to his job that he could either walk or ride his bike to work. We finished moving them in around 6 pm, they fed us pizza and we got home that night around 8 pm. All of us wiped out from our stress filled week.

Me in the U-Haul downtown Seattle. I completely moved all the items in the truck to the front for others to carry into the apartment building, a nice way to burn off some calories.

Sunday 1/22/12 - We still had snow on the ground, which is so rare for us to keep our snow this long. Our neighborhood looks like a hurricane hit it we have so many tree's down along with many massive branches littering our road sides. Gordy stayed home with Luke and I made it to church for the first time in over a month. After church we had a clothes folding party, haha, then I barely gathered up enough energy to get to Costco for a much needed food shopping excursion.

Poor Luke this is what happens when his sister Lily decides that she is going to fix up her brother's hair, don't worry it didn't stay there long.

Monday 1/23/12 - I decided that I was going to walk again, as I haven't gone for a walk in almost two weeks, I think the longest I've gone without walking in a whole year. We still have snow on the ground but most of the roads were good enough for me to walk on, I went 3 1/2 miles, if felt so good to be out there once again. Once I got home and showered it was time to take Luke to his pre-op appointment. He is scheduled to get his gallbladder out this Wednesday. I would say the best news I've heard in a long time was the Dr. saying that Luke should only be in the hospital for one to two nights, I had been told previously it was at least a 3-5 day hospital stay. That is of course if everything goes according to plan.

Luke and I waiting for the surgeon to come in for our pre-op appointment

Well there you go, once again a way toooooo long blog post. I'm sure I will be writing again soon to let you know about Luke's surgery. Please pray that Luke will stay healthy so that we can get this surgery done with this week.

Thank you,
Luke's Mommy Sue

To go to the Hospital or not that was our huge dilemma this week! Finally ending up in the ER on Thursday night

2012-01-15T11:29:00.000-08:00

Here's Luke right after we arrived at Mary Bridge Hospital ER Thursday night, don't know if you can tell how blood shot his eyes were and see that he is on oxygen down to 2 liters at that time.

Gordy and I have come to the conclusion yesterday that Luke has started way too many new medications this week, you see the problem with that is the fact that we are not sure what is helping and what is making things worse for Luke.

As mentioned in my last post we went to the Pulmonologist on Friday January 6th, at that time he agreed to take Luke off the huge dose of Bactrim he was on and then suggested we start Cipro on Monday. We were hoping that once we took Luke off the Bactrim that the high heart rate he was dealing with and the jerking that he started while on that med would go away. But no he was still dealing with the constant jerking. That Dr. assured me that the jerking didn't look like seizures to him, he said that it was looking like someone jerking as they were falling sleep, I thought that was a reasonable explanation since it stopped when he went to sleep.

On Monday I thought perhaps a steroid would help Luke, knowing in the past it has helped him get over some pretty nasty respiratory bugs before. So I went down to the pharmacy to pick up his Cipro and waited two hours for the Dr. to put in an script for Predilisone. That night we began those two medications along with the current ones he was taking his Atrovent and Flovent puffers and antibiotic TOBI nebulizer treatment. That night was actually pretty good, one of the best we have had recently.

Tuesday Luke seemed to be doing a bit better, but he was still jerking constantly and still on constant oxygen, but seemed a little better. I actually felt ok about leaving him with Amy for awhile. I went up to meet my good friend Jean for lunch. Jean is my friend who lost her daughter Annie last March, we have a lot in common in the fact that we both had 7 children, both had children who have suffered an anoxic brain injury. I was blessed by her encouraging words, knowing that God has carried her through the pain and grief of losing her daughter last year and yet she still takes the time to meet and assure me that she prays for Luke and our family on a daily basis. After meeting her for lunch I went to a homeschool used book store and spent an hour there picking out some new grammar books for the kids. Thankfully my mom has decided to start tutoring the boys in grammar, what a HUGE relief that is for me!

Tuesday night wasn't so good, back to lots of secretions, suctioning and alarming, I was up all night again. Wednesday morning I was thankful for the fact that my sister Cindy came over to get Luke up and ready for the day so that I could get a few hours of sleep. I was in constant uneasiness about Luke and the fact that he continued to jerk all the time. That afternoon I decided to call a few of Lily's friends to see if they could come over on Thursday for a fun very belated girl birthday party, thankfully they were able to fit that into thier schedules.

Wednesday night was a little better and I was able to get to bed by 1 am the earliest that I can remember going to bed in over two weeks. When I woke up Thursday I should of felt more refreshed but no I was still exhausted, but I knew that I needed to get up to get the house ready for Lily's friends. That day I was in a quandry to know what to do, I was so stressed by the fact that Luke still was jerking constantly and now seemed to be puffy and in pain, heart rate was soaring and a new problem of him being constipated, this was a first for Luke as he is usually very regular in that area of his life. I e-mailed his Dr. explaining all those things and he called me back a few hours later telling me that he thought I needed to take Luke into the ER. I asked him if I could wait until after Lily's birthday party and he said that would be ok. Lily had so much fun playing dress up and putting on makeup, playing with dollies and running around outside. I took them to Chuck E Chesses that night her first time there for a birthday party. Though I was feeling stressed knowing that I was needing to get Luke to the ER.
I took Luke into the ER around 8 pm and he was almost immediately taken back to one of the rooms there, even though they were packed that night. The first Dr. that came in immediately freaked out saying that Luke's jerking was seizures he was not very happy when he found out that he'd been doing that for a few weeks. He brought back the Head Dr. and they almost immediately put in an IV to give him some medication to get his jerking to stop. I was still not sure that Luke was seizing in the fact the jerking would stop when he relaxed or slept. Long story longer they were going to admit him in the hospital that night but I said that I was perfectly comfortable with taking him home with the new medications that they gave us for him. After taking his blood work, x-raying his lungs and checking his urine, which all turned out to show no new infections, Praise God, they let us leave around 3 am that morning. I climbed into bed about 4:30 absolutely exhausted.

Luke slept most of the day on Friday and actually seemed to be doing better the jerking had stopped most of the day, but that night was a nightmare one of the worst nights ever. We are not sure if or what new medication was causing his horrible breathing and problems that night. I ended up having to hold him all night just so he could breath ok. I sat all through out that night wondering if I should take him back to the hospital. I finally climbed into bed at 7 am and both he and I slept most of Saturday. That is when Gordy and I decided that we need to figure out what is causing these breathing problems, so we've decided to start cutting medications until we figure out which one is causing the problems. A balancing act that is dangerous but needed, because we are desperate for answers.

I would say one of the most frustrating part of this whole week is the fact that Luke doesn't have one Dr. who would really knows how to determine what medication is causing the most problems. Medications always have pages of horrible side effects and more pages of what not to mix with what and I wonder who is making sure we are mixing two medications that is causing the problems. Bottom line we need prayer, prayer for wisdom, prayer for the jerking to stop forever, prayers for the need for constant oxygen to go away, prayers for wisdom, prayers his heart rate to stay down to a healthy level, prayers for a miraculous healing!!

Thank you for your prayers,
Luke's Mommy Sue

PS Once again I realize this is a really, really, really long post but please keep in mind this my journal of Luke's journey, one that I want to keep up to date, one that I choose to make public, one that I hope continues to bring prayers our way and one that I hope you enjoy reading.

Chosing to TRUST God, on the good days and the really bad days, definitely not easy but so worth it!!

2012-01-06T22:01:00.000-08:00

After agonizing over whether I should take Luke into his Pulmonologist for his current breathing issues or his Gastronologist because of the fact that he seems to be throwing up all the time or his Neurologist because of the constant twitching that is going on or just back to his Pediatrician. I decided to call his Pulmonologist first and Praise God he was able to see him this afternoon.

In a nutshell his Pulmonologist basically said that Luke has just caught a nasty bug and that he just needs to get through it. He switched up his antibiotic and added one more neubulizer treatment and told us to add as many vibration vest treatments that we can get in through out the day. He said that if we can get his secretions to settle down than he will stop gagging and that his twitching is most likely caused by the fact that he is so worn out his body is just severly exhausted. He said that Luke is definitely hospital material, but because he trusts us to give him great care at home we can continue keeping him home unless he get's any worse.

To be honest I was ready to take him into the Hospital today, thinking that is what was probably going to happen. I just don't know how many more nights of absolutely no sleep I can take. The only reason I've been able to make it through these last few weeks is because of Natalie and Cindy coming over some of the mornings to help get Luke up and ready for the day and because Gordy has had to take off a few Luke day's so that I can get a few hours of sleep in the morning hours. I will be honest in saying that I HATE sleeping through the morning, I hate the feeling that half the day is just about over when I'm climbing out of bed, but I realize that without those few hours of sleep each morning I would probably collapse from exhaustion.

One of the biggest bummers in all this is that poor Gordy has also been under the weather with coughing, his allergies are horrible this year. In fact he finally made a Dr. appointment today to go see if there is anything else they can do for him to give him some relief from his constant coughing attacks. His Dr. said that his asthma is going crazy because of his allergies and prescribed some more meds to help him get through this season. Bottom line is he has needed to sleep at night just so that he can get enough strength to work during the day, that is why I've ended up taking all the nights lately. I don't think I've gone to bed before 4 am since Dec. 24th.

Earlier today I was going through one of those moments when I began to wonder why God allows Luke to suffer so greatly, why He continues to allow our family to be under such great attack. I know that God is able to heal, I know that He hears our cries when we pray to Him, I know that I have faith to believe that He is able to work miracles, I've seen them happen! So why, why, why does He not seem to hear my prayers for relief from these trials that we seem to face day by day??

Can I be honest to say that I even question on some days whether He really cares, if He really is listening to my cries of desperation or if knows that I need His healing touch for Luke and our family??? Then I make a call to my mom for prayer, she is one of the biggest prayer warriors I have in my life and she shares with me a devotional that she had been reading just this morning about the fact that God does hear our cries and He will answer us in our time of need, we just have to continue to trust Him and to know that He will carry us when we don't have the strength to go on, we just have to be willing to allow Him do that for us.

It all goes back to the big TRUST issue for me, do I TRUST God on those days and nights when I am too weak to go on another minute, do I TRUST that He knows what he is doing in my life, do I TRUST that He loves Luke more than I do and He will bring Him comfort during those times he seems to be suffering so much. It's always seems to come down to that simple question for me do I really TRUST HIM?? I can truly say that I do TRUST Him, I don't always understand why, but I do TRUST HIM, because I know that He loves me so much, I feel His love and His peace wash over me when I take the time to really TRUST Him. I'm thankful for God's presence in my life, I really don't know where I would be today without Him helping me to get through this time in my life.

I hope and pray that you too will accept the fact that Jesus loves you so much and He is waiting for you to accept him into your heart and waiting for you to ask Him to help you to get through that tough thing that you are going through in your life. I pray that you too will learn how to really TRUST God during your time of greatest need, He's waiting with arm's open wide for you to come to Him with your problems and heartache's, won't you please TRUST Him, you'll be glad you did!

Love you so much,
Luke's Mommy Sue

Double The Blessing, Double The Fun!!

2012-01-05T00:59:00.000-08:00

Here are Natalie and Sarah on Christmas morning holding up their new baby sleepers, which say "I Love Mommy"

We have great news to share with y'all today, Luke is going to be an Uncle!! Natalie and Josh are going to have a baby around July 1st and Sarah and Daniel are expecting around July 24th. To say we are excited is a huge understatement. I have known for the last few months that Natalie was pregnant but was under strict instructions not to tell a soul, of course she wanted to announce it to the world first. When we got home from our cruise we had a surprise call from both Daniel and Sarah asking us if we could meet them for dinner the next night at which time they shared with us their wonderful and surprising news.

I'm so excited to be a Grandma, it's going to be so much fun to spoil my grandchildren. I keep thinking that next Christmas will be totally different with new babies crawling around at that time. Yep, we are all feeling very blessed today:-)

Here we are on Caroling and delivering our annual plate of cookies to some of our neighbors on Christmas Eve.

Love in Christ,

Soon to be Grandma Sue

PS Here's a quick update about Luke, he is still needing your prayers, though he has gotten a tiny bit better, he is still struggling especially at night to keep his oxygen numbers up. He's also had some weird twitch happening lately, his whole body keep moving constantly if he is awake. I put a call through to his Neurologist today, hoping to hear back from them tomorrow. I finally bit the bullet and scheduled his surgery to have his gall bladder out on January 25th, he should be in the Hospital at least 3 - 5 days for that surgery. PLEASE pray that all goes smoothly during that surgery and that he will have a speedy recovery.

Happy 2012 I Hope And Pray This Year Brings Many Miracles!

2012-01-01T04:28:00.000-08:00

It's 4:30 am on January 1, 2012, yep I'm still up, haven't gone to bed yet. Luke keeps coughing, alarming, coughing, and alarming, so I keep running back to his room to suction him and just when I think I'm finally able to go climb into bed, he cough's and alarms again. It's a vicious cycle, the more I suction him, the more he needs to be suctioned, but if I don't suction him he struggles to breath as he's full of major secretions tonight. I too have been in a horrible cycle lately of not being able to sleep at night, I can't remember the last time I was in bed before 4 am. Even though tonight is so rough, I do know that he is getting better believe it or not, he's not needing anywhere near to the great amount of oxygen he was needing a few nights ago.

This past week has been very challenging to say the least! I guess I could say this past month has been very challenging, then again I know I could say this past year has been extremely challening at times. When I stop to think about 2011 it brings to mind many good memories, but it also brings many horrible memories. As most of you may recall Luke began the year spending a week in the hospital close to death with pneumonia, after that week he has struggled off and on for the rest of the year with many more cases of pneumonia. In April he was diagnosed with Bronchialectasis, which is the widening of the bronchial tubes, at that time his Dr. told us that he would probably need to spend more time in the hospital and eventually end up with a trache. Thankfully we haven't been back to the hospital, not that it hasn't been suggested quite a few times, but we have chosen to keep him at home during those times of major sicknesses because even though it is very hard on me, it's definitely easier on Luke and the family to keep him home where he is so much more comfortable.

The other night we were playing a game and I was complaining a bit because of a move that Amy made that basically made it so that there would be no way that I could win the game, I was not happy. If you know me at all you know that when I play a game I play to win, I've always been a bit competitive, some of my family and close friends would say that I'm very competitive! That said, I asked my family if they thought I was a complainer and they all said that I do complain if I'm losing while playing games, but they didn't think I complained much outside of playing games, though they didn't say that I didn't complain ever.

I've been thinking about the bad habit of complaining since that night. I know that I don't enjoy being around people that complain all the time and I sure don't want to be known as a complainer, so I've decided that I'm going to try really hard to be better about not complaining at all. It's so easy to feel sorry for myself, especially when I don't get enough sleep and it is usually when I'm tired that I complain the most. To be completely honest I find that I complain to myself in my mind, more than I express those complaints out loud for all to hear, that is the dirty habit that leads me often to a place of self pity and depression at times. With God's help I'm determined to make a change in my thoughts this year, by trying not to complain outloud or to myself, this is just one of the many new year resolutions I'm making to myself this year.

I hope and pray that this year will be a year of great miracles, that is not just words I write but it is something that deep down inside me I have the faith to know God can do!

Love in Christ,
Luke's Mommy Sue

Erk, Erk and Double Erk!! I'm wishing I would of blogged sooner when I had good news to share, because now it's not good!

2011-12-30T02:24:00.000-08:00

I am kicking myself for not posting earlier, because I desperately wanted to tell you about the great reports we heard at the Dr. appointments that Luke went to a few weeks ago. From his rehab Dr. we heard, "wow, I can't believe how alert Luke is today," and "he is looking great." You could tell that this Dr. was totally amazed at the fact that taking Luke off baclafen his muscle relaxant had a huge impact on Luke life, he is now so much more alert, stays awake all day long instead of taking naps all day long and his muscle tone issues have not changed at all if anything perhaps it is a little better.

Luke got to see Santa at the Mary Bridge Clinic before his rehab Dr. appointment

I then wanted to share with you the good news that we heard from his pulmonologist, things like "his lungs sound great today" and "he's looking really good." I can't remember the last time I've heard a Dr. say his lungs sound great!
And last but not least it was exciting to hear his PT say, "I heard Dr. C say, "Luke is looking really good" and "he is so much more alert", music to my ears.

Then on December 17th Luke made it through his first night since July 1st without needing any extra oxygen at night time, we were shouting hallelujah that day. But alas this didn't last long the next night he was back to needing a little bit once again. And as the month progressed Luke seemed to be getting sick again, I really wanted to take him to see Santa feed the sharks at our local Zoo, but thankfully decided at the last minute that wouldn't be good for him, that was definitely the right decision as it was freezing cold out that night and it was so crowded it would of been nerve wracking to think of all the germs that he would of been exposed to that night.

We then thought that he was getting sick on December 23rd, but was thinking perhaps he had just caught the nasty cold/flu that Lily and Isaiah were sharing with each other, the sickness that had me take Lily to Urgent Care on Christmas Eve because she was crying that her ears were hurting so bad. Sure enough she had her first ear infection, the Dr. that night told me it looked so bad that if an adult had that same infection they would of been calling an ambulance to come pick them up because the pain would of been horrible. Luke had another rough night, that night though it was a tiny bit better than the previous one, therefore I thought whew he seems to be getting better, but no it was just God's gift to me and our family to allow him to be ok on Christmas day.

I debated about taking him into Urgent care all day on Monday, but decided that he didn't seem sick enough to warrant a long day spent there so I decided to give him one more day. That night was a nightmare night filled with constant suctioning and no sleep for me. The next day I once again thought I would take him into the Dr. but once again he seemed to be doing better through out the day, it wasn't until that night after once again I got no sleep except for a few winks sleeping on his floor that I decided we better call the Dr. immediately to get him in, I took him in at 3:00 and the Dr. said that it didn't sound like pneumonia, but definitely thought he probably had bronchitis. I took him to get blood work done and found out the medication he needed was at the pharmacy downtown, so I ran him home to Gordy and went downtown to pick up his medication.

Once again it was a night of no sleep for me and I found out shortly after I woke up this morning that the results from his blood work was not good, in fact it was horrible his White Blood Count was through the roof. His pediatrician called his pulmonologist and they decided that I could either take him into the hospital for IV antibiotics or I could go pick up one more antibiotics and give him one more day to get a bit better. Tonight has once again been a rough night, though perhaps a tiny bit better. Here I sit at 4:45 am about ready to pass out knowing that I needed to get this blog post off my shoulders, knowing that once I go to bed I will not be able to wake up for at least a few hours therefore Gordy will have to take over the alarm patrol.

Please pray for Luke to make a huge improvement today, I really don't want to go into the Hospital, I was hoping to not have to chalk up another holiday in the hospital, since we've already been there on Easter, Valentine's Day, Halloween, July 4th weekend, etc. . . We were hoping to go to Eastern Washington to visit my two sisters and their families this upcoming weekend, but there is no way we can do that now:-( I was telling Gordy that he could still take the kids over since they were so disappointed to hear they weren't going, but Gordy is nervous about leaving me here with Luke being this sick. Ah, such is life with Luker man.

Love in Christ,
Luke's Mommy Sue

PS Once again I want to let you know that I update my status on facebook often, especially when Luke is not doing good, so if you want more up to date information about Luke just ask to be my friend, though please tell me who you are so that I will except your friendship request:-)

Our Wonderful, Great, Refreshing, Amazing, Awesome Trip in Pictures

2011-12-12T22:30:00.000-08:00

Getting Ready to board our Carnival Cruise with our good friends Juan and Yoli

Saying goodbye to Miami, FL

Christmas in Cozumel

We had a great time doing the Cozumel Amazing Race and though we didn't come in first place we didn't come in last place either. We got to see so much of the city and would definitely say it was a highlight on our trip.

Here's Gordy getting ready to get his henna tattoo, one of the clues we needed for the race

Riding the ferry across a small river in Belize to get to the Mayan Ruins

The Mayan Ruins were absolutely amazing

We climbed to the very top of the tallest structure, yes it was a bit freaky up there. We were able to see both Belize and Guatemala up on the top.

Here's Gordy going down one of the many narrow passage ways.

I think we walked over a 1,000 steps to get up to the top and then down again.

We were blessed to meet Pastor Zacharias from England. It was definitely a highlight of our week visiting and praying with him, he has a healing ministry in England and was so burdened to pray for Luke during the week, what a gift from God to allow our paths to cross on that HUGE ship.

Here we are getting ready to go swimming at the bay in Roatan, Honduras. We had a wonderful time and the water was just right.

Our last night on the ship, we had so much fun dressing up for some of the delicious dinners on the ship. Now we are working extra hard to burn off those few pounds we gained:-(

After getting off the ship we went straight to the Everglades National Park to see the alligators and wild life. At first I didn't think the alligators were real because you could just about go right up to them and touch them. Don't worry we stayed away.

We walked about a mile down this path and saw 5 alligators down and back.

We then went on a boat ride through the swamps and saw more alligators it was so much fun.

We then drove out to Key Largo to spend the night at these condo's so that we could drive out the Key West our last full day in Florida.

We drove out to Key West, to say it was beautiful is a huge understatement, the water was so blue!

I was so excited to go to the southernmost point in the USA.

Everything about our last full day of vacation was spectacular, just as our whole vacation had been. The sunset was the icing on top of this amazing day.

Our last morning before flying home I figured I get in one more walk in the nice warm 80 degree weather. Now I'm back to walking in the freezing cold, it was 35 degrees here yesterday.

We got home late Tuesday night to a sick Lukie boy. I just had to keep telling myself as I was up most of the night to his alarms that I had to be thankful for our amazing time away. It really was the most awesome time, a time of uninterrupted sleep each night, a time to concentrate on Gordy and I's marriage, a time of fun, a time of no stress, a time of no appointments, a time of no alarms, a time of no medications, a time of HUGE blessings from GOD. Wednesday I took Luke up to Children's Hospital in Seattle for his first of many appointments during our first week back from vacation. I promise to update how Luke is doing in my next post, but I really wanted this one to be all about the gift of our vacation from our wonderful Father God.

Love in Christ,
Gordy's wife Sue

A Much Needed Break

2011-11-26T20:06:00.001-08:00

Gordy and I are taking off tonight for a much needed break. We are going on a cruise and will be gone a little over a week. We are desperately needing your prayers while we are gone, as the kids are not going with us. Amy, Natalie, my sister's Cindy, Jill and Lori are all going to watching the kids. To say going is hard is a understatement, but we know that we are in desperate need of a break.

PLEASE, really cover Luke in your prayers, that he will stay healthy and that he will have good nights. Both Amy and Natalie will be covering the nights and I know that they would appreciate your prayers.

Thank you,
Luke's Mommy Sue

Tis the season to be Thankful

2011-11-21T23:17:00.000-08:00

Luke, Lily and I at a restaurant after church on Sunday afternoon,
I'm so thankful that Luke made it church, it was his first time in months.

There is an old gospel song that I often like to sing that says, How can I say thanks for the things you have done for me, things so undeserved yet you came and gave your life for me, the voices of a million angels could not express my gratitude, all that I am and every hope to be I give it all to thee, To God be the glory . . . I have the rest of the song printed at the bottom of this post. This song pretty much summarizes how I feel about all God has done for me. I've actually been wanting to write a post lately telling about all the things that I'm so thankful for and decided that since Thanksgiving is in a few days now would be a great time to take the time to do so.

Things I'm thankful for:
God - Without God I don't know where I would be today, for one thing I know it was God that brought Luke back to life, it's God that time and time again has brought him back to us when he's been so close to death. It's God's love, grace and mercy that helps me get through the toughest days and nights, it's His peace that assures me that I can continue to go on when things around me look so bleak, it's His strength that often helps me get out of bed each and every day, it's His joy that helps me to laugh on those days that all I want to is cry and it's his hope eternal that reassures me that He is in control of my life and I can trust Him no matter what happens in this life that I'm living.

Gordy - I can not even begin to imagine what my life would be like without my husband. He is my closest friend, I can tell him anything and know that he will not laugh at me or make me feel bad for telling him those things that I can not tell others. I'm thankful that he is wise and that he is a man full of integrity, that he provides for his family needs and wants and that he is a wonderful father to his children.

My children - I am blessed beyond belief to have such wonderful children! They are always there to lift me up when I'm down, they tell me numerous times a day that they love me, they are not perfect by any stretch of the imagination, but they are amazing and I can not imagine my life without them.

My parents - They gave me such a strong foundation, I'm so thankful that they introduced me to Jesus at such a young age, they taught me to trust God at all times, they showed me by example how to have faith that can move mountains and they have always cheered me on and covered my back in prayer during those times of great need.

My siblings - As most of you know I have one brother, 3 sisters, 4 sisters-in-law and 6 brothers-in-law. I'm so blessed to have such wonderful siblings, my sister Cindy has helped me with Luke for so many years now, faithfully coming over a few times a week to get him up and bathed so after some of the nightmare nights I can get a few hours of extra sleep.

My friends - I'm blessed to have many friends, I can not even begin to mention them all here in fear that I would forget to mention one of them.

Faithful Prayer partners - I'm so thankful for each and every person that has faithfully prayed for Luke and our family, I know without a shadow of doubt that you are what has made our journey livable these past 7 1/2 years. Your prayers have kept Luke alive and healthy, thank you so much for your faithfulness.

There are so many other things I'm thankful for, there is no way that I can begin to mention them all here on this post, it would go on and on and on and on and on and on . . . . .

Here's Luke and I waiting for him to be hooked up to all the wires for his sleep study

Here's Luke hooked up to all the wires,
I'm not sure I could of slept with those probes all over my face.

I am also so very thankful for Luke's new Pulmonologist. We recently went to a new Pulmonologist because Luke's regular one was out of town on the day we made our appointment and there just happened to be a new one in the area. He called me with the results from Luke's sleep study and even though they were not that great, they weren't as terrible as he thought they would be, he mentioned once again that he doesn't think that Luke needs a trach at this time, Hallelujah!! We are going to continue on with the new neubulizer treatments he prescribed and see how he does on those before making any decisions about our next step in helping Luke. I will say that I really think these new meds are helping Luke, we are seeing some positive changes in him lately, he is not needing any where near to the amount of extra oxygen that that he's been needing lately. His nights are getting better, though still not great, definitely better. We go back to him on December 13th so we will see that day what he will say, I'm praying that it will be good, trying to believe what I can not always see, that's faith talking!

Last but not least Luke is coming back to us, as I mentioned in a previous post we have been slowly weaning Luke off his baclafen, which is his muscle relaxant and guess what?? His seizures are getting better and he's more alert and awake through out the day. I didn't realize how much that drug was affecting him until we really began the weaning process. Now I'm hoping that he will continue to get looser and not more tight because we will have to try something for his tone if he doesn't get better.

Love in Christ,
Luke's Mommy Sue

PS I can't wait until my next blog post to share with you some exciting news about what Gordy and are going to be doing next week, want to take a guess???

How can I say thanks

for the things you have done for me
Things so undeserved
Yet you give to prove your love for me
The voices of a million angels
Cannot express my gratitude
All that I am or ever hope to be
I owe it all to Thee

(Chorus)
To God be the glory
To God be the glory
To God be the glory
For the things He has done
With His blood, He has saved me
By His power, He has raised me.
To God be the glory
For the things he has done

(Bridge)
Just let me live my life
And let it be pleasing, Lord to Thee
And should I gain any praise,
Let it go to Calvary.

With His blood, He has saved me
By His power, He has raised me.
To God be the glory
For the things he has done.

No Peace = No Jesus Know Jesus = Know Peace

2011-11-13T10:49:00.000-08:00

No Jesus = No Peace,
Know Jesus = Know Peace,
pretty much sums up my life lately.

I have been dealing with a lot of anxious thoughts, thoughts of fear and despair, thoughts that definitely do not come from God. I have learned over the years that when I willingly give all my negative thoughts and fears to Jesus, He ALWAYS takes them away if I let him. I know, that I know that I know that I can trust God to help me get through the deepest trials, the longest nights, the hardest days, the times that I can't go on another minute, Jesus is ALWAYS there to pick me up and help me through whatever impossible circumstance that I have to get through that day, the KEY is that I have to ask Him for His help and then I have to TRUST that He will take care of it for me. For me the TRUST KEY, is often the hardest for me to use, sometimes I foolishly think that I can get through some of the deepest trials on my own and that's when I get into the deepest pit of despair.

I often tell other Christians that the easiest way for me to get out of the depth's of despair is to put on some praise music and to start singing praises to Jesus. It never fails to amaze me how God lifts me up, but once again it only happens when I allow Him too. Walking and singing praises to Jesus is what makes my life bearable on those days that seem unbearable. And the added benefit from all the walking I've done this year is that I feel better and I've lost 35 pounds as a added benefit.

Luke and I out on one of our many walks this year

The reason I'm writing this post today is for me to remember all the things that I just wrote above, you see tonight I take Luke in for a sleep study at the Hospital. First of all if you know me at all you know that I DON'T like hospitals ever. Second of all the last sleep study we did was a nightmare for me because I couldn't see Luke's numbers all night long they have a seperate room to monitor them in so I wasn't sure how he was doing through out the night. The third reason is I'm trying so hard not to be fearful for what they will find out during the study, for you see I've been living the nightmare of horrible nights for months now and I know it's not going to be good. The fourth reason is because for me it will be another night of no sleep and I'm already living on little to no sleep and it's just not good for me physically or emotionally to be so sleep deprived. The last reason is because I don't like going to the hospital, opps I know I already mentioned that one but it is true!

I would really appreciate your prayers today and through out the night tonight that God would help me to TRUST Him today about this study tonight and also that Luke would sleep ok and they would figure out something that could help him so that our nights will become easier.

I had to take a picture of my devotional page the other day, I was once again amazed at how God brings reminders into my life on a daily basis that He loves me so much and He is willing to comfort me if I let him. I in turn then can pass on that comfort to others in need, for I truly believe the only way to really get out of your pit of self pity is by giving a hand to someone else to get out of their pit of troubles. Taking my eyes off myself is the biggest key I have found to getting better.

Love in Christ,
Luke's Mommy Sue

The Facts of Life with Luke

2011-11-11T01:39:00.000-08:00

Here's Luke and I on a walk through Wrights Park, downtown
Tacoma after his Neurologist appointment today

Fact #1 - Luke is a 8 year old boy, who was born healthy and stayed that way until he was found dead in our back yard pool. We believe that God brought him back to life. Because of his near drowning accident he suffered an anoxic brain injury that has left him unable to walk, talk or do anything for himself.

Fact #2 - Luke now weighs 48 pounds and is getting very tall, his knees have not bent for at least 7 years making it extremely challenging to pick up and move around.

Fact #3 - Luke has gorgeous brown eyes and very long eye lashes, he is unable to talk, but does communicate with his eyes, he will blink to let you know what he wants. He also let's you know if he is in pain by the fact that his eyes get red and he will start to cry.

Fact #4 - Luke now has severe lung damage because of the water he swallowed, along with the fact that he has aspiration problems. He now suffers from Bronchialecsis and atlectasis which causes him to have pneumonia's often, along with a need for supplemental oxygen at times.

Fact #5 - Luke is unable to eat through his mouth, therefore has a g-tube in his stomach that allows us to feed him through a feeding tube. He was also recently diagnosed with gallstones, which will mean he will have to get his gallbladder out sometime soon.

Fact #6 - Luke is the sixth child in a family of seven children, he has 3 brothers and 3 sister's, his oldest brother Daniel married Sarah a little over a year ago, they now live in Centralia, WA, his sister Natalie married Josh two plus years ago, they live within walking distance. He shares a room with his younger sister Lily, his sister Amy quite often helps take care of him and his sister Natalie comes over two morning a week to help get him up and ready for the day.

Fact #7 - Luke has had way too many appointments lately, yesterday he was casted to have new wrist orthodics done, along with a preliminary appointment to talk about casting his ankles to help retrain his feet not to go up into his legs. He has been slowly weaned off baclafen, which is a medication to help relax muscles, but has found that the more we wean the looser he gets, it's also helped get rid of most of his seizures he has been dealing with lately.

Fact #8 - Luke at one time had nurses to help take care of him, but he lost those nurses when he got rid of his trach. He now has his family to take care of him along with his Auntie Cindy and even though we qualify for our state waiver program we don't recieve that benefit because our state is broke.

Fact #9 - Luke has only been admitted into the Hospital 3 times in the past 3 years, once for a EEG, once to get his tonsils out and the last time for a very horrible pneumonia he had last February.

Fact #10 - Luke and easy don't ever go in the same sentence, though Luke and love sure do. The challenges our family experience because of Luke's needs has been overwhelming at times, especially lately. Night's have been nightmares, especially for Luke's mom who has been up all night with Luke a lot lately.

Fact #11 - It is only because of our faith in God that we continue to believe that Luke can be completely healed, not because we deny that Luke is the way he is, but we affirm that we serve a miracle working Father. We know that God makes brains and lungs each and everyday when he forms babies in the womb, therefore it's not hard for God to restore Luke's brain and legs back to perfection, that's what we know to be true and we will with faith believe that God will do that for Luke.

Fact #12 - Luke has been blessed with many people who deligently and faithfully lift him, along with our family up in their prayers. We don't know where we would be today without those prayers, thank you for your faithfulness!

Zeke turned 11 last week, we celebrated his birthday on Sunday afternoon

Urgent Prayers Needed Today For Lonnie

2011-11-07T08:36:00.001-08:00

My sister Lori's husband Lonnie is going in for open heart surgery today at 11am. Please be praying for him to be safe during the surgery, for the surgeons and antesiologist to do a good job and for peace for my sister and his family.

I along with my dad and sister Cindy drove 4 1/2 hours last night to be here in Spokane for the surgery today. We were able to pray with Lonnie last night, it was so good to him smiling and at peace with the surgery today.

Thank you,

Sue

PS Luke is doing a little better, Gordy said he had a pretty good night. Please pray for him to have a good day with Natalie and Amy watching him today:-)

24 Very Long Challenging Hours

2011-11-04T23:59:00.000-07:00

Sometimes you wonder how much you can handle in a 24 hour day and though this is definitely not the most challenging day I've had in my life it's perhaps in the top 10.

12 am - I'm still up because even though Luke is doing a bit better tonight I'm having a hard time shutting down my mind, after being up so late each night for so long my clock is turned around a bit. I decide to finish up my last blog post, start another load of laundry and then since Luke is doing so good try to get to bed.

1 am - I give Luke his nightly medications, clean up the kitchen a bit, put one more load of laundry in the washer and by the time I'm done with all of that it's close to 2.

2 am - Climb into bed and thankfully conk out pretty much immediately.

8 am - Get woke up by Lily climbing into bed with me, thankful for the full 6 hours of sleep. I can't remember the last time I've actually had 6 hours of uninterrupted sleep. Shoo Lily out of my bed to get dressed and eat breakfast so that we can get some school done.

9 am - Finally climb out of bed, check my e-mail to see if I have any results listed from Luke's blood work or x-ray from the previous day. Shoot off an e-mail to Luke's pediatrician asking if he's heard anything. Get the kids going on their school work and Zeke to practicing his piano lessons.

10 am - I get the e-mail from the Dr. saying that the x-ray does not show pneumonia, but does show a severe scoliosis in the spine, along with the details about the atelectasis and bronchilectas Luke has in his lungs. The blood work comes back a little better from the last month, but shows Luke's CO2 numbers high, along with some definite inflammation. I then work on a couple medical bills that I've been needing to take care of, thinking to myself that I definitely don't need that stress today.

11 am - I finally stop for a few minutes to eat a English muffin, clean up the kitchen, help the kids with some more school work, get Luke's stuff ready to go to his appointment. Amy gets home from a Dr.'s appointment, she has a bad sinus infection brewing, so I'm thankful that she went in for some antibiotics.

12 pm - I jump into the shower, kicking myself for waiting so long because now I'm stressed that I might not make it in time for Luke's appointment. I'm literally running out the door, well not really running as I am carrying Luke and it's challenging just to carry him these days since he weighs about 50 pounds. As I'm getting on the Highway I have a car pull up beside me to tell me that I my back tire is going flat. I pull off the next exit and take a picture to text Gordy asking if he thinks I can make it to my appointment, because even though it's definitely low, it's not flat. I decide to go ahead and try to make it to the appointment because I don't want to have to reschedule it.

1 pm - I pull into the parking lot thanking the Lord for a parking place, I jump out of the car get Luke's wheel chair out, put Luke in, put his back pack in the bottom of it, grab his suction machine, his oxygen tank and my purse and I literally run to make it in time for his appointment. We make it there 5 minutes late. After giving the nurse all Luke's medical information we finally see the Dr. about 30 minutes later.

2 pm - We finally meet this new Pulmonologist. I don't know that anything he had to say was good news, in fact it was quite depressing. I had brought the x-ray from yesterday to show him and then he proceeded to tell me about all the horrible things going wrong in Luke's lungs. He showed me the Atelectasis, which is his collapsed lung on his lower right side and showed me the middle of his lung where there is scarring from constant aspiration, then he showed me where Luke has too much air in part of his left lung, which is causing stress on his heart, then he showed me the curve in his spine which is also causing air flow issues. He then went on to tell me that he could tell by looking at Luke's finger tips that his bronchialectasis was not doing good.

2:20 pm - To be honest I learned more today than I have ever learned from an appointment like that before. I sat there just wanting to cry. He then went on to say that he's not sure a trach is Luke's best option right now, which was a happy thought for me. Because a trach could weaken his cough, of which he has a good cough now. A trach could also cause more secretions, which would be a bad thing. He decides that we need to do another sleep study, to see how bad his sleep apnea is at night. He also put Luke on two new nebulizer treatments, one is to help dry up his secretions and one is a steroid. He also put Luke on Cipro again to see if we could get rid of the infection that is constantly brewing in his lower lobes. Whew!

3:00 pm - I walk over to the Mary Bridge Speciality Clinic to sign a waiver to allow the therapy unit to appeal a wrong diagnosis code they used when Luke went to see a OT there. You see they put down cerebral palsy instead of anoxic brain injury, due to a drowning accident. Of which our insurance will not cover Cerebral palsy, but will cover anoxic brain injury. They wanted me to appeal this wrong coding even though I didn't do it, long story longer the sweet receptionist told me that she would take care of it but needed my signature to allow her to proceed. That done Luke and I now walked over to another building to get his prescriptions filled and to take in Luke's sputum collection to the lab. When they told me it would be about 20 minutes to fill the prescription I told them I would go grab a bite to eat and be back to pick it up.

3:40 pm - I walk down the hill to Subway, by now I'm so hungry because all I've had time to eat today has been a English muffin. I eat my lunch and head back up the hill to Group Health thinking I had given them plenty of time to fill my prescription, but no when I get there I find out they are still working on it. By now all I want to do is cry. I wait about another 15 minutes, freaking out because we are having to be by all the sick people in the waiting room, they finally call us up there and we find out the reason it's taken so long is because they are on hold waiting to be sure the Dr. has prescribed the correct amount of antibiotic because to them it seems to be extreme. I tell them that Luke just recently had this prescription, they check on it and sure enough they realize it's okay.

4:00 pm - I walk back to the van and just sit there and hold Luke for a few minutes, shedding a few tears thinking to myself without a touch from Jesus I just don't know how much longer Luke is going to live, my other thoughts are how do you let go of your precious child. Then I remember about my tire and wonder if I have the energy to take care of it. Just about that time Gordy calls me to say he is done taking the boys bowling and he will come help me with the tire, whew, what a huge load that lifted off my back. We then trade vans and he takes the boys home.

5:00 pm I run into Costco for a few items, fill up the van with gas. On the way home I get a call from my sister telling me that her husband has to have open heart surgery on Monday, my heart is broken by the pain I hear in her voice.

6:00 pm - I get home just in time to kiss Gordy good-bye, he is going to a football game. I then get Luke fed and all the ingredients ready for the boys to make individual pizza's. You see Zeke's birthday was last Wednesday and I told him he could have some friends over to spend the night, so he along with Isaiah, has Ben, Josiah and Nate over for a friend birthday party.

7:00 pm - I get a call from a good friend telling me that she found out today that she has a lump on her thyroid and the Dr. thinks it might be cancer, along with some other bad news she has just learned today, I pray with her believing that God will heal her and help her get through this day of days. I clean up the kitchen, then make some homemade no bake cookies for the boys, I then get Luke ready for bed and hold him for a bit doing some chest percussions on him.

8:00 pm - Zeke opens up some presents, then the boys have cookies and ice cream.

9:00 pm - I get Luke into bed late tonight, he starts out the night with great numbers on his oximeter, I then sit down to the computer to get caught up on face book and watch a movie on Netflix.

10:00 pm - Gordy gets home from football game.

11:00 pm I respond to Luke's alarm he's is having one of his sleep apnea episodes, not breathing at all, I'm trying so hard not to panic but it's hard when his numbers are dropping down into the 60's before finally rebounding up again.

11:45 pm - I tell the boys it's time to get ready for bed.

12:00 am - I tell the boys once again to get their teeth brushed, jamies on and climb into bed. Then I sit down at the computer and decide to write about these last 24 hours. I realize this post is way to long, but I guess I don't care once again this is my journal of our journey and this is one day I hope to forget about one day,therefore I need to write it all out so that I can look back on it with thanksgiving that God gave me the strength to make it through without completely losing it.

The End
Here's a picture of the boys at Zeke's Birthday Party

Seems like lately it's one trial, after another trial, after another trial . . . . .

2011-11-03T22:45:00.000-07:00

I so wanted to keep up my last post a little bit longer, I love looking at all the pictures of the wonderful memory filled retreat weekend. But alas I need to update on how Luke is doing, since this blog is all about Luke after all.

Luke & I at one of his many Dr. appointments

It seems like since the end of July Luke has been having one trial after another, after another, after another. If it's not pneumonia, it's blood coming out of his g-tube, if it's not one Dr. appointment, it's another Dr. appointment, if it's not one blood draw it's another blood draw, after blood draw, after blood draw, if it's not one x-ray, ultrasound, x-ray, it's another x-ray, if it's not one procedure, it's another cat scan, if it's not one seizure, it's another seizure, if it's not gallstones, it's trying decided whether doing surgery to take them out is the right thing for Luke, if it's not trying this medication, it's trying another one unsuccessfully, I think you get the picture.

Gordy and I sat down on Saturday and had a real heart to heart talk about what we are going to do about Luke. I just don't know how much longer I can go without getting any sleep at night, it's not only hard on my body, my mind, my spirit, it's also hard on my other children as I can not be there for them as I should be. We both came to the conclusion that if Luke getting a trach is our answer to getting him the help that he desperately needs then we have to be willing to talk to the Dr. about this happening. Though it did take me a few more nights of no sleep before I finally put the call through to the Pulmonologist today. To find the courage and strength to make that phone call today is nothing short of a miracle for me.

I know many of you are saying what's the big deal about Luke getting a trach??? Lot's of kids have trach's, Luke had a trach, trach's help kids live better lives. A trach will most likely get you nursing help again, a trach will help get that gunk out of his lungs, a trach may help Luke take deeper breaths causing him to finally open up the lower part of his lungs that have been collasped for many years now. While all those things are most likely true, the part about getting a trach that I don't like at all is it complicates our lives, no longer will I be able to get just anyone that is willing to learn how to watch Luke, I will now have to be sure they are certified to do trach care.

While nurses are a huge blessing, they can also be a huge trial, we were blessed in the fact that after many months we found some great nurses, but finding those nurses caused many days and nights full of frustration and tears. Just imagine for a moment having someone come over to your house everyday, on all those days whether you feel like having someone over or not they are coming, you fell like you need to keep your house a bit cleaner, you fell like you can not always be the "real"you, you may live in fear that if you discipline your child in a way that the nurse doesn't agree with they could call CPS to do an investigation on your family, that has happened more than once to many of my friends. It's weird to go to bed knowing that you have someone sitting in your home awake, taking care of your precious child, thinking I should be the one to be there if they need something. I think you get the picture.

As mentioned above I did call to make an appointment for Luke to go into his Pulmonologist today only to find out that he is at a Cystic Fibrosis conference, he won't be back until Monday. We are therefore trying out a new Pulmonologist tomorrow. Will you be praying with me that he will help us think of some other options that we haven't tried yet before giving us the option of a trach?? I keep thinking we haven't tried everything yet and perhaps that one new medication or treatment will be just the thing that will help Luke out.

I am thankful, so very thankful for all your prayers, I know I say it over and over again, but it's true, they really are what keep us going. It is only because of God's supernatural strength that I'm able to rise out of bed everyday with enough energy to not only get through all the stuff I need to get done, but also with enough energy to walk at least 2-4 miles a day. The walk keeps me sane:-) May God richly bless you for your faithfulness.

Love in Christ,
Luke's Mommy Sue

What a great weekend was had by all during our 2nd Annual Mom's Retreat

2011-10-30T11:57:00.000-07:00

Here are all 15 Mom's

Back row Janet, Sue, Lindsey, Tiffany, Kehau, Amy & Teresa
Front row Annie, Dawn, Jill, Julie, Joanna, Lisa, Shauna & Erin
A Big Thank you to Julie for giving us all a new t-shirt & to Lindsey who designed them

It's amazing to think that none of us mom's would have never even known each other except for the fact that we've all lived through the most severe tragedy that can be comprehended.

We've all seen our children die from drowning and we've all seen our children come back to life. We've all spent weeks in the PICU wondering if our children will ever wake up out of their coma, we've all spent numerous nights sleeping on uncomfortable chairs/bed's in hospital rooms, we've all been told that our children have little hope of ever being the same again.

Some of us have gone through the trauma of watching our children suffer from seizures, watching them struggle to catch their breath while they have yet another pneumonia, watching and praying that they will wake up from yet another surgery or procedure.

We've all lost count of how many appointments we've taken our children to, most of us have tried many different kinds of medications/supplements to help our children be able to loosen up from the horrible muscle tone they experience. A lot of us mom's have tried every type of therapy we hear about, always looking for something that will make a difference in our childs life. We've all cried way too many tears and have lost way too much sleep.

And yet somehow, we continue to stay strong. We have learned that we can go to each other with questions and concerns, it's a safe place to go knowing that we all want the same thing for our children, we all want to see our children healthy and happy.

This one weekend of the year we all go knowing that we will all be able to relate with each other what we are going through, knowing that we can talk about medications, therapies, surgeries, supplements and understand what we are talking about. This one weekend of the year we can laugh together and not feel bad if we shed a few tears, we understand each others pain and we except it for what it is. It's like taking a deep breath knowing you're understood, it's refreshing and renewing and we can't wait for our next one to come.

Lindsey and I getting a pedicure on Wednesday afternoon the day before the retreat began

Shauna & Lindsey at Ivar's Fish Bar on the Seattle Waterfront

Lindsey, Shauna & I at Pike's Place Market on Thursday morning

Amy, Julie and Jill in Seattle

Janet, Julie, Dawn, Teresa, Amy & Joanna arriving together on Friday afternoon

Everyone learning how to play Hand and Foot on Friday evening
Teresa and Tiffany waiting for everyone to take our annual picture Saturday morning

Lisa, Kehau, Joanna and Shauna visiting Leavenworth for the first time

Joanna and Erin, with Julie creeping behind them in Leavenworth

Teresa & I taking a break after a full day of walking around Leavenworth

Lisa, Amy, Shauna, Julie & Erin posing for a picture in front of the Christmas store

Julie, Lindsey & I getting a picture of the beautiful tree in Leavenworth

Kehau & Shauna enjoying the beauty of the tree's in Leavenworth

Teresa, Annie & I posing for another picture in Leavenworth

Lindsey & I in front of the this beautiful wall of leaves

This picture really shows our true colors shinning through, lots of laughter and fun!

Julie, Erin, Lindsey & Janet taking a much needed break after walking around town for hours

Joanna & Kehau enjoying a cup of coffee

Kehau & myself, she had to take a picture in front of this beautiful wall of leaves. It was Kehau's first time to see fall leaves since she is from Hawaii and they don't have fall leaves there.

Lindsey, Amy & Joanna playing BUNCO

Dawn & Annie enjoying a delicious piece of Chocolate cake that Teresa made for us

Dawn, Jill, Erin and myself playing BUNCO

Most of us out for a walk on Sunday morning

All of us posing for a picture in the wine cellar of Stillwaters Winery/Restaurant
Annie, Teresa & Lisa sitting in the freezing cold cellar enjoying our lunch

Tiffany & I sitting at the head of the table for this picture

Joanna, Lisa and Lindsey being silly. We were all being very silly, so much laughter and fun times, it felt so good to just let our hair down with no stress going on in our lives.

Annie braided Joanna & Lindsey's hair, fun times

All of us being silly in this picture

Saying good bye at the airport, such a hard thing to do, but comforted knowing that we will all see each other again next year for our 3rd Annual Mom's retreat:-)

2011-10-22T11:02:00.000-07:00

Just a quick update:

All 15 moms are here

I had a wonderful relaxing day yesterday, went for a walk, sat in the hot tub, played hours of fun games, spent lots of time laughing and talking.

Luke is doing so much better at night, which is a huge answer to prayer.

We had a great breakfast this morning, we are having a little time of sharing, then we off to Leavenworth for a few hours.

Thanks for all your prayers they are working, please keep them coming!

Love in Christ,

Luke's Mommy Sue

We sure would appreciate extra prayers this weekend

2011-10-20T00:57:00.000-07:00

Well it's finally here our 2nd Annual Retreat for Mom's who have a child that has suffered from a near drowning accident. As many of you may recall we had 11 Mom's and 1 Grandma come last year, this year we have 14 mom's coming, along with myself make a total of 15 mom's plus our wonderful, airport runners/cookers/dish washer's Amy & Yoli. We have 5 new mom's coming this year and one mom who could not come back this year, but hopes to come back next year, I hope she does too:-)

I'm very excited for this weekend, but to be honest it's been kind of crazy pulling together all the details and even now I sit here blogging instead of packing my clothes, at least I have all the food packed, along with all the other items I need to take there this year. I hope to get at least a few hours of sleep tonight, before I need to be at the airport tomorrow morning at 9:15 am to pick up Shauna our next mom to come.

Lindsey decided to come in one day early so I went to pick her up at the airport this morning, then we went to Costco to finish the grocery shopping, ate lunch at Taco Time, one of her favorite restaurants, after unloading the van we went to get a pedicure and then to top off our afternoon we each went to get a massage. We then came home to a delicious dinner prepared by Amy. Natalie, Josh and Josh's brother visiting here from Missouri, along with Lance all joined us for dinner so we had a very full fun table tonight. We ended the day playing a card game with Natalie, then packed up the van with all the food stuff and other items we will need this weekend. Now everyone but your's truly is sound asleep while I sit here blogging, did I mention I still haven't packed yet??

Here's Lindsey and I getting a Pedicure, woohoo:-)

After picking up Shauna tomorrow, we are going to Seattle for a little while before heading over the pass to Suncadia. It will just be the three of us before the next four mom's fly in late at night. Then the rest of the mom's come in on Friday. I'm looking forward to sleeping in on Friday morning, it will be everyone for themself for breakfast.

PLEASE keep Luke in your prayers, even though he is doing so much better during the day, his nights are still very challenging to say the least. Amy will be here tomorrow night with Gordy before she heads up to join us mom's, so that means Gordy will be home by himself Friday, Saturday and Sunday night. Thankfully my sister Cindy has volunteered to come over Saturday morning to get Luke up and ready for the day so that way Gordy can have a little extra sleep just in case the nights continue to be a challenge.

On Saturday evening Gordy, Josh and Natalie are taking the kids up for Starlight's Trick or Suite, where the kids will enjoy a carnival atmosphere of games and fun stuff at a very nice hotel in the Seattle area. Josh and Natalie have volunteered to spend the night with Lily, Isaiah and Zeke so that they can have a great time swimming in the pool and enjoying the hotel while Gordy will be bringing Luke home, which will be so much easier than having him stay there too. Sorry I will be missing all the fun but I had already scheduled the retreat before I saw the dates for this fun outing.

Last but not least please keep all the mom's, along with their children and families in your prayers this weekend. Here is the list of who is coming: Annie from OK, who has Izzy, Kehau from HI who has Caleb, Tiffany from HI who has Abbie, Julie from CA who has Joey, Jill from CA who has Seth, Dawn from CO who has Collin, Joanna from GA who has Ethan, Amy from GA who has Jake, Erin from NC who has Aidan, Teresa from UT who has Samuel, Lindsey from AZ who has Santana, Shauna from AZ who has Christian, Lisa from WI who has Brock and Janet from MN who has Travis.

Thank you for your faithfulness, your prayers keep us going:-)
Luke's Mommy Sue

So many tears shed today, for so many reasons

2011-10-17T23:23:00.000-07:00

Today was one of those days that I would just as soon forget. It was a hard day, really hard for many reasons. Partially because I was/am exhausted, I can't remember the last time I have slept for more than 3 straight hours. I didn't get to bed until after 4 am therefore I slept in a bit to get a few hours of sleep, hating the fact that my day was partially over when I finally rolled out of bed. It was a beautiful sunny day so I did go for a short walk, which actually only brought a little bit of pain to my knee, yahoo I'm getting better. After a walk and shower I had to hurry to get Luke to his Dr. appointment on time arriving 3 minutes late, I was so glad they didn't make us reschedule it.

Luke and I waiting to be called back to see the surgeon

The surgeon we saw today was the same surgeon that put in Luke's trache and j-tube shortly after his near drowning accident 7+ years ago. He didn't remember Luke, didn't really expect him to after so many years. We talked about the pro's and con's of Luke getting his gallbladder removed. He was very inconclusive on whether we should proceed with the surgery. On the one hand many people have gallstones and never even know they are there, therefore they never even think about taking out their gallbladder. On the other hand the majority of children that have gallstones usually get their gallbladder removed so that they don't have problems with them at a later time in their life. I asked him if it was his child what would he do and he said that he would probably take out their gallbladder, that said he wasn't sure if that was the right answer for Luke.

The Dr. said that because of Luke's neurological and respiratory problems it's not expected that he should live a long life therefore why should we put Luke through what could be a dangerous surgery because of the sedation process. He said this as if we hear it all the time, he even mentioned to me I'm sure you've heard this before and if you haven't then Dr.'s are not being honest with you. Nothing like throwing a huge dose of reality in my face. I realize that this is a totally true statement according to man's belief's, but I serve a Mighty God who does not listen to what man has to say, His ways are not our ways. And even though I don't doubt for a single second that Jesus is able to reach down right now and heal every part of Luke, it still hurts to hear this said about my precious child. Just imagine hearing these words said about your child or about yourself, it hurts more than you can comprehend.

After our appointment with the surgeon I had a long talk with Luke's pediatrician over the phone about what he thought we should do. We basically came to the conclusion that we should probably move ahead with the surgery, because if Luke does have a gallstone come out it could cause him major problems and because he is unable to tell us where he hurts we won't know it's his stomach giving him pain until perhaps it would be too late. Though before we move ahead Luke Pediatrician wants to consult with his Pulmonologist to get his opinion on what needs to happen before Luke is ready for surgery. More appointments, erk.

On a happier note, Luke is doing so much better today, he didn't need any extra oxygen today, which was a huge step in the right direction. Tonight has also been better, not even close to the same amount of alarming and suctioning, Praise God. I'm also very close to being just about done getting together all the food for the retreat, which is a huge relief.

PLEASE, pretty please pray with me about Luke getting completely over this sickness so that I can feel good about leaving him at home with Gordy this weekend, because to be honest the thought of leaving Luke this weekend is not something that either Gordy or myself is looking forward to. Also please pray for Tiffany's son Kyle who was admitted in the hospital today with some major problems going on. It's Tiffany's home that we will be staying at for the retreat and is vitally important that she is able to be with us there of course.

Thank you,
Luke's Mommy Sue

My oh my, here's my journal entry about the week that never seemed to give us a break

2011-10-17T02:34:00.000-07:00

Oh my goodness, what a week! I think that I spent close to 10 hours at medical appointments last week. I realize this is a really long post, I was going to apologize for it being so long but then I had to remind myself that this is a journal of our life with Luke and this week has been a doozy of a week. Someday I may look back on this entry and wonder where I was able to find the strength to go on another day, hour, minute, second and then I will remind myself it was only because of God's supernatural strength that I was able to get through it and still be standing, because He once again has shown himself to be Mighty in my life.

Monday Luke had his rehab Dr. appointment where we decided to wean him off the baclafen he's been on for years now and try a new muscle relaxant once we get him weaned off it. Once we left that appointment I took Luke to get a EKG done for his Neurologist who wanted to see if his heart is doing ok since I had reported to him that Luke was having a high heart rate in the middle of the night the previous week, I thought it was due to the seizure meds we were trying out, but of course it could of been due to others things, who knows for sure. When I got home I realized that both Zeke and Lily were not feeling well at all they both had very sore throats a low grade fever and head ache. That night Luke had a rough night, Lily had a rough night and even Zeke was up a few times crying, which meant I got very little sleep.

Tuesday I was blessed to have Natalie come over to help in the morning so that I could get a few hours of sleep, then when I did wake up I realized that both Zeke and Lily were not doing any better, so of course they were unable to do any school that day or go to the YMCA. I did end up going to the Y with Isaiah who was feeling good. Silly me I thought I would try out the Zumba class, oh my goodness did I pay for that, with severe pain in my knee, in fact the pain was so severe that even after taking 4 Ibuprofen I was still crying out in pain. Needless to say I didn't get much sleep once again.

Wednesday Gordy ended up staying home from work because I was unable to give Luke a bath and needed help just to get him out of his bed into the living room. Once I was up I realized that Zeke's tonsils were so swollen that I needed to get him into the Dr. that day and I also made an appointment for me to have my very swollen knee checked out. Between the two of us we spent about 2 hours at the Dr.'s office that day. I got home just in time to help Gordy clean up Luke who had been throwing up constantly for about an 1/2 hour. As I picked him up I realized that he was feverish, upon taking his temp I realized it was close to 104. I immediately gave him Tylenol praying that he would not throw it up and ran to the store to buy children's ibuprofen since we were all out. Once again it was a night of very little sleep, constant suctioning and slowly, very slowly feeding Luke praying he would keep some of it down.

Thursday I got to bed at about 7 am, slept for a few hours and then decided that we needed to get Luke into see the Dr. Took him in and after his Dr. listened to his lungs he didn't think that Luke had pneumonia, but to be on the safe side we did x-rays and blood work. I asked the Dr. what if anything showed up on Luke's EKG and he told me that Luke is showing some strain on his heart because of his lung problems, not the news I wanted to hear at all. The Dr. said that he would let us know as soon as he did, what the x-ray and blood work showed up. That nights things turned even worse as Luke was needing massive amounts of oxygen just to keep his numbers above 90. I was finally able to get into bed around 4 am.

Friday I woke up and checked to see if anything had been reported from Luke's Dr. and sure enough he wrote an e-mail saying that the radiologist thought that Luke did indeed have pneumonia, then he called about an hour later saying that Luke's blood work came back showing that he was brewing a huge infection and to say that I needed to get Luke into the office ASAP to get him some shots of antibiotics and to pick up the other two antibiotics he had ordered for Luke to take at home. They didn't have the antibiotics at the office we were at so I ran Luke home and then went down town to pick up his medications. Luke had a tiny bit better night that night, though he was still needing way too much oxygen for my liking.

Saturday I was able to sleep in a little bit, Praise be to God! Luke was doing a little better, Praise be to God! I was feeling good enough to walk about 2 1/2 miles and even though it was way slower than my normal time, I was able to make it without too much pain, Praise be to God! I was able to get the laundry done and a few other things done around the home, Praise be to God! That night I had my graduation/Auction for the Leadership training course through the Pierce County Coalition for Developmental Disabilities, that I had been taking for the past year, so glad I took that class, but also glad it was done, Praise be to God! That night was another rough one and because I decided to try to go to bed by 1 am, I ended up paying for it because both Gordy and I were up a couple times every hour all night long, yep it was a long frustrating night.

Sunday both Gordy and I dragged ourselves out of bed exhausted but knowing that we needed to get the kids ready for church and Gordy told me that I could go this week since he went last week. Luke seemed to be doing a bit better again and that was good news, but we both knew he was not ready for church. I went and I was so glad I did, our Pastor let me once again announce the mom's retreat and we were able to have some good prayer for all the mom's going. After church I was blessed by people giving me donations to help with the costs, I went home with $320, which was so amazing. I was able to go do some of the shopping that I've needed to get done all week for the retreat.

Well here it is Monday morning at 2:30 am. I really need to go to bed, but I want Gordy to get a good sleep since he has to get up to go to work tomorrow morning. Luke is doing so much better tonight but he is still alarming about every 15 - 30 minutes. Luke has another appointment today with the surgeon to discuss his gallstones, I know that he is going to suggest taking out Luke's gallbladder, erk. Though I don't think they will even think about surgery until he recovers from his recent bout of pneumonia. I hope and pray that Zeke wakes up feeling all better tomorrow, his tonsils are still huge and bothering him, if he's not 100% I will be calling the Dr. about that too.

I figure if you've actually read this whole blog post you are either very bored or perhaps you truly are concerned about Luke's journey, of which I want to thank you for your continued concern. It goes without saying that we sure could appreciate some prayers this week: Luke needs a miraculous touch in his lungs, Zeke needs a healing touch in his tonsils, all the mom's coming to the retreat this weekend need peace about leaving their precious little ones at home, their children and family all need to be healthy so that they can come knowing that all will be fine at home, I need an extra portion of strength this week and my good friend Mary is going in for surgery in the morning, please keep her in your prayers.

Love in Christ,
Luke's Mommy Sue

Erk, Luke has pneumonia once again

2011-10-14T23:50:00.000-07:00

This morning I was not surprised to find out that Luke once again has a very bad pneumonia, especially after the nightmare night we had last night. His blood work came back showing that he is brewing a huge infection and his x-ray showed that he has pneumonia in his right lower lobe. The Dr. sent an e-mail telling me about the x-ray and then followed up with a call saying that I needed to get him in there ASAP so that he could get a double shot of antibiotics and then I could pick up his prescription of the other two whopper antibiotics that he will need to be on the next 10 days. He also said if we don't see remarkable improvement by tomorrow then we will need to take him into the hospital.

Here's Luke right after getting his double whammy antibiotic shots

I'm thankful to report that he is doing a little better tonight, though he is still alarming about every 15 - 20 minutes, it's nothing like last night, thank goodness. My prayer is that by tomorrow all the antibiotics that he is currently on will start to kick into high gear and he will start to make a speedy recovery.

We did end up having Amy's birthday party last night, I think we had 24 people come, can you say crazy, yep that's what we are crazy. It was very stressful because Luke was still not doing very good and with that many people over he was even more stressed. Oh well life has to go on, that's what keeps our family healthy, trying to balance Luke's needs with everyone elses, sometimes we suceed at that and other times we don't. We will keep trying to get it right as long as we have to, as we don't have many other options at this time do we?

I'm going to try to go to bed now, hoping to get a few hours of sleep tonight as I have a list a mile long of things that I need to get done tomorrow and then tomorrow night is my graduation/auction for the Pierce County Leadership Advocacy Class I was a part of this past year. I'm glad I was part of that class, I learned so much, but I'm also glad it's one more thing that I won't have to worry about anymore.

It goes without saying that your continued prayers for Luke to get better would be greatly appreciated. Also prayers that I will be able to get all the things I need to get done for the retreat pulled together, as it will be here next week. And last but not least for all the mom's coming to the retreat and their children to be healthy this week and the entire time they are gone.

Thank you,
Luke's Mommy Sue

Sometimes I feel like a broken record, sorry:-(

2011-10-13T11:51:00.000-07:00

I want to start by apologizing to you if you feel like you are reading a recent post, because that is what I feel like I'm doing, writing the same thing over and over again. Luke is very, very sick it started yesterday while I was at the Dr.'s office for Zeke and myself. Zeke and Lily have been battling a very sore throat, headache and fatigue all week long, Zeke's tonsils were so big yesterday I took him into to get them checked out and thank goodness no strep, just some nasty virus going around. I went into have my knee checked out as it was swollen and I had been in so much pain the night before that even after taking 4 ibuprofen I was still crying from excruciating pain, thank goodness it's feeling a little better today and Lily is feeling better too, Praise God.

Here's Luke and I at one of his many, many, many Dr. appointments he's been at lately

Not sure what's going on with Luke he just out of the blue began to throw up yesterday during his lunch feeding, I then picked him up so that Gordy could change all the bedding underneath him that had been soiled from throw up and felt he was burning up from fever. His whole body was shaking, I didn't even realize he had a fever, to come to find out it was 104 was terrifying. We immediately gave him some Tylenol praying he would keep that down and I ran to Target to get some Ibuprofen as we often have to do both when dealing with this type of fever.

Needless to say it was a very long, long, long, long night, I didn't climb into bed until 7 am. I called first thing this morning to take him into the Dr. and we are going at 1 pm. Currently his fever is down to 101, his heart rate is down too and he's not needing as much oxygen, which is good news. PLEASE pray with me that we catch whatever he has going on quickly as next week is the retreat.

Here's Amy and her boyfriend Lance at Mt. Rainier last September

Last but not least today is my precious Amy girl's birthday, she is 24 years old. We are planning to have 20+ people over tonight for pizza and birthday cake. Will you please pray that it will be a wonderful birthday, I have much to do today to get the details pulled together for the party and I'm running on just about no sleep. I just have to remind myself that I can do all things through Christ who strengthens me, over and over again today.

Love in Christ,
Luke's Mommy Sue

PS PLEASE pray for Abbie, she is back in the PICU today. Tiffany is one of the mom's coming to the retreat next week and she needs Abbie to be healthy.

Oh my goodness, what a really long day:-/

2011-10-05T21:37:00.000-07:00

My really long day began to get exciting this morning around 3:30am, after staying up way too late working on some stuff that I needed to get done I finally was trying to go to sleep when I began to be awakened by Luke's oximeter alarm going off. At first I thought it was him just needing more oxygen, but then realized it was his heart rate soaring way too high. After checking to be sure he didn't have a temperature, I gave him a kiss, prayed with him again and stroked his hair, things that will usually help to settle him down, but none of those things worked this time. I then tried to go to bed two more times before I realized that he must be in pain, his heartrate by this time was up in the 160's.

I decided that I better pick him up to see if I could comfort him by holding him on my lap. We sat out in the living room for about an hour and he finally settled down to where I knew that I could lay him back down and sure enough when I hooked him back up to his oximeter he was back to his normal heart rate. I ended up going to bed around 5 am, Gordy just happened to wake up so I asked him if he would let me sleep until around 10 am, he was working from home today so he was able to get Luke up and bathed for me, what a blessing that was:-)

I actually climbed out of bed around 10:30 am, still feeling severly tired but knowing that I had to get going if I was going to help the kids with their school work a bit, feeling thankful for Amy had got them started on their school work, try to get in at least a 20 minute Pilates workout and my shower before taking off with Luke for his appointments.

We got to the hospital with a few minutes to spare before his CT scan for his hips, then from there took off to get his blood work done and after that went to his GI Dr. appointment. The CT scan went great, he stayed still and it was done within 5 minutes. Getting his blood work was another story, whenever I take Luke in to get his blood work done I always tell the tech to get the best person because Luke is not an easy draw. I don't think the tech believed me until he tried to get a vein in vain for about 15 minutes, he finally called the guy in the next room over to help him and we got out of there 5 minutes later.

Luke's GI appointment was at 2:30 we got there about 10 minutes early, then waited until about 2:45 to be called back and then waited another 1 1/2 hours before we finally saw his GI doc. While we were waiting we saw the dietician who just happened to be very happy to see that Luke had gained back the weight that he had lost in August, plus added an extra 2 pounds. Luke now weighs 50.6 pounds, which is great news, that is unless you are the one picking him up all the time. Thank goodness God has blessed me with strong arms and a healthy back right now:-)

The most discouraging part of today was learning that Luke definitely has at least 4 to 5 gallstones, his GI Dr. thinks that the only solution is have his gall bladder removed. We therefore were set up with an appointment to see a surgeon on October 17th. He told me that gallstones are more common in children that non-mobile that are g-tube fed, because of the continuous feeds, kids like Luke are not able to move the bile out of the gallbladder fast enough, therefore causing the stones.

The thought of another surgery actually makes me sick to my stomach, I don't want Luke to go through another painful experience, I don't want to have to wonder again if he will wake up from another surgery, I don't want to think about spending days in the hospital, I don't want to think about the recovery time, bottom line I don't want another surgery. I know that may sound like a temper tantrum, I guess it is, but it's the truth, the whole truth and nothing but the truth.

One last thing that I find very hard to swallow is the fact that the Dr. asked me today if Luke throws up all the time, I told him only when he is sick. When we got out to the car I started his feeding as we were already very late on that, he began to throw up when I began to feed him and he is still throwing up, he has not kept down anything since we left the Dr.'s office. I keep praying that he's not going to get really sick, but I'm just not sure what's going on.

I keep thinking that I don't have time for another appointment with another specialist, but I guess I don't get to make that decision do I? I have details that I still need to pull together for our mom's retreat which just happens to be in 2 weeks, I have schooling to do with my children, I have had lots of speaking engagements the last few weeks, I really need to get over to my parents to help them unpack the rest of the boxes from their move last month, I have one of my dearest friends in town and we had planned to spend some time together tomorrow as she only visits here every few years, I really need to deep clean my bathroom, go through my closet and drawers, sort through a pile of mail that is about 2 feet high and the list goes on . . . . Oh well, I'm sure your list is just as long, right????

Your prayers would be so appreciated that Luke would stop throwing up, that he would not be in pain, that God would miracuosly take away the gallstones, that his breathing would start to sound better, that Isaiah who's been battling with some sickness this past week would get better, that Gordy and I would be able to get caught up on our sleep and that the details for the mom's retreat, along with the rest of the money will come together soon.

Thank you for your faithfulness,
Luke's Mommy Sue

Here's a picture of Gordy & I out on a date last Friday night. We went to the Lakes High School Football game and then we went to see Courageous, which is one of the best movies I've seen in years. Please find time to go on a date with your mate to see this movie, you won't be sorry!

The Good, The Bad and The Ugly News about Luke

2011-10-04T00:59:00.000-07:00

The good news first: Luke is doing so much better lately, he's a lot more alert and happy, he's been gaining weight again and looking good. Yesterday we were invited over to our good friends the Young's home for their annual Harvest/Apple Pressing Party. They had over 100 people in their home and yard, it was supposed to be an outside affair, but we had one of the worst rain storms we've had in a long time shortly after the party began, Isaiah, Ezekiel and Lily got soaking wet playing outside, but they had a blast:-) Luke did great he stayed awake the entire time, which for him is amazing, you see when Luke is uncomfortable or stressed he will usually just fall asleep so the fact that he stayed awake the whole time tells us all that he had a great time. It was humbling and amazing to meet the people at this party most of them attend a church near by our home and many of them faithfully pray for Luke weekly. As they would come up to meet Luke and myself they would tell us how they have prayed for Luke for many years and many with tears in their eyes would say how wonderful it was to finally meet Luke.

Here's a picture of the day we spent at Mt. Rainier last month

The Bad news to report about Luke is that as I mentioned in my last post he's been having some pretty bad seizures. He's had seizures for a long time but they were usually only caused when someone would touch his right hand without telling him first. But lately the seizures were coming more often, lasting longer and very scary to watch. I actually have seen him have some really bad seizures at night, which has answered a question that I've had for along time, what causes Luke to go to bed with great numbers on his oximeter only to have them all change within a matter of time. When I watched one of the seizures he had at night I saw him go from breathing beautifully to gasping for breath, sneezing and then his o2 numbers would plummet and his heart rate would go up. We started him on a new medication called Banzel, just last week as we had to wait for it to come into our pharmacy as it is a new med to America, it had only been available in Canada for a long time. The medication has some pretty bad side effects, which scare me to death, but getting the seizures under control is more important right now than the side effects. It will take 5 weeks to get him to the full dose as it is such a potent medication it would be dangerous to start him off on the full amount right away.

The ugly news came as a big surprise today when I called our insurance company and found out that they are no longer paying for Luke to have OT/PT services. When I took Luke into see his OT last week he mentioned that the billing agency for the hospital told him that Luke no longer had PT/OT services, after calling around he thought that was incorrect information, but no after spending about 30 minutes today on the phone I found out that our policy no longer covers his diagnosis. It sent me into a real spin as I realized that we could be getting a HUGE bill from the place that he's been going to the last few months. I was also so sad to realize that something that has benefitted Luke and helped him will no longer be available to him. It's sad to think that if Gordy and I made less money we could get services for free, kids that have SSI or DSHS through our state get at least 1 visit of each PT/OT/ST a week. We get NONE because we are middle class Americans. Our Medical system is broken and I'm pretty sure that the new OBAMA care is not going to fix it. Everytime Luke walks into the Children's Therapy Unit where he was going for PT/OT it would cost about $500 a hour, our insurance would pay their adjusted amount leaving us with a bill of about $80 a visit, now we would have to come up with the full amount, not going to happen:-( Oh well, I just hope that we will be able to successfully appeal this and get it to return.

Can you spot Amy, Luke, Lance and myself off to the right of the bridge??

Once again I'm up way too late blogging tonight, I'm hoping that since I just went to change out Luke's oxygen tank that he will not alarm anymore tonight so that I can get a full night of sleep, it's been way to long since that has happened. Oh wait the night is already about 1/2 way over maybe that will happen tomorrow night, I can always hope can't I?

Love in Christ,
Luke's Mommy Sue

PS Just wanted to let you all know that the money for the retreat has been slowly but surely coming in, not quite there yet but a whole lot closer, PRAISE GOD!!

PSS Also wanted to let you know that I'm going to be on 24/7 MOMS webcast tonight. Here's the link:

Double The Fun Double The Giveaways - This week on 24/7 MOMS Live

Double The Fun this week with my long time girlfriend Sue Searles who will share 21 Tips To Raising Great Kids and Double the Giveaways as we kick off the holiday season early.

Chatting, winning and being in the MOM know are what it is all about. Don't miss out join in the mom fun.

Two shows Two times right here at 24/7 MOMS the TV show for moms on your computer at www.247moms.com The mom chat and fun all begins on Tuesday night at 6pm PST or 8pm PST .

Sometimes the hardest days can be the most rewarding days

2011-09-30T02:02:00.000-07:00

I'm pretty sure that anyone out there that has been reading Luke's blog for a long time can agree with me in saying that life with Luke is often hard and challenging, but it is also rewarding and a huge blessing. Gordy and I often say that Luke and the word "easy" don't ever go in the same sentence, it's the truth and nothing but the truth. I would also hope that if you've been reading this blog for many years you would also say that I try not to be too negative, it really does go against my nature to be negative, I'm usually a pretty positive person, though there are times that in "keeping it real and honest" that's almost impossible to do.

Yesterday was one of those days that was very hard, but at the same time rewarding. I think I mentioned in a previous post sometime ago that I was asked to be on the Family Partnership Council at Mary Bridge Children's Hospital in Tacoma. If and when Luke has to be in the hospital, Mary Bridge is in my opinion is the best place for him to be during those necessary visits. Part of being on the Council is sharing at staff training meetings, I have had the opportunity to share at 3 meeting for the nurses on the medical/surgical floor and then yesterday I shared with the nurses and RT's from the Pediatric Intensive Care Unit.

I had a feeling that this was not going to be easy and I was right! It was extremely hard to go back to the days that Luke has spent in the PICU, remembering so vividly the first night we spent in there is like asking you to remember your worst nightmare. At all these meetings I was asked to share a time when I felt like our family/Luke's emotional needs were met and then share a time when I felt like they were not met. I was shocked to learn that one of the nurses still checks up on Luke's blog sometimes and she remembered in detail like it was yesterday when Luke was in the PICU. It just goes to show you, that you never know who is keeping up on your blog/life, it's humbling and scary to think that people care enough to continue to follow along with us on Luke's journey. I feel pretty confident that the impact of my sharing our families experience at the hospital, well hopefully make other families that stay at Mary Bridge even better than it was before, at least that is what I hope to be true and why I got involved on this council.

One other thing that has been really hard to do lately is ask for people to help share my vision in what I'm wanting to do for the Mom's that are coming to the PONDS retreat in October. This year people don't seem to be as receptive as they were last time and I say to myself of course Sue, people are having challenging times right now just making ends meet in there own homes why would you think they would have any extra to share for this retreat. So far God has put it on some peoples hearts to share what they can and we are now at about $500 raised, which is just enough to pay for the food, some of the gas costs and the house maintenance/maid fee.

Here's a picture of the Mom's that came last year to our POND's retreat
This year we will have 5 new mom's to add to the picture:-)

In the past 7 years of writing this blog Gordy and I have tried to make it clear to people that God has and continues to bless our family and even though our medical costs can be out of sight some months, they have always been paid on time. I really do believe in my heart that it was God who laid it on my heart to put together this retreat and when God calls you to do something He ALWAYS supplies the means to do it. Therefore I guess the only reason I asked for help from y'all was to allow you to share in the blessings you would receive by giving to this retreat that was started to bless these mom's that live in EXTREMELY hard circumstances. I realize that I am one of the mom's benefitting from the retreat therefore some of you may of thought it was selfish for me to ask for money for myself to have a fun weekend away, but really that was not my heart.

I say all of this not to guilt you into giving towards this retreat, but to help you see my heart in asking you to share this burden with me. I have no worries that God will provide the money, He always does! Truly the greatest thing you could do for our retreat is PRAY, please pray for the mom's to have peace to leave their "fragile child", please pray for them to find the rest that they so desperately need, please pray for their families to stay healthy, especially their child that has suffered the near drowning accident, please pray for their finances to come in to pay for their airline tickets to get there, please pray that we will be able to encourage each other and give each other the hope that we desperately need to get through another day, week, year, just please pray, it's the most important thing you can do for us moms!

Love in Christ,
Luke's Mommy Sue

PS Luke goes in for his GI ultrasound tomorrow, please pray that all will go smoothly and that they will not find anything wrong. Luke also starts back with one of his all time favorite OT's tomorrow afternoon who was transferred to Mary Bridge hospital a year ago, so it will be a very full day of appointments. I will let you know soon how things turn out.

Opps, I posted too soon about Luke's GI study, seems they may of found gallstones:-(

2011-09-26T13:07:00.000-07:00

I got a call this morning from the GI clinic saying that they may of found gall stones during his lower GI study. I take him in on Friday for an ultrasound, kicking myself that I asked to have it cancelled as we could of already been done with it last week. Would sure appreciate your prayers that they would not find anything and that we can get beyond all these GI appointments.

Thanks,
Luke's Mommy Sue

Luke's GI study results + new seizure activity + casting opportunities shot down before even being tried = A way too long post all about Luke

2011-09-26T01:53:00.000-07:00

Finally a long overdue update about Luke's recent GI tests that he had done. The Endoscopy procedure came back showing no problems, except for perhaps some yeast growing, but even then they weren't 100% that is what they saw. The Dr. perscribed Nystatin for the yeast infection, but after trying to give it to him in his mouth twice I came to the conclusion that it was not worth having him choke and aspirate on it and to be honest I didn't see any signs of yeast infection in his mouth.After hearing the news that all looked fine I asked the Dr. if we still needed to do the ultrasound and lower GI x-ray study and he said that we could skip the ultrasound but he still wanted to do the lower GI empyting study. That happened a week ago and we won't hear the results from that until Luke's GI Dr. appointment on October 4th. I figure though if they had found anything really bad they would of contacted us by now.

Here's Luke and I at the hospital during the GI study waiting for another x-ray to happen

The lower GI study they did was a very long and tedious procedure. I had to have Luke at the hospital by 8:45 am and we didn't leave the hospital until around 2 pm. They started by putting barium down his g-tube and then taking an x-ray, then we had to take another x-ray every 30 to 45 minutes for the next few hours to see how fast the barium was going through his GI tract. Needless to say I had quite a work out as I had to lift him up out of his chair onto the table over and over and over again. I hope that is the last time we have to do one of those studies.

Here's Luke still at the Hospital 4 hours later waiting for another x-ray to happen

I'm so happy to say that Luke seems to be doing better lately than he's been in a long time. We actually got to go to church two Sunday's in a row, which was the first time that's happened in months. That said we still have to deal with the challenges of him alarming off and on all night long, as tonight it's been especially bad for the alarms going off, that is why I'm sitting here at 2:30 am blogging. Though I'm trying not to complain about it since Gordy let me go to bed early last night and I got to sleep an entire night without any interuptions, boy did I need it I was severly sleep deprived.

Luke's been having some bad seizures lately, so after calling his Neurologist it was decided that we are going to try out a new anti seizure medication called Banzel. We are just waiting for the prescription to be filled as our pharmacy doesn't carry this medication. I will be honest I have put off calling about this problem for awhile, I just don't like what seizure meds do to Luke, but Gordy and I have come to the conclusion that we need to get these seizures under control. I hope and pray that this medication will be the answer to helping Luke stop having these seizures without causing him to lose any attentiveness that we've gained over the years.

At the beginning of the summer I had talked with Luke's rehab Dr. about perhaps splinting his ankles to see if we could help train his feet to go back to there natural place, you see his feet have been pulling up into his legs lately because of his muscle tone issues. I found out from his PT last week that she along with Luke's Dr. and one other PT at the place Luke goes to for Physical Therapy talked without me there about whether this type of casting would benefit Luke. To be honest I wasn't very happy that I wasn't involved in this meeting as I would of loved to give my input being Luke's mom and knowing him better than they do of course. They decided to once again to do nothing for Luke's legs, ankles, feet, etc. which has really upset me because you see they put all kids that have suffered from near drowning accidents into the same catagory, you know the catagory of being hopeless, erk. After our talk last week it was decided we might still try it as it does seem to be one of the few options we have for helping Luke's leg issues. I told his PT that if we continue to do nothing Luke is going to get to the place were we are no longer able to take him our of the house as he won't be able to sit in a car seat anymore because of his legs not bending. That to me is not an option, we have always tried to include Luke into most of our family outings and which is not an easy task but one that we realize is vital to keeping our family together. I will let you know of course what they ultimately decide about the casting issue.

Lily asked me to take this picture of her and Luke while we were visiting my mom and dad last week. It's so nice to have my parents so close they are only 5 minutes away now.

I continue to hope, believe and have faith in God for Luke's complete miracle healing. I have been encouraged by some amazing prayer times at some evangelistic meeting I've been attending lately. God is faithful and I believe Luke will walk and talk again one day, my greatest hope is that it will be soon.

Love in Christ,
Luke's Mommy Sue

PS Please continue to pray for the Mom's coming to the retreat next month, I listed all their names in my last blog post.

Announcing our 2nd Annual Retreat for Mom's with a child who has suffered a near drowning accident. Would you like to help??

2011-09-21T22:32:00.001-07:00

We are in the process of planning our 2nd Annual Retreat for Mom's who have children that have suffered from a near drowning accident. We knew last year when our first amazing retreat was over that we would have to do it again next year, so we've been planning it all year long. To say we are all getting really excited would be a understatement, most of us are ecstatic!!

This retreat is desperately needed for so many of us mom's this year as many of us have had some really scary and hard circumstances happen this past year. Many of our children have spent time in the hospital this past year, some of us mom's wondering if our precious children will survive another sickness. Just try to imagine for a moment what's it's like not knowing if you will get another day, week or year with your precious child, hearing Dr.'s tell you that your child is beyond their help, knowing that it's only God's grace and healing hand that allows them one more day with their family.

The stress that many of us mom's live with on a daily basis is severe, even when our children are healthy we still have to deal with the fact that our children are unable to walk, talk, move on their own, feed themselves, go to the bathroom by themselves or communicate their basic needs to us. Then add on top of that the Dr.'s appointments, PT appointments, OT appointments, dealing with insurance companies, fighting to get services for our children, pleading for help with their education, while some of the mom's are fighting to keep their marriage together and constantly making sure that our other children feel loved and are just as important as our child who ALWAYS needs our attention. It's a constant battle just to find a moment to ourselves, let alone find time to take care of our physical needs. Last but not least many of us mom's are severely sleep deprived. YEP we really do need this time away!!

Details, details, details, here are some details about our retreat:

It will be October 20 - 24 2011

Yes we have added one more night this time

At Suncadia Resort in Eastern Washington,

once again we've had the gorgeous Vara home donated to us for the weekend

We have 15 mom's coming this year

10 Mom's returning

5 new Mom's coming for the first time

Mom's coming from Hawaii, Michigan, Georgia, Oklahoma, North Carolina, Arizona, California, Utah, Wisconsin, Colorado and me from Washington 11 different states in all

Lindsey who has Santana nd 12-16-2006 from Arizona

www.prayforsantana.org

Shauna who has Christian nd 7-8-2009 from Arizona

www.christiansjourney.org

Jill who has Seth nd 9-15-2002 from California

www.prayforseth.com

Julie who has Joey nd 1-16-2007 from California

www.josephslifejourney.blogspot.com

Dawn who has Collin nd 6-23-2001 from Colorado

www.caringbridge.org/co/collinsmiracle

Amy who has Jake nd 3-2-2006from Georgia

www.carepages.com/carepages/JacobVinson

Joanna who has Ethan nd 5-12-2008 from Georgia

www.caringbridge.org/visit/ethanbarona

Kehau who has Caleb nd 3-6-2007 from Hawaii

prayforcaleb.blogspot.com

Tiffany who has Abbie nd 5-3-2004 from Hawaii

www.prayforabby.com

Janet who has Travis nd 5-21-2007 from Michigan

www.carepages.com/carepages/TravisTrail

Erin who has Aidan nd 2-16-2008 from North Carolina

prayforaidan.blogspot.com

Annie who has Izzy nd 5-16-2004 from Oklahoma

prayforizzy.blogspot.com

Teresa who has Samuel nd 7-19-2005 from Utah

http://samuelsmiracle.com

Sue who has Luke nd 8-30-2004 from Washington

howsluke.blogspot.com

Lisa who has Brock nd 8-1-2008 from Wisconsin

www.caringbridgbrockchereke.org

Because of the fact that Luke has had so many challenging days, I mean weeks this past few months I have been negligent in letting people know that once again we could use your help this year with costs of the retreat. Of which I'm so happy to say that already a few people have either donated some money or said that they are going too:-) I'm not planning to do as much as we did last year, instead of spending a day in Seattle we will be going to a little Bavarian town called Leavenworth. We also plan to spend more time at Suncadia this year as it is such a beautiful resort. Here is my estimated budget for the weekend:

$250 for food, I'm hoping to get some of the food/meals donated

$300 for gas we have airport runs on Thursday, Friday, Sunday and Monday, it's 90 miles each way from the airport to Suncadia

$150 for our day in Leavenworth

$250 for a lunch at the Suncadia Winery Restaurant

$150 for the cleaning/maintenance cost for the use of the home

$50 for BUNCO prizes

Total $1150 - $200 that has already come in = $950

My goal last year and this year is to make the cost of the retreat free, except for airfare to get here, will you help fulfil my dream once again? I know that many of you are thinking that you not able to give a lot, just remember a when everyone does a little it equals out to be a lot:-) If you are interested in giving please e-mail me at howslukedoing@yahoo.com, I will give you my address, thank you.

Last but not least I would really appreciate your prayers, they are more desperately needed than your donations. Some of these mom's have never left their child for more than a few hours at a time and I know that to do so is a HUGE feat for them, also PLEASE pray that their children stay healthy so that they will be confident in knowing that leaving them at home will be okay. Thank you in advance.

Love in Christ,

Luke's Mommy Sue

PS I know that I need to do a update on Luke and I promise to do that in the next day or two, just know that he is doing pretty good right now.

I know I've said it before, but I have to say it again, life has been way too busy lately!

2011-09-10T23:41:00.000-07:00

Life has been soooooo very busy lately. Let me see . . . Since I last blogged I helped moved my parents, had a way too much fun Labor day weekend, we went to NW Trek on Friday, the beach on Saturday, Seattle on Sunday and finished off the weekend at Mt. Rainier National Park on Labor day, had appointments to go to, a speaking engagement, endoscopy procedure for Luke and the list goes on . . . . .

Here's our group up at the top of Mt. Rainier at Paradise

Natalie was in charge of the SMORES the night at the beach, Yoli is being her silly self

Daniel, Sarah and thier cute little dog at the beach bonfire, after spending the say surfing.

Luke and I after I had pushed him up the a very steep trail up beyond Paradise lodge

Amy & Lance at the Mountain

Sarah and Daniel at the entrance to Mt. Rainier National Park, it was her first visit there

Check out this tree, a beaver did this, we saw a huge beaver dam on one of our walks up at the mountain.

Here are some of us after we ate our lunch getting ready to go on a small walk at Longmire.

Crazy times in the van, the only person that wasn't there was Josh, he decided that he needed to stay home to rest up for his week of work.

Gordy, Luke and I waiting for Luke to get his IV done so that they could put him out for his endocospopy procedure.

Luke was doing really good for awhile, then we took him on part of our too much fun weekend, which ended up being too much for him, needless to say he had a hard night on Monday night and part of Tuesday, then he seemed to get better again. He was doing really good until his procedure on Thursday, which brought good news in the fact that they didn't see anything really wrong with his stomach or digestive tract, but after the procedure he has had a lot more secretions. The Dr. prescribed Nystatin because of what he thought was some yeast problems in his esphogaus, though we won't know for sure until the results come back from the tests they are running on it. Anyway I was supposed to give him 2 mls of Nystatin in his mouth twice a day, but after 7 years of not having near to nothing in his mouth Luke doesn't swallow very well, he just makes horrible faces and spits it out or chokes on it. Last night was quite the challenging night as I was once again having to suction him most of the night. Tonight he seems to be doing better, thank goodness.

Next week we are starting our 17th year of home schooling. I'm hoping to be more involved in the schooling this year, after letting either my sister Cindy, Amy and Natalie do most of it the last few years of which I'm extremely thankful to them for all their hard work. This year Natalie has said that she will come over twice a week to help with Luke in the morning and Cindy will continue to come twice a week, freeing me up to focus on schooling the other kids. Our number one focus this year will be to see how many Bible verses we can memorize as I feel we have lacked in this area the last few years, then of course we will still have math, reading and writing each day, with science thrown in there and some living history readings, piano lessons once a week, the YMCA twice a week and I'm sure there are other things that I'm forgetting right now. I am also going to try to go to the YMCA with the kids this year, this will be first time I'm back at the Y since Luke's accident, a lot of the people there have thought at times that Amy was the mom, since she was so faithful to take them each week, of which I'm so grateful for her help.

I really feel like I need to make homeschooling more of a priority in my life to pour into my other children's lives, Luke has dominated my life for so many years now, not because I have wanted it that way but because it has needed to be that way. Would you be willing to pray that God will allow me to make these changes in my life, that some how I will be able to balance the need for all of Luke's appointments and medical needs with the needs of my other children? I'm going to give this new schedule at least a 3 month period at which time I will re-evaluate how it is all working out.

I have to have Luke at the hospital at 7:45 am Wednesday morning for a ultra sound of his stomach and digestive tract and then we go in for a x-ray study of watching how long it takes him to digest his food. Needless to say it will probably be a full day there. Will you join with me to pray that he does fine and that everything shows to be working fine? I will let you know how things turn out.

Love in Christ,
Luke's Mommy Sue

7 Years Ago Today

2011-08-30T10:57:00.000-07:00

Here's Luke a month before his accident

7 Long years ago I woke up on this day, never in a million years realizing that my life would change forever. That day I had 6 healthy children, pregnant with my 7th child. My precious little toddler boy Luker man was running around the house, laughing, playing, full of energy in life. That day I put him down for a nap with the other boys, my last memory of Luke before the nightmare began was him looking at books before falling asleep. My next memory was frantically looking for Luke all over the house only to have Amy find him dead in our back yard pool. I remember screaming, crying, trauma, praying to God for a miracle, asking God to bring Luke back to life just as he had done with Lazarus so many years ago. Thankfully God heard our cries for a miracle and He brought Luke back to life.

My last memory of Luke before his accident

Our family in Mexico on a missions trip in 2004 a few weeks before his accident

Our family in Mexico during our last missions trip in July 2011

Everyday since that day I wake up in the morning wondering if today will be the day that God finishes the miracle that He begun 7 years ago, if today will be the day that Luke will once again walk and talk. My life was changed that day, I went from a carefree life, having all my children healthy, rarely having to go to Dr. appointments, to a life full of medical appointments, medical bills, hospital stays, surgeries, therapy appointments, Hyperbaric treatments, more days filled with medical needs than not.

The day we left the hospital after being in there for a month

This is April 27, 2005, the day Luke got his trache out

Here is the first smile we got on camera almost 2 years after his accident

Since that day I've came closer to God than I thought was possible, learning how to rely on Him for the life of our precious child, realizing that God loves Luke and all my children more then I can even begin to phathom. Learning in a way that I could of never imagined how to cry out to God and expect miracles, leaning on God and trusting in Him, knowing that HE is our only hope for Luke's life to ever be the same again.

Luke this past summer at Yosemite

I will never, ever, ever, ever give up believing for a miracle for Luke. I can not, I will not I know that God is able, He is the miracle working Father, for I know that according to the Bible He never changes, He is the same, yesterday, today and forever. Won't you please join with me in believing for a miracle for Luke today. It's comforting to know that when we are weak, He makes us strong, I will admit that I have been too weak to go on many days these last 7 years, but I've never been alone not for a single second of time, God has carried me many days and your prayers have helped me to continue on this journey.

Our last family photo taken at Daniel and Sarah's wedding last year

I'm so thankful that I have not had to go on this journey alone, thankful for my family and friends that have been there for me each step of the way, thankful for all of you faithful blog followers that have carried us in your prayers, thankful to the medical community for their faithful care of Luke, thankful to God for never once leaving my side. THANKFUL that God chose to bring Luke back to life, thankful . . . !!

Love in Christ,
Luke's Mommy Sue

Keeping it real, as I share my honest thoughts today

2011-08-28T11:23:00.000-07:00

My emotions are torn in two today, on the one hand I LOVE every minute I get to spend with my precious Luke man, on the other hand I think that he would be so happy to be in heaven today, running around, laughing, playing, singing, talking. . . It breaks my heart to see him suffer as he does, not able to tell me what hurts, not able to get up and play with his brothers and sisters, not able to sit, walk or talk . . . I recently read a book about how wonderful heaven is and it made me realize once again that we should look forward to the day we will go there, to think about no more pain, no more sickness, no more tears, it really does sound heavenly doesn't it?

Thinking about the fact that we've been walking this road for 7 long years on Tuesday, is overwhelming. I know that I'm physically, emotionally and spiritually exhausted, this past month has been extremely hard. Imagine seeing your child suffer day after day, to battle the thoughts in your head each and everyday about your child progressively getting worse, to know that without a touch from God your child is never going to get better. I know that is not faith talking, I know that God is bigger than any health problems that Luke is experiencing, I also know that faith is believing what we cannot see, I know God gives us the strength we need each and every day, I know these things, I just can't seem to live them out right now.

I also know that the only reason that we have Luke today is because of the powerful prayers that we have all prayed. The only reason our family stays as strong as it does is because of faithful prayer warriors that have never stopped praying for Luke's healing or for our family to continue on this journey that we've been on for so many years now. Words can not even begin to express our gratefulness and thankfulness by your faithfulness in keeping us in your prayers so often. I'm humbled each and every time I hear someone tell me that they still pray faithfully for Luke and our family. THANK YOU, you are more appreciated than you can begin to know.

Love in Christ,
Luke's Mommy Sue

I have come to the conclusion that I no longer like mysteries, now that Luke's life has become one:- /

2011-08-25T23:06:00.000-07:00

I used to think that I liked mysteries, until Luke's life became one:-/ As mentioned in my previous post on Tuesday I took into the Dr. who requested blood work and an x-ray. Then on Wednesday after Luke's Pediatrician consulted with the infectious disease Dr. it was decided that Luke was still dealing with some kind of infection so I took him for a powerful shot of antibiotics, along with picking up a prescription for another 10 day course of strong antibiotics to bring home. While I was there I ran into his Dr.'s office to see if he could test what I was seeing in his suction canister, it looked like blood to me but I wasn't sure. He performed a quick test and sure enough it came back positive for blood. He prescribed Ranatadine, which is a acid reducer medication for Luke and told me to follow up with his Gastronologist.

I waited all day long for a call back from the Gastronologist office and wouldn't you know it, it came the first time I put my phone down while I was putting Luke back into his car seat. The message I heard on the phone sent me into a bit of a panic because the Dr. was telling me to take Luke into the ER, also telling me to pack an over night bag as he didn't think this would be a quick in and out visit there. I immediately tried to call the Dr.'s office back, but of course they had waited until they were closed to call me, so I tried the after hours phone number with no luck. Gordy and I discussed what to do when I got home and we both decided that Luke did not look like he needed to make trip to the ER, just because this Dr. was too busy to see him that day. Luke seemed to be doing better and we decided that if we saw anymore blood at all we would take him in right away.

Needless to say I went to bed at 8:30, as soon as I had all the kids in bed. I was so exhausted I was shaking, my heart was racing and I felt sick. I told Gordy to let me sleep a few hours and then I would take over again. But no, my sweet husband knew that I needed a full night of sleep so he took over Luke duty last night. And praise God it ended up being one of the best nights Luke has had in a very long time, he didn't alarm once and didn't need any extra oxygen, no more blood was seen and he didn't even need to be suctioned at all, all night long. I ended up getting close to 10 hours of sleep, just what I needed.

This morning I got a call from Luke's Pediatrician that sent me into a spin again asking me why I wasn't at the hospital with Luke. I told him that Luke had had a phenomenal night, that we hadn't seen anymore blood from his g-tube and that we didn't feel like he was sick enough to go to the ER. I promised to call his GI doc that morning and get an appointment. He was fine with that but he wanted a call back by noon telling him what our plan of action was. Thankfully the GI nurse called at 11:00 saying that the Dr. could see him if we were there by 11:30, I told her I would do my best to get there by that time, since it was at least a 20 minute drive. I made it there by 11:38, then waited an hour to see the Dr.

His GI Dr. looked him over, checked out his labs and told me that he was expecting to see him looking a look worse than he was. He decided that we are going to be doing a bunch of procedures over the next two weeks to be sure that all his digestive system is working okay and to see what could of caused the bleeding. He also told me that we had made the right decision in not taking him into the ER the night before, that was music to my ears.

We also saw the dietitian who was concerned that Luke has not gained any weight in the last year. I told her he had gained some but had lost it during this sickness that he's had recently. We've decided to up his feeds and are hoping to see some weight gain soon. She also said that she wanted to get his blood tested for what his vitamin levels were like, so that meant another blood test today. Poor Luke had three days in a row with needle pokes.

Luke is having another great night tonight, which is such a gift from God, since I told the boys that they could have some friends over to spend the night. I am going to get some sleep and hope that Luke continues to make good progress. Thank you for all your prayers, they really are what keep us going.

Love in Christ,
Luke's Mommy Sue

Blood in Luke's g-tube + Constant suctioning - A Desperate Plea for Prayer

2011-08-24T11:50:00.000-07:00

Luke could really use your prayers today. Last night was another nightmare night with constant suctioning and alarms going off. I then noticed around 4 am after giving him some water in his g-tube he threw up what looked like some blood and had dark stuff coming out of his g-tube. I've already put a phone call into his Gastronologist, waiting to hear back from them on what we should do, nurse was thinking that I will probably need to take him in today.

I'm also trying to patiently wait to hear back from his Pediatrician, who said he would call today with the results from all the lab work Luke had done yesterday.

I am desperate for some answers for what is going on with Luke, I just don't know how many more all nighters I can endure. I'm leaning hard on God's supernatural strength today, it's the ONLY thing that has given me the strength to get out of bed and be able to calm my racing heart and settle the sickness in the pit of my stomach.

Please join with me today in praying for a miraculous touch from Jesus, He is able!

Love in Christ,
Luke's Mommy Sue

Back to reality after a wonderful long weekend full of God's amazing "gifts" of sleep and refreshment

2011-08-23T04:22:00.000-07:00

A beautiful sunset near Cannon Beach, OR

Most of you know, that is of course if you read Luke's blog often that sleep is something that has become very precious and rare for me these days. That is why when I heard about a homeschool workshop that was being offered in Portland, OR this past weekend I jumped at the opportunity to attend, not only hoping to go to renew my reasons for homeschooling, but also to get a few nights of uninterrupted sleep. So Yoli and I left around 8 pm Friday night, after her birthday party was over to drive down to Portland, getting there around 10:30.

Here I am taking a much needed break to go for a walk, those large building you see in the distance is downtown Portland, OR

I will be honest even when I'm not hearing Luke's alarms go off all night it is still challenging for me to find sleep, but I did find it after tossing and turning until close to 2 am that night. We then had to get up early Saturday morning to make it to the Homeschool workshop by 8:45 am. The workshop was good, though not exactly what we had hoped for, I guess since we've both been homeschooling for many years now we both know what works for our style of learning and the workshop just didn't seem to match up to our style. After sitting for about 4 hours of teaching I knew that I needed to get out for a walk or I would be snoring during the next session. I went for a walk around a beautiful neighborhood in Portland and even though it was in the 80's I throughly enjoyed my walk.

Ecola State Park in Oregon

We both knew that we had planned to stay two nights away, so we decided that since it was such a beautiful day we would head out to the beach, so we drove about 2 hours and ended up at Cannon Beach. It was absolutely gorgeous there!! We sat eating clam chowder at MO's looking at the beautiful sights about us, marveling at God's goodness to us to allow us this extra night of rest. After checking at many of the hotels in the area we found out that all were booked because of a motorcycle convention going on, so we ended up having to drive south about an hour to find a hotel room. That drive was another "gift" from God, as the sun was setting and we were blessed to see a beautiful sunset. That night I was able to get to sleep around midnight, waking up feeling much more refreshed, ready for a quick walk before getting ready for church.

Yoli and I out for our walk along the bay in Girabaldi, OR

We found a small Assembly of God church in Girabaldi to attend. The service was another "gift" from God as we were able to bask in the wonderful presence of God during the worship service and then hear an amazing message about Noah's obedience to God. I felt the touch of God as all the pain from my knee that has been hurting me for many weeks go away, it was amazing!!

Here I am standing in front of the little church we attended on Sunday morning

Yoli had mentioned maybe we could stay one more night, so that we could enjoy that day without feeling rushed about going home and after talking to my wonderful husband, Amy and Natalie they all decided that they would take on Luke duty one more day so that I could get one more day of rest, another "gift" from God. After we enjoyed a delicious lunch at the Tillamook Cheese factory, we spent the day relaxing at another gorgeous beach, where I had the pleasure of building a little rock statue.
Sunday night we stayed in Seaside and I was able to go to sleep even earlier and then blessed to sleep in until close to 10 am. I woke up feeling so refreshed and ready for another walk/hike. We drove out to Ecola State park, where I went on a short 1 1/2 mile hike from Ecola to Indian beach. The whole time I was on my walk I kept thanking the Lord for this "gift" of another beautiful day and even though it was very windy and chilly it was still an amazing day.

We drove home the long way getting home around 9 pm. Gordy went to bed almost immediately and Amy shortly after him as they had not gotten much sleep with me being gone and here I sit at 4 am getting up every 10 to 15 minutes all night long to suction Luke. Yes, I'm exhausted, but I'm also so very glad that I had a few nights of good sleep.

Today I will be calling Luke's Dr. to take him back in for another appointment. I don't think that he's kicked the pneumonia yet. I'm trying so hard not to be anxious about what I will find out as I just don't know what they will be able to do for him as he's already been on 3 weeks of antibiotics. PLEASE pray he get's better soon, I just don't know how long I can go on without sleep at night, even though I'm so thankful for the respite and sleep I did get!

Love in Christ,
Luke's Mommy Sue

I feel like I am living through one nightmare after another, Luke is doing horrible at night once again.

2011-08-17T00:14:00.001-07:00

Sometimes I wonder why I ever post good news, yes I know that sounds quite negative, but it's true. After posting my last blog entry Luke did fine that day and the next but by Saturday night we were back to nightmare land. I can't remember the last time I had a full night of sleep, I love the fact that people all have great idea's on what to do and believe me I try most of them, but as of now none of them have worked, though tonight he is doing a tiny bit better.

On Monday I sent an e-mail off to Luke's Pediatrician explaining what was going on with Luke; telling him about the fact that when we would hook up his feeding tube to his g-tube button, it looked like blood was coming out, not fresh blood, but dark black, tinged with red fluid. I also told him that Luke has been sounding horrible at night, needing extra oxygen and to be suctioned every 10 to 15 minutes all night long. I thought perhaps maybe Luke was anemic because of the fact that he's needed so much extra oxygen lately also wondering if indeed the dark fluid coming out of his g-tube was blood, would that be the cause of his low oxygen numbers. After talking with his Dr. we decided that blood work would be a good choice right now for Luke.

I took him in yesterday afternoon and almost immediately learned that Luke's hematocrit was fine, so we knew that wasn't the cause of his problems. Today I got a call from his Dr. saying that his White blood count was very elevated at 19, normal is between 4.5 to 13. Which told us that Luke is still fighting some kind of infection, whether that's pneumonia or something else we are not sure. His Dr. contacted a infectious disease Dr. and they both decided that Luke should finish off his current antibiotic and if he's still not doing better than we should go in for another blood test and x-ray. That is of course as long as he doesn't get much worse, which at that time I would take him in right away.

PLEASE pray that Luke get's completely better, it breaks my heart to see him like this and I know that he is so uncomfortable. I am also in desperate need of a full night of sleep, I hate the fact that I've been getting to bed around 4 to 5 am, this messes up my days as I then need a few hours of sleep, causing me to completley lose my mornings by the time I get up. I've also been feeling a bit shaky, confused and teary which I know is due to the fact that I'm severly sleep deprived.

Love in Christ,
Luke's Mommy Sue

PS On a good note I've already had people contacting me about donating to our retreat again this year and just got a check in the mail today. It's exciting to see God's provision for these mom's who like me need a break from the stresses that they live with everyday of their lives. Please pray about helping out this year, every little bit adds up to make a big bit:-)

The Big News of the Day is Luke is doing better, Hallelujah!!

2011-08-12T13:12:00.000-07:00

Here we are on July 4th, in the Redwood Forest. We drove most of that day, me sitting in the back seat with Luke, he was sick and on oxygen. It was a very hard day.

Luke is finally doing better, hallelujah! Yesterday he actually spent most of the day awake and was off oxygen at times through out the day, today he hasn't needed any extra oxygen so far. Two days ago I contacted his Dr. and asked him if we could try a different antibiotic and also some steroids, so I'm not sure if that is what is making the difference or if he has just finally turned a corner for the good. I'm sure that the prayers that so many have been praying have made a huge difference too!

Here is Luke in the back seat of our van, as you can see he's hooked up to his feeding tube, that was to feed him of course but also so that we wouldn't throw up. He also has oxygen going in his nasal canulla. It was warm that day so I took off his pants to keep him cool, you can't see it but he was seat belted around his waist. That day and the next were very, very hard long days.

To be honest with you these past two weeks have been exhausting, getting only a few hours of deep sleep a night is just not enough. Both Amy and Natalie have been at camp all week and my sister Cindy went down to help her son move, so Gordy has had to work from home most days this week just so I can get a few hours of sleep each morning, thank goodness he has that option. Thankfully my parents volunteered to take the kids to NW Trek one day and my wonderful friend Yoli took the kids to some parks this week, it helped make the week go smoother with them having something to do, while I had to be at home all the time with Luke.

Here's Luke at the beach in San Diego, he did so good there!

Last night was bad again, I only got about 2 hours of sleep since I had to get up early today to go to a Dr.'s appointment for my knee. My Dr. thinks I just sprained it when I feel during my fall on the mountain, it doesn't hurt while I'm walking or standing but when I sit down or lie down it starts to hurt horribly. Thankfully she said I don't have to stop walking, but I do have to stop jogging for now. I'm happy that I don't have to give up my daily walks I feel they are what keep me sane at times, it's a great time to put on some worship music and spend some time enjoying the beautiful scenery and some much needed time in prayer.

Here are the kids and I in the Shasta Caverns. I know it is a dark picture, but it was very dark in there. I was bummed that day to learn that Luke could not go with us since they had close to 1,000 stairs for us to climb during our tour. Gordy stayed at the trailer with him.

I'm still hoping to come up with the money to go to the MOBILE (Mom's of Brain Injured children Loving Evermore) conference in Atlanta in September. I know that if it's God's will for me to be there the money or miles will come in, I'm anxiously waiting to see God's provision.

I took Isaiah and Ezekiel to Legoland, we had a blast there riding on all the rides and playing with some of the millions of lego's they have there. I wanted to take Luke with us, but I learned my lesson after trying to take him to Disneyland, I knew that he would not enjoy the day.

I'm excited to announce that to you that we are planning another retreat for Mom's that have children that have suffered near drowning accidents. It's going to be at the same home again, this time October 20-24. We already have 16 mom's coming and we are at full capacity, most of the mom's from last year are coming back and we have quite a few new mom's that will join us this year. It's so exciting to see it all coming together. Once again I along with some of the other mom's will be raising money for the weekend so that we don't have to charge the mom's anything for coming, they will just need to pay for their airline tickets. I will be blogging more details very soon, but if you already know you would like to support this retreat again this year please contact me, my e-mail address is off to the side of the blog.

Love in Christ,
Luke's Mommy Sue

Here are the kids posing with Santa and Denise the camp activity co ordinator at the last campground we stayed at on our trip in Newport, OR. They were celebrating Christmas in July, so they had all kinds of fun games and activities planned that week.

Sunday was a day that I don't think I will ever forget!

2011-08-09T01:31:00.000-07:00

Here is a our family + Karlos:-) getting ready to go into Disneyland back in June. This day was one of the hardest days of our trip, Luke did not do well in the hot sun.

If you been reading my blog this past week you have to know by now that Luke was/is having a rough week and I too was having a very trying week myself. After being up all night Saturday night, responding to alarms, my Sunday morning started way to early. I knew that I needed to get up to help get the kids ready for church. Zeke was asking what was for breakfast, Isaiah was trying to figure out what to wear and Lily was getting into the tub. I had gone to bed the previous night not feeling so good, I had a runny nose, my throat was sore and my back was very, very sore, along with my leg hurting and I woke up not feeling so great either.

Gordy had taken over the alarm watch around 4:30 when I finally got to bed, so he was having a hard time getting up on Sunday morning also, it's so hard when one of us is sleep deprived, but when both of us are it's really, really hard. After Gordy gave Luke a bath and I got him dressed, all his machines and equipment moved out to the living room for the day, Gordy got paged from work with some problem that he had to take care of immediately. Needless to say the kids had to walk to church by themselves, which is only 4 houses down from our front door. I hate to send them by themselves, but I know that with as much family as we have there at church they will be will taken care of and watched over, but that doesn't help the fact that I wanted to be there with them.

I wrote the previous paragraphs to set the stage for the pity party I was having for myself during that morning. Tears were flowing freely and I just couldn't stop them, or my horrible thoughts of how hard my life is at times. Then I begin to beat myself up, because I realize that as hard as we have it there are many people out there in the world that are much worse off then our family. I tried to pray, but it was so hard, the tears just keep coming. As the morning progressed, Gordy was finally able to get to church once he finished up taking care of the problem at work and that brought me a bit of relief knowing he would be at church with the kids.

After church they were having a baptism service at a local lake and then a potluck BBQ at the church. I was in tears knowing that I was once again missing out of something that I really wanted to be at. Okay, I'm sure by know you are saying to yourself enough already Sue, we get it you were having a terrible day.

I knew that I needed to go to church that night. I have missed so much church lately and that is so hard on me, you see I grew up going to church Sunday morning, Sunday night, Wednesday night and any other time there was a service during the week. I love to go to church, I love sitting there worshipping during the song service, I love feeling God's amazing presence, I love hearing the Word being preached, I love hugging the people and connecting with those at church, I love feeling apart of the family of God!

Every so often I go back to a church that has always held a dear spot in my heart, the church that I went to when I was in Jr./High school, the church were I met and married Gordy, Life Center. It is one of the few churches that actually have an amazing Sunday night service. I went to be fed spiritually that night, but God had other plans, plans that I would of never dreamed of in a million years. You see Pastor Dean was having people share a story about their life and he just happened to ask for a volunteer from the audience, someone that had been attending that church for less than 3 years, don't ask me why but I raised my hand and was chosen to go up front. I sat on the platform amazed that even though I had just lived through one of my most challenging days, God in His amazing ways, said Sue when you are at your weakest, I will make you strong.

I sat on that platform sharing my story of Luke's journey, of how Luke is a miracle who was raised from the dead, of how even though I would of never in a million years have chosen to go through this journey that I've been on, I wouldn't go back and change it because now I have a stronger relationship with my Jesus, I know from experience that He will never leave me, that He always hears my cries when I am in the deepest pit and pulls me out, that He is the only reason that I have the strength to go on most day.

I know that God chose me Sunday night to prove to me that I have not lived these past 7 years in vain, that He has a plan for my life, even when I can't begin to imagine what that possibly can be. You see when the service was over I had so many people come up and give me a hug and tell me they would pray for Luke to get better and for me to have the strength to go on, some of them had tears in their eyes as they told me that my story was just what they needed to hear that night.

I wonder if you had the opportunity to get up in front of a large crowd of people, what your story would be?? We all have a story to share, it may not be like mine, but it's just as important and others need to hear it. You see even when we think that no body cares about us, we always need to remember that God cares and that should be enough, though it doesn't always feel like it. I have been blessed over the years to have some of the people that follow the blog comment or send me an e-mail to tell me their story, to tell me that because of the words that I write on this blog they are inspired and to be honest, that is very humbling to me, but I have and always will give all the glory to God, as I've said it so many times before it's only because of His strength that I'm even able to get out of bed some days, He is the only thing in my life that is constant, He never changes, He is always there, hearing my cries of desperation, ready to minister to my soul. And the really cool thing is He is such a HUGE Father God, He is able to do that for you too, all you have to do is ask.

I hope and pray that today if you've never called out to God and asked for his help that today you will do just that, but more importantly if you've never asked Jesus to forgive you of your sins and come into your heart, I pray that you would do that today. You see this journey as hard as it's been would be worth it all if just one person found Jesus through the humble words that I write on this blog. I would be ever so grateful if you would be willing to share a story of what God has done in your life. It would make my day to hear from you, it only takes a minute to write a comment and just think of all those people that will be encouraged today by your words.

Love in Christ,
Luke's Mommy Sue

PS Luke still needs your prayers, he is still struggling to get over this pneumonia, please join with me in prayer that God will reach down with His Healing Hands and completely heal Luke's lungs today, forever. Thank you.

Did I tell y'all that Lindsay and her son Jett came to visit when we were camping in San Diego? She spent 4 nights with me while Gordy was in Mexico, we had a great time!

Luke's Roller Coaster ride has been trending way down this week, please pray that this trend will turn around

2011-08-06T11:51:00.000-07:00

Oh my goodness, it's been a crazy ride on Luke's roller coaster this week, going down way more than going up:
It went way down: Saturday night as I was up all night suctioning Luke, responding every few minutes to his alarms going off.

It continued to go down: Sunday when we dealt with Luke throwing up all day long, Gordy went to the store to buy Pedialyte and finally Luke kept that down, Praise God.

It started to go up a bit: Monday Luke seemed to be doing a little better, his numbers were better and he was keeping his food down.
Though then it went back down when Isaiah stepped on a nail and Gordy had to take him in to get a tetnus shot.
It went back up a bit that night when Amy and I had a mom and daughter date, we went out to eat and to a movie, fun times.

It started out down again: Tuesday when I had to take Isaiah into the Dr. because his foot was so painful he couldn't walk without crying out in pain,
then it went back up again when we found out that there was no infection in Isaiah's foot, just going to be painful a few days because the nail went so deep.
It continued to go up that day as I went on a beautiful hike at Mt. Rainier with Natalie, Josh and my niece Janell.
It plummeted way down as I fell down during the hike, hurting myself, but I so thankful to be alive with no broken bones.

It was pretty even on: Wednesday, Luke woke up doing pretty good, I had to run some errands,
then it went back down when I found out that I had torn a muscle in my shoulder and realized just how much pain I was in from my fall the previous day.

It went back down: Thursday morning when I was woke up to alarms going off, Luke's nose was running none stop and coughing out thick yellow gunk,
then it went back up as I realized that I woke up without a lot of the pain that I had gone to bed with the night before,
It then went into high speed as I spent four hours in the kitchen making Luke's food, so thankful for my sister Jill who washed all the dishes that day, for Amy who kept both of our Vita Mixes going, for Janell who helped juice the carrots along with so many other tasks, for Jamison who helped strain food, for Natalie who helped strain food and keep things going and for Isaiah who helped peel and cut up all the fruits and veges we put into the food.
It went way down as we put Luke into bed realizing that he a high fever, his heart rate was soaring and his oxygen levels way too low, we had another very long night.

It continued to go down on: Friday as I realized that Luke was not doing better, so I got him into see the Dr. and
continued to go down even farther as I heard my back pop as I was helping to hold him during his x-ray, it was only God's supernatural strength that I was able to get him back into his chair and into his car seat to go home, the Dr. diagnosed Luke with pneumonia and gave him a antibiotic and asked me if I wanted to admit him into the hospital, I of course said, no that I felt comfortable to keep him at home.
It continued to stay down most of the day as Luke's need for oxygen continued to stay high, along with his high heart rate.
It went back up a bit at bed time Luke seemed to be doing better.

It went back down: Saturday morning when his numbers were once again back to where they were yesterday morning, but we are hoping and praying that today he will make a turn for the better so that we can end this week with
it going back up.

So there you go as you can see from the trend Luke's roller coaster ride has not been very fun to be on this week, in fact I would say that it's been really nightmarish at times. Please pray for Luke to get better and that we could trend up once again on this journey that we have traveled on for sooooo long.

Love in Christ,
Luke's Mommy Sue

Thankful to be alive today and for God's protection this past week during a hike to Comet Falls at Mt. Rainier

2011-08-05T00:11:00.000-07:00

Mt. Rainier - Comet Falls

I'm so thankful to be alive today, I had the most terrifying experience earlier this week and I'm just now able to talk about it without crying. Last Tuesday Natalie, Josh, my niece Janell and I went on a hike up at Mt. Rainier to Comet Falls. It's a beautiful hike that takes you 2 miles up the mountain to view one of the most spectacular falls in Mt. Rainier National Park, this was my 3rd time to go on this hike, so I thought I knew what it was going to be like. It was a gorgeous day, very warm, the skies were deep blue and you could see for miles as you walked up the side of the mountain. As we were going up the trail the first little scare we had was when we noticed that there had been a sink whole in the trail, it was freaky to think that if you hadn't been paying attention you could fall right down it to the bottom of a very steep cliff. Our next little scare was when we came up on a rock slide, we had to climb around the rocks, it was a bit unnerving as we had to check each rock to be sure we had a sturdy one to grab onto or we would fall right down another cliff on the mountain. But neither of these area's was anything compared to what awaited us on the top of the trail.

The sink hole in the middle of the trail

As we turned the corner to the end of the trail it dawned on me that I hadn't prayed for God's protection that day, which is something I normally do anytime we take a trip anywhere or do something that is a bit challenging. So I stopped and prayed that God would surround each one of us with His protecting Hands and keep us safe, I really truly believe that is why I'm here typing this out tonight instead in a hospital bed or worse yet in a grave. You see as we came to the very end of the trail and the gorgeous falls stood before us there was a huge patch of snow and ice, but Janell, Josh and Natalie would not be stopped by this they continued on skirting around the bottom of it. I in fact told Natalie that I would wait there for them to return, but as I stood there looking at the beautiful falls I decided that I too would follow in their foot steps and skirt around the end of the snow. I made it over to the falls just fine and sat on a huge boulder enjoying the sunshine, the sound of the falls and river as it went by all the while thinking to myself that I would be so thankful once we got back to the other side of the snow patch and around the rock slide.

All of us at the end of the trail, happy we made it to the falls

As we started to go back down the mountain, I slipped and began to fall down the side of the mountain, the only thing that saved me from completly slidding down the mountain was I had the impluse to reach up and grab some small branches of some trees that were right in front of me. I layed there for a moment catching my breath, as Josh who was in front of me and Janell behind me, along with Natalie all began to ask me if I was okay. It took a minute for me to stand up and as I did I realized that nothing was broken, that I was very sore, but thankfully because of God's protection I was okay, I was covered in mud, shook up and sore but Praise God okay. I just remember saying over and over again, thank you Jesus for your protection, thank you Jesus that I'm alive, thank you Jesus that I didn't break any bones, thank you Jesus that I could still walk. . .

The spot where I fell, it's hard to see how sloped it was here. Those little tree's there are what saved me from plummeting down the mountain into the falls.

So here I sit tonight with some huge bruises, a nasty looking gash in my thigh, a torn muscle in my shoulder from grabbing the tree limb, a sore knee, but that's it, in fact I woke up feeling so much better yesterday morning, well enough to be on my feet for about 4 hours in the kitchen making Luke's food formula and was even able to take a short walk.

I've come to the realization once again that each day we wake up able to walk, talk and move without assistance we are blessed. I've also been reminded by God's faithfulness in His protection that He hears our prayers and answers them, knowing that I can trust him to protect me when I ask for his assistance, thank you Jesus!

Natalie and I at the bottom of the falls, this is the part that you can see from your car as you drive up the mountain.

In closing I just wanted to take a minute to ask you to pray for Luke, he was really sick on Sunday, throwing up most of the day, then he seemed to get better, but then yesterday he woke up with his nose running like crazy, coughing and sneezing all through out the day. When I layed him down at night I decided to take his temp, as his heart rate was high, it was close to 102. PLEASE pray that he just has a cold and that he will be better by today, thank you.

Love in Christ,
Luke's Thankful Mommy Sue

Once again I have to say a BIG thank you for your prayers, they are so powerful!!

2011-07-26T23:20:00.000-07:00

Here is our family in front of the new church they are bulding in LaGloria, Mexico. Gordy, Amy and Isaiah went on a missions trip at the end of June, Ezekiel, Luke, Lily and I joined them on Sunday morning for church. It was so wonderful to be back there worshipping with our wonderful Mexican friends who are just like family.

I'm so grateful for your faithful prayers, I often tell people the only thing and I mean the only thing that get's me through this journey that I'm on is all the prayers of those that are so faithful to lift up Luke and our family to God on a daily basis.

I woke up this morning after only about 3 hours of sleep, for Luke had a very terrible night again last night, wondering if I had the strength and stamina to take Luke to his appointment today. But after realizing that if I put it off I would have to wait an even longer time to hear what the Pulmonologist had to say about how he felt Luke is doing.

Here is Luke bundled up sitting by the fire on the last part of our trip on the cold Oregon coast.

I'm here to say that I'm happy that I decided to take him in, we actually got a good report, yes oh me of little faith wondered what he would say, dreading this day for a few months. After the Dr. listened to Luke's lungs he actually said that they sounded good, no crackles, no wheezing and only a little bit of coarseness in his upper air way, he also said that Luke looks good and that we don't need to go back for another 6 months if his lungs continue to stay healthy. WOOHOO, not one word was mentioned about a trache, that is what I was dreading. He also went over his chest CT and said that Luke has a very mild case of bronchialectis, this was music to my ears, I had orginally heard the Dr. say that Luke was doing terrible and that perhaps one day he might have to take out part of his lower lung, that he would never do that without a trache in place. Thank goodness Luke is no where near that possibility right now.

I also talked to the Dr. about the possibility of Luke suffering from allergies and how his Pediatrician had put him on a decongestant a few months ago and that was helping him out with his congestion. I will be honest to say the last week nights have been a nightmare, seems that Luke must be allergic to something in his room, because he get's so stuffed up at night that we end up having to suction him most of the night long and he is not like that during the day. Once again I'm asking you to pray for Luke at night, that God will help us to know what he is allergic to in his room, that we will know exactly how much decongestant to give to him, that he will begin to breath better at night, that he would stop alarming and that I will be able to get some sleep, I'm exhausted! Thank you.

Here is Mary with 3 of her children, Jeff, Rachel and Michelle

Here's a update on my friend Mary. I went up to Seattle to see her tonight, she is doing ok, they have her pain levels pretty much under control. She goes back into surgery tomorrow, they will be seeing how much skin they will be able to work with on her lower leg. PLEASE be praying that her leg and foot will be saved, that she will stay pneumonia free, as she has two broken ribs and it is painful for her to cough, that she will get her appetite back to keep her strong, that she will stay infection free, that she will not have to worry about her children, that she will not have to worry about her financial situation at home since she is a single mom and the sole provider for her family and for a miraculous touch from Jesus.

Would you also pray for Jerry, he had a kidney transplant last November, during the surgery he suffered an anoxic brain injury. The Dr.'s said he would be a vegetable for the rest of his life, but God the Mighty Healer is slowly healing Jerry, he is now talking, eating, had his trache removed many months ago, basically doing great until this past week when he ended up back in the hospital for surgery. He's been struggling with an infection on his stomach in the wound from his surgery many months ago and his finger has had a very bad infection. They will be doing surgery to open up the wound on his stomach to get out all the infection along with, the wound on his finger, in fact his finger is so bad they aren't sure if he will keep it. Please pray for the infection to go away and heal up. Also keep his wife Brenda in your prayers, she is trying to juggle so many things in her life lately, not only the constant care of her husband, but her 5 children also need her attention, along with her job as she is the sole provider for her family of 7.

Thank you once again my faithful friends, your prayers are so powerful and appreciated.

Love in Christ,
Luke's Mommy Sue

I love this picture of Luke and Lily in the van on the ride home from Seattle last week, Lily was holding his hand and Luke was loving every second of her attention.

PS I am really wanting to go to Atlanta, GA in September to the MOBILE conference, MOBILE stands for Moms Of Brain Injured (children) Loving Evermore. I was able to go a couple of years ago and it was spurred me on to plan a retreat for mom's with children that have had near drowning accidents. Anyway I was thinking about ways to try to earn money for a plane ticket to get there and I thought that perhaps one of our faithful blog followers may have some airline miles that they are not going to use and they would like to donate them to me so that I could go to the conference??? If I am able to go I will speaking at the conference about Keeping on, Keeping strong a short inspirational talk on why it is so important for our sake and for our children's sake not to lose our hope during what can at times seem like a very hopeless situation. I feel uncomfortable about asking for help, but I'm trying to take the advice that I give to so many of my friends which is, how will we know how to help you or pray for you if you don't let us know your needs? So there you go, if you want to help please let me know, if you are unable to help that is fine to, I know that if God wants me to go He will provide a way for me to go.

We would really appreciate your prayers today

2011-07-26T01:50:00.000-07:00

Luke goes in at 1 pm today to see his Pulmonologist for a follow up appointment after being diagnosed with Bronchialactis. Please be in prayers that Luke's lungs will sound better and that we will get a good report. I do believe that the vest treatments we've been giving to him twice a day has helped him, though he has been quite junky at night since we returned from our vacation. Isaiah, Luke and my allergies all got really bad when we came home from our trip, I'm thinking that we are all allergic to something either in our home or it's the pollen outside, since we are having such a crazy wet, cold summer.

Would you also pray for a very good friend of mine, Mary Healy. She was in a horrible accident on Sunday night, when a man who was distracted by a cell phone call rammed his truck into her van smashing her against a gas pump. The accident almost completely severed her leg, thank goodness their was a army medic there who helped her out quickly, saving her life and we are hoping that her leg and foot will be saved too. She had her first of many surgeries this morning and she is a lot of pain. Mary has been our church secretary for many years, she is a single mom who has four children, Johnathan, Michelle, Jeff and Rachel, they all need your prayer for comfort during this very trying time.

Love in Christ,
Luke's Mommy Sue

A quick note to let you all know we are home from our vacation and Luke is doing okay.

2011-07-19T01:58:00.000-07:00

We got home from our vacation last Thursday night. Since then life has been a whirlwind of activity, two weddings, laundry, unpacking, laundry, church, laundry, a trip up to Seattle, laundry . . . I promise to sit down and post lots of pictures and details about our trip very soon. Just to let you know Luke is doing pretty good, we had some really rough days on our trip, but we also had some really great days, not sure what we had more of though to be honest with you.

Please keep Luke and the kids in your prayers as Gordy and I get away to celebrate our 28th wedding anniversary. While I know many of you may be saying, they are going again??? Yep, it's true while I realize we were just gone for many weeks, and to be perfectly honest we did enjoy our family time together and would not trade it for anything in this world. Our trip was a lot of work, at times lots of stress and not alot of sleep or relaxation. Both Gordy and I are in need of some rest, relaxation and some fun thrown in there, we are taking our bikes with us so that we also can get in some time to bike together, something we enjoy doing, but couldn't do on our trip since one of us always had to be right by Luke's side, though we were able to go on bike rides with the other kids and sure did enjoy that:-)

Luke is having a rough night tonight, this seems to happen often we when think about getting away. I know I already asked you for prayers, but would like to ask you once again to PLEASE keep Luke in your prayers, that he will be healthy and that he would have good nights so that Amy will be able to get some sleep while we are gone.

Love in Christ,
Luke's Mommy Sue

Our very challenging and difficult day at Disneyland with Luke: -(

2011-06-20T16:09:00.000-07:00

All the planning in the world can not change the fact that Luke can not tolerate the heat and he does not like being in his stroller/wheelchair for hours. After staying up way to late getting as many details together as I could for our day at Disneyland and then getting up by 6 am to get ready to go, we still had to come back to the trailer, Luke just could not handle the heat. Gordy stayed at Disneyland with the kids, while I decided to bring Luke back for his vest treatment, to give him a break and to feed him. To say this has been a challenging day is putting it mildly.

The memories of when we where here with Luke last time keep coming to my mind. Our family had gone to Disneyland a few weeks before Luke's accident and I keep thinking about the last time he was there, running, playing, laughing, having the time of his life. Days like today make me realize how much our lives have truly changed, nothing and I mean nothing is easy anymore. I know that I need to get over it and just try to enjoy the day we have, but the tears keep coming. I was so stupid to think that we could take Luke to Disneyland in June, when it's hot, for that matter any day at all, it's just not something that he will ever enjoy again, until God heals him.

I try so hard to keep a good attitude, but today has not been easy. I keep asking myself when am I finally going to realize that life can't go on as if I had a "normal" child. I know that I need to suck it up and get over this, because I don't want to ruin the day for the rest of my children. I'm so sorry for this post, because I realize that I'm whining, but please remember that this is my journal of our journey and I hope and pray one day I will look back on this day and remember some of the good of the day instead of focusing on all the challenges.

I'm going to try to take Luke back at 5:30 for the parade and then Gordy will bring him back after that. Please pray that things will get better today and for the rest of this trip to be better, because while we've definitely had a few good days, to be honest most of our days have been full of lots of very challenging difficulties.

Love in Christ,
Luke's Mommy Sue

PS Being the positive person that I try to be, I hope and pray I can update you later with better news, sorry this was such a downer post, just keeping it real.

Hot, hot, hot it sure is hot here!

2011-06-15T19:51:00.000-07:00

Man is it hot here! It's been in the high 90's, boy are we thankful for air conditioning in our trailer and van. The kids and I went to Shasta Caverns yesterday, it was nice and cool on the tour and so amazing. We had to climb 800 steps on the tour, therefore Gordy stayed back at the trailer with Luke. I hate the fact that Luke is unable to do all that we can, it just about breaks my heart to have to leave him behind.

We left Redding around noon today after our visit to Les Schwab Tire store to fix our trailer tire. Stopped near Sacramento to pick up some formula for Luke from a sweet family who had some extra formula they didn't need anymore. Even though it took a few hours of our day it was well worth it since it saved us hundreds of dollars. Thank you Julia and James.

We are on our way to Hensley Lake, which is about an hour from Yosemite. We plan to go spend the day at Yosemite tomorrow, which will be good since it will be about 75 degrees, 20 degrees cooler then where we are staying. We are so excited to see Yosemite park, we've heard it's beautiful there.

I hope to be able upload some pictures as soon as I can figure how. If you want to see some pictures or hear some more up to date news just ask to be my friend on face book, be sure to mention your a blog follower so I will accept you as a friend.

Luke is doing pretty good, though he had a rough night last night. We are hoping and praying he does better tonight.

Love in Christ,

Luke's Mommy Sue

We're finally off, California here we come:-)

2011-06-11T20:01:00.000-07:00

Just wanted to let y'all know we took off today on our vacation after Natalie & I walked the 12k Sound to the Narrows. I'm excited to say Natalie & I made great time, kept our pace around 13 minutes a mile. We finished in 1:44.25, I shaved off 35 minutes from the last time I did it many years ago.

We are going to Yreka, CA which is right over the Oregon, California border. We are staying in a Hotel tonight which is a good thing since we got such a late start, we won't be there until about midnight.

Luke is having a good day, we are hoping and praying he stays this way our entire trip.

Love in Christ,

Luke's Mommy Sue

PS A big shout out thank you to Lance for staying at our home, which he could be with us though:-)

What a Crazy Roller Coaster Week Full of Some Huge Blessings and Challenges

2011-06-09T23:36:00.000-07:00

This week has been very challenging to say the least. Since last Friday we've had our share of some huge challenges and lots amazing blessings also, here is our week in review:

Friday June 3rd
Blessing: It was exciting to hear Luke's rehab Dr. talk about how good Luke is looking and was sounding during his first Dr. appointment that day.
Challenge: It was discourging to hear Luke's Pediatrician talk about Luke's CO2 numbers being high once again and that Luke had lost a pound.
Blessing: Yoli and Juan volunteering to take Luke and Lily over night so that I could get a full night sleep.
Challenge: A call around 11 saying that Luke was doing horrible, his heart rate high, not breathing very good and on lots of extra oxygen. I had to go over there with some sudafed as I felt it could be allergy related.
The blessing: After some sudafed and some prayers Luke was doing well enough for Yoli to say yes keep him here and you go home and sleep. I did in fact get a full 9 hours of sleep that night, what a HUGE blessing.
Saturday June 4th
Blessing: Got some stuff done out in our trailer, preparing it for our vacation.
Challenge: While I was at the laundromat washing all our sleeping bags the tire of on our big blue van went flat, Gordy came to change it while I spent my time going back and forth between watching Luke and Lily in the van and making sure our sleeping bags finished drying.
Sunday June 5th
Challenge: Woke up to Luke being very stressed out after having a very rough night, needless to say I didn't get much sleep.
Blessing: After holding Luke for awhile he finally settled down and went to sleep. We both stayed home from church and even though we missed being there I realized that we needed that time to rest after our horrible night.
Challenge: Gordy spent part of the afternoon trying to find a decent price for two tires for our van, he finally found that Costco had the best price, but even then it was going to cost us about $435. He had to go to Costco to order and pay for them so that they would have them there for us this week.
Blessing: I was able to sit down and listen to Lily read some books to Luke and I and then spent some time reading out loud to the kids before they went to bed.
Monday June 6th
Blessing: Natalie and I went for a 7 1/2 mile walk timing ourselves to know how we are going to do this Saturday for the 12k Sound of Narrows walk we are doing. After our walk I was blessed by my friend Jeri who took me out for a belated Birthday lunch.
Challenge: After spending time on the phone with 3 different people we found out that even though we asked our medical supply company 3 weeks ago about getting a portable oxyginator for Luke, we are now to late to have one come in before we leave. They said to call a different company who quoted us the rental price of $100 a week for one, we said no that's just too much money for us so we are sticking to our oxygen tanks and praying that Luke will do great on our trip.
Tuesday June 7th
Challenge: I had to get up early to take our little blue van into the mechanic to get it fixed, because even though he said that the problem we were having would be a simple fix, both Josh and Gordy were unable to fix it. Our cost for that fix was close to $250.
Blessing: Natalie, Amy and Lance started preparing Luke's food formula while I ran down to Olympia to pick up some fresh milk for the formula.
Challenge: When I got home our trailer awning had broke off the trailer and was blown on top of it. I lost it and went crying into our home knowing that we had already spent major money this week on repairs.
Blessing: Josh and Natalie decided to go to the RV store, get the parts to fix it and fix it for us all before Gordy got home from work that day. It cost less than $20 since they did the labor for us.
Wednesday June 8th
Challenge: When I went down to the garage to get some eggs out of our extra fridge I noticed a little river of water going through our garage, upon investigation I found out that our freezer had been left open over night. Needless to say I spent close to an hour cleaning up that mess.
Blessing: I was able to spend the entire day at home without having to go anywhere so that I could get Lily, Isaiah, Ezekiel and myself packed for our trip.
Thursday June 9th
Blessing: Gordy and I woke up to realize that Luke had one of the best nights he's had in a long time.
Challenge: As Gordy was working on the trailer making sure everything was in good working order he realized that our air conditioner wasn't working.
Blessing: After taking time to have a family meeting where we spent some time praying and reading the Bible, Gordy went back out there and realized that he had just blown a fuse in our home, he fixed that and the air conditioner was in working order again.

I quite often think of myself as a pretty positive person, but this week has been a challenge at times to keep up a good attitude. I'm so glad that God has made the provision for us to go on this vacation, but I would be lying if I said getting everything together for this trip has been easy. Tomorrow I have to get Luke packed, the rest of the food together, finishing packing up the trailer, get a few errands ran and the list goes on. Let's just say that when we are finally on the road I'm sure our whole family will be breathing a huge sigh of relief.

Love in Christ,
Luke's Mommy Sue

The Good, The Bad and The Ugly News from Luke's last Doctor Appointments

2011-06-05T10:59:00.000-07:00

Here are some pictures of the beautiful mural
wall at the Mary Bridge Out Patient Clinic

As mentioned in the previous blog Luke had two Dr. appointments on Friday. The first one was with his rehab Dr. we were discussing Luke's muscle relaxant, baclafen. We had tried to increase the dose but found that when we did Luke began to have more of his startle seizures, in fact they got so bad that he would do them without even being touched. The Dr. agreed that this wasn't good, therefore we are keeping him at the dose he's been for the past year. The Dr. did say that Luke was looking good and even thought that he looked like he had gained some weight, of which I had to tell him that this is not so, he actually lost a pound, but nevertheless it was good to hear a Dr. saying that Luke looks good. Losing a pound doesn't sound like a big deal unless you are way underweight and then it's a huge deal. We also discussed putting Luke into some casts to help get his ankles so that his feet are bending up towards his legs, he thought that might help his knees too, so we will be making that appointment after our trip.

After going to that appointment we headed over to the lab to do his bi-yearly full comprehensive metabolic bloodwork. Getting blood out of Luke is like trying to extract liquid from potato, I'm sure potatoes have some kind of liquid in them but getting it out through a microscopic tube would be just about impossible. I could tell the technician was having a huge challenge, but in the end she got just enough for the test.

We then took a bit of a walk around a beautiful park by the hospital, what a blessing to be able to take Luke on walks again now that the weather is getting nicer.

Our next appointment was with his pediatrician, we needed to see him about getting some prescriptions for a portable oxygen concentrator and oxygen while we are on our trip, we also wanted to discuss his bloodwork results. I was so disappointed to find out that Luke's Co2 numbers are still too high, in fact they are the highest they ever been on this test. PLEASE, PLEASE pray that Luke will start to take deeper breaths so that he can blow out that damaging Carbon dioxide from his body.

Luke and Lily stayed the night at Yoli and Juan's that night, they are so sweet to give us a break every once in awhile. They had a bit of a challenge when Luke was not doing so well, he was breathing really hard, needing to be suctioned constantly and his heart rate was soaring. I had forgotten to send Luke's Sudafed with him, so I took it over to him and after giving him the med and some prayers he settled down. I offered to take him home of course, but they said no they would keep him. What a HUGE blessing it was to get a full 9 hours of uninterrupted sleep.

We have less than a week before we leave on our vacation, while I'm so excited about going, I'm also very aware that I'm going to be going non stop to get everything pulled together this week, oh well it is what it is: -)

Love in Christ,

Luke's Mommy Sue

To Go or Not To Go, that's the question?? Being confident that God has our answer:-)

2011-06-02T11:52:00.000-07:00

Gordy and I have been trying to decide whether we should take our vacation this year. You see Gordy celebrated his 20 year anniversary of working at REI last year and was awarded a 5 week sabbatical to take during that year, but since Luke was having so many challenges last year REI let us delay it to this year. We originally hoped and planned to take a trip across America, fulfilling our lifelong dream of going to Washington DC. But after Luke's last stay in the Hospital we realized that he is too "fragile" to go across the USA, so after much prayer and discussion we gave that dream up once again.

We have decided to go California instead, it will be warm there and only a 24 hour drive home if we need to get back quickly for an emergency medical need for Luke. We did something similar to this trip 5 years ago when Gordy had his last sabbatical. Our church is taking a missions team down to minister in Mexico at the end of June and we thought that Gordy, Isaiah and Amy could join up with the team in San Diego to go with them. I would stay in San Diego at a KOA campground with Luke, Lily and Ezekiel, Nicole Jacobs a very good friend of Amy's will stay there with me to help out with the kids. Amy will come home with the team after Mexico to prepare for her 3 weeks at our church camp, we will miss her but know that she needs to fulfill her commitments to the camp.

So God willing this is the plan: We leave on June 11th right after I walk the 12K Sound of Narrows in Tacoma, hoping to get out of town around noon. We stay that night in Yreka, CA, which will be about a 7 hour drive. The next day we get up early to go to church at Bethel in Redding, we will stay in Redding 3 nights, so that we can do some exploring around that area. We leave there on Wednesday to head down to a campground which is about an hour from Yosemite National Park, we will spend 4 nights there, then on Sunday we go to Anaheim. We plan to go to Disneyland all day Monday, we hope and pray it won't be too warm of a day so that Luke can join us at Disneyland. On Tuesday we go to San Diego, we stay there 9 nights while the missions team goes into Mexico. Once we leave San Diego we will take a day to get up to Eureka, CA which is on the coast, we spend the 4th of July there, doing lots of exploring at the Red Wood National Forest. We will then end our trip at one of our favorite campgrounds Whaler's Rest in Newport, OR.

We plan to get home on Thursday July 13th in time for two weddings that weekend. Then Gordy and I will take off a few nights the next week to celebrate our 28th wedding anniversary, I'm sure we will both need a couple of days of rest after our vacation:-)

I'm sure some of you out there are sitting there thinking: Are you crazy?, wow, how lucky wish we could go, have you really thought about all the medical supplies and equipment you are going to need?, it's dangerous to go into Mexico right now, what if Luke get's really sick?, do you think Luke will tolerate that long of a drive in the van?, can you really afford to take a trip like that? Or perhaps these are just the questions that are going around in our heads. We will need to take lots of extra oxygen and I'm looking into getting a portable concentrator to take, we will have to be sure to take extra of all medical supplies, we have prayed about the team going into Mexico and feel a peace from God that He will protect our team, we have planned to take this trip for years now, saving money for it so we feel that we are able to afford it.

And yet we still have reservations about going, especially after the last few nights we've had with Luke, he's needing more oxygen lately at night and even some during the day time. We were hoping that we could get our faithful prayer warriors to join with us praying that God will give us a true peace about going, that God will keep Luke healthy the whole time we are gone, that God will keep the team safe in Mexico and me to be fine with the kids in San Diego while they are gone, that Luke will do fine on the long drive down there, that it won't be too hot the day we go to Disneyland so that Luke will be able to tolerate being outside the entire day, that this could be a fun time for our family, a time of no stress, with lots of laughter and joy. Would you be willing to pray faithfully for our family while we are gone??

I take Luke into two Dr. appointments today, first to his rehab Dr. to discuss his muscle relaxing medications and then to his Pediatrician to talk about getting prescriptions for exchanging his oxygen tanks while we are gone and for getting a portable oxygen concentrator. Luke will also have some blood work done, please be praying for good results.

Love in Christ,
Luke's Mommy Sue

Luke was finally approved to get the "Vest Machine" and it has been making a huge difference in his life, PRAISE GOD!

2011-05-25T00:56:00.000-07:00

Sorry it's taken me so long to update Luke's blog, some days, no I mean weeks, no I guess I really mean months are so very busy. Even now I really should be in bed, but I knew that I couldn't go another day without sharing at least a few words with y'all. I actually sat down a few weeks ago and posted a blog post and then for some reason the computer lost it, can you say frustrating??? It was actually the night before Daniel, Sarah, Natalie and I walked a 5 K to raise funds and awareness for stopping human trafficking. The picture below is right after we finished the walk. It was the day before Mother's Day so after the walk Daniel and Sarah took Natalie and I out to there favorite little Thai restuarant in Seattle, they treated me to a wonderful lunch. We then ended the day playing a game of Settlers of Catan, it was a great day: -)I've been wanting a picture of all the kids lying in a circle for a long time and on Mother's day I talked the kids into laying on the ground for me to take one. I'm such a blessed Mama!
After sharing a wonderful lunch with my parent's, the Rodriguez family, a good family friend Mary and her daughter Rachel, plus a few others, we went on a walk to the Chamber's Creek Park. Even though it was a cloudy day, we all enjoyed ourselves at the park. The kids had blast looking for crabs under the rocks, some of them even got brave enough to pick some of them up.

Luke has been doing so good, Praise God. Our insurance company finally okayed him getting the vest machine. He was quite "junky" the first few days after getting it, but he is now doing so much better during the day and his nights have been amazingly better. We have been okayed for the vest for a month at which time they will re-evaluate Luke's progress to decide whether they will let us keep it. I have to believe that when they hear about how great Luke is doing they will decide to let us keep it here. Even though our insurance company will be paying their part it will still cost us about $150 a month, they are renting it to own it eventually. Luke loves the machine everytime we put it on him he get's such a nice smile, he even makes noises with it sometimes.

I did say I've been busy right?? One of the many things that I did was finally get Luke and the other kids into the dentist. I'm so thankful to say that Luke's teeth look great along with no cavaties for the kids. I can add Dental Hygenist assistant to my list of many different jobs that do on a daily basis, I was there to help keep Luke's mouth open and suction as needed. It was a bit stressful to be honest, but not as stressful as it was for Luke.Oh well, so much for keeping this post short, I guess it's just not possible for me to do that and even though I have so much more to share with you, I'm going to log off and go to bed. Once again I have a very full day tomorrow.

Love in Christ,
Luke's Mommy Sue

Here's a video of Luke hooked up to the Vest Vibration Machine. It's hard to believe a little machine like this can cost $16,000, yes I really did mean to say sixteen thousand dollars. It's going to take us a few years to get it paid off that is of course if our insurance company decides to let us keep it, please pray they let us keep it.

The Good News vs. The Not So Good News

2011-05-04T16:29:00.000-07:00

The Good News: I took Luke into his Pediatrician today and found out that his lungs actually sound good. Wow, I wasn't expecting to hear that, oh me of little faith.
The Not So Good News: Looks like Luke has his first official ear infection, along with some allergies going on right now. Which we think are the reason for all the congestion he is having, therefore making his O2 numbers low, along with the constant suctioning we've been doing for the past week.

The Good News: The lab techinician was able to get a good vein on her first try, she took 3 vials of precious blood.
The Not So Good News: I'm anxiously waiting to hear the results, wondering how his CO2 numbers will be along with his other numbers, hoping to be surprised.

The Good News: The Dr. took a look at Isaiah's arms today and prescribed a new kind of antibiotic cream, along with saying that it's good we have an appointment with specialist in a few weeks. What a blessing to have our great Dr. take a few minutes to look at Isaiah's arms, even though it wasn't his appointment.
The Not So Good News: Isaiah's arms still look horrible, he just can't seem to leave them alone, therefore they are not healing, please pray for them heal once and for all.

The Good News: I was able to get two nights of uniterrupted sleep last weekend when I went to visit my sister Lori and her husband Lonnie. I went over on my birthday, last Saturday and came home on Monday evening. It was so good to see them and enjoy the sunshine.
The Not So Good News: It was the only full two nights of sleep I've had all week long, last night being another nightmare night. I ended up sleeping on Luke and Lily bedroom floor as I just didn't have the energy to get up to go to my bed since I was having to suction him about every 15 minutes to keep his heartrate down and his o2 numbers up.

The Good News: I had a wonderful birthday! Our family went out to dinner at the Spaghetti Factory and then came back home for cake. I was blessed with some new shoes and some other great gifts.
The Not So Good News: After having such a great evening with family, I spent the rest of the night suctioning Luke, only got a few hours of sleep, thankfully my family let me sleep in.

The Good News: I lost another pound, down 26 pounds, half way to my goal.
The Not So Good News: Luke still weighs 47 pounds, he's been holding steady there for a long time. He's having a hard time gaining weight because he's been expending so much energy breathing lately.

The Good News: We applied and recieved financial aid from our local Hospital, which includes all of Luke's specialists and therapists. We will now actually get 55% off any amount that we have to pay out of pocket, which includes our co-pays, woohoo!
The Not So Good News: In order to have our bills reduced I have to call them everytime we get a new bill so that they will take off the amount, therefore I have spent many hours on the phone getting all Luke's medical bills taken care of, another draining task to fill my day.

The Good News: Amy and her very good friend Nicole took off to the Oregon coast to spend a few days on vacation, I hope and pray they have a great time and stay warm.
The Not So Good News: Amy will not be here to help the next few days, so if Luke has another bad night, which I'm praying he doesn't I won't have her here to help out in the mornings.

The Good News: I'm thankful that even though I'm absolutely exhausted beyond comprehension, God's never ending supply of strength is right there to help me get through this challenging time.
The Not So Good News: Sometimes because I am so exhausted I find myself in tears often, doubting whether God cares or even hears my pleas for help.

The Good News: I am so blessed to have such a wonderful family, great friends and all you out there in blogland that faithfully pray for Luke and our family, THANK YOU! We sure do apreciate your faithfulness.

Love in Christ,
Luke's Mommy Sue

Fear often brings you to forget those things that you know are true, I'm trying so hard to not let fear overtake me these days

2011-04-26T04:16:00.000-07:00

I hope you all had a very blessed Easter, we sure did: -) As you can see from our annual Easter kid picture Daniel and Sarah were not with us this year, they spent the day with Sarah's family. We missed them but understand that's part of married life, splitting time between two different families. Luke had a good day until the evening and then things turned rather quickly to being a horrible night. We're not sure if he was allergic to one of the animals that he came in contact with that day, first of all bunnies at church, then a dog and cat at my sister's home where we went for Easter dinner. He was so "junky", we had to constantly suction him. But we know it's not an infection we are dealing with as his secretions do not have any color to them and he is not running a fever.
It would be so easy to give into fear at this time in my life. In fact I've been dealing with a lot of fear since I had that phone call from Luke's pulmonologist on Friday afternoon. My eyes seem to be watering constantly, for someone that really doesn't like to cry it seems that's all I've been doing the last few days and nights. I know that fear does not come from God and I've been praying like crazy for God to take it away. I was blessed to go to a church meeting tonight and the evangelist that was speaking was speaking right to my heart, this was about the first thing he said, "fear often brings you to forget those things that you know are true." That is exactly what fear has been doing to me the last few days, it has made me forget that nothing is impossible with God, that is so easy to say but not easy to live out when you live with child like Luke. Another thing he said was that "delays are not denials," thank you God for reminding me once again that your timing is perfect.

I know that many of you out there think I'm crazy to continue to hope for a miracle healing for Luke, you think that I'm living in denial to except what has been dealt to our family. I've spent quite a bit of time in prayer the last few days and once again I have completely surrendered Luke into God's hands, I know that God loves him so much more than I could even begin to imagine, because He loves with a love that is so amazingly HUGE and wonderful, a love that would give His one and only son to die for our sins. His sacrifice was so awesome and wonderful, something only God could do, therefore I know that Luke is loved more than my mind can comprehend. I realize that I can trust God with Luke's life, even if that means he wants to take him home to heaven.
Once again I'm going to be bluntly honest with y'all, I have often wondered if Luke would be better off in Heaven. You see I know that heaven is so amazing and I've read a few great books about some people that have gone to heaven for a short period of time and had to come back down to earth once again. All of them without exception were not happy about coming back to earth, they loved it in heaven, the peace and joy they felt there was uncomprehensible to our human brains. I know that if Luke were to go to heaven tonight he would be whole once again, he would be able to run, shout and sing praises to Jesus, he would not be lonely because he has 3 siblings that I miscarried there that would join him, along with my sister Jenny who also drowned when she was 17 months old, along with Grandpa's and Grandma's that have gone on to glory. That said, the thought of him dying and going to heaven causes me so much sadness and grief I get really selfish and know I'm not ready for him to go yet.

Some of you may be saying Sue get a grip, it's not like he's on his death bed and you would be right, he's not but he is so fragile right now another pneumonia could easily put him there so quickly as his Dr. reminded me last Friday afternoon. Here's a little more honesty for you I also know that life without Luke would leave a gapping whole in my heart, but it would also take off a huge burden in my life. Does that sound selfish? Because it feels selfish saying that out loud. For those of you that don't deal with what we deal with on a yearly, monthly, weekly, daily, hourly, minute by minute, second by second, day after day can't even begin to imagine what it's like to have a child who can do nothing, absolutely nothing for himself. He is unable to move, talk, walk, go to the bathroom, take his own bath, feed himself, then you add on top of that the monitor that he is on each and every night that alarms off and on, on top of all the appointments, on top of the fact that we have to make his formula, which is a huge process, on top of the fact that we have major medical bills to deal with, on top of the fact that only a handful of people are able to watch him, on top of the fact that he almost weighs 50 pounds, which is so hard on our backs, you get the picture.
I just want to be perfectly clear when I say that I'm so thankful that we have Luke here today. He blesses me in ways that most can not understand, he is so cuddly, I love his precious smile, I love the way he yells when he needs something, he has brought me to a place in my walk with Christ that I can't even begin to explain. He has given me a new appreciation for things that most mom's take for granted, like dirty muddy clothes to wash, clothes that wear out from use, constant questions, dirty dishes to wash, floors to mop after spills, toys to pick up off the floor, being asked for specific toys at Christmas or on their birthdays, I think you get the picture.

Once again please understand Luke is not on his death bed tonight, though he is struggling tonight with his secretions, causing me to sit here and write this out in the middle of the night, or perhaps I should say early in the morning, as it is currently 4:15 am. I'm exhausted and as soon as I sign off I'm going to go to bed and let Gordy know it's his turn to listen to the alarms for the rest of the night. God is my strength, He is the only reason that I can go on day after day, He is the only reason that I'm able to find any kind of peace on this journey. I can't imagine how difficult my life would be without God right by my side, I'm so blessed to have such a wonderful Father, who carries me when I don't think I can go on another day. I feel like a broken record, but once again I'm asking for your prayers, prayers for Luke' s lungs to heal, prayers for Luke to start talking again, prayers for him to begin to walk again, prayers for strength to get through another day, prayer for the tears to stop flowing constantly, prayers for wisdom in knowing what to do about the trache issue, prayers for sleep and peace, prayers to have our hope renewed, prayers for . . . Thank you and may God richly bless you today.

Love in Christ,
Luke's Mommy Sue

PS I wanted to say thank you for your prayers for my Uncle David, he is recovering nicely from his open heart surgery. I took my parents up to see him on Saturday evening and it was so good see his smile and hear his laugh once again. Please continue to pray for him as he has a long journey ahead of him to recover from his massive surgery.

Bad news, Luke's lungs are not good, Good news, Christ died on the cross for my sins and took the stripes upon His back so that we can be healed!

2011-04-23T13:36:00.000-07:00

Here is one of the many pictures I took when we went to see the tulip fields, they were gorgeous!

It's a beautiful day and I'm so thankful for so many things, Luke is healthy, we are getting the lawn mowed, I'm getting the laundry done, the kids are coloring Easter eggs for tomorrow, I lost another pound, down 24 pounds and still going strong, I'm going to go for a walk in a little bit to enjoy the warm sunshine, I think you get the picture: -)

I had to bundle Luke up during our walk yesterday, even though the sun was shining it was still cold and windy outside.

Yesterday was beautiful to, but not so fun. It started out early with making Luke's formula once again, I'm so thankful for Amy, Natalie, Lance, Jamison, Isaiah, Ezekiel and Lily for their help we got done in record time, woohoo! After that I went to get my nails done, they were looking pretty bad. Came home picked up Luke, Lily and Zeke to go for a walk around Lake Waughop. Gordy, Isaiah and Amy went to a Mexico Missions trip meeting, they are going down there in June. After taking the kids to the park we splurged and went to eat at McDonalds and I let the kids play on the toys for awhile, I got home put Luke to bed, gave Lily a bath, got the boys in bed and then I took off to the store to get a few things for Easter. There's my day in a nutshell.
While I was walking around the lake with the kids I got a call from Luke's pulmonologist with some bad news. He informed me that the Luke's chest CT showed that Luke does indeed have bronchiectasis, especially in his lower left lobe. It's so bad right now that it looks like it has pus and infection in there, which made me confused as to why Luke is doing so good right now, seems to me and the doc that he should be running constant fevers and being sick with the way his lungs look. He told me that he still thinks that the best thing for Luke will be to get a trache again, that eventually if he has lots of problems and pneumonia's they might want to look at taking out part of his lung, but they would definitely not do that unless Luke is trached. I was devastated to hear this news, but thankfully I've once again decided to turn it completely over to God. We do not have another appointment with this doctor until the end of July, I'm praying that over the next few months Luke will stay healthy and when we do go back in for that appt. we will be able to put off what would seem be inevitable trache procedure. He told me that Luke could die if he got another pneumonia, I think we already knew this to be true since we almost lost him when he had his last bad pneumonia in February.

The kids can not pass up on the opportunity to climb up on a stump and get their picture taken.

Gordy and I talked about it last night and we've both come to the conclusion that Luke could die whether he get's a trache or not, it's always a possibility and has always been one. We've known for years that he is so fragile, that has not changed. Please join us in praying that God will reach down and completely heal his lungs and restore them back to perfection, I know this would be so easy for God to do, for he is the One who originally formed his lungs when he was in the womb.

Here I am in front of one of the many tulip fields

I hope and pray that y'all have a wonderful Easter day, celebrating Jesus resurrection from the grave. What joy and great peace it brings to my life knowing that Jesus willingly died on the cross for me to be saved, He took painful stripes upon his back for us to be healed, He healed the sick and brought hope to the hopeless. PRAISE GOD, I'm thankful for the fact that when He went to heaven, He left the Holy Spirit to bring us power and comfort, without that I don't know where I would be today.

Love in Christ,
Luke's Mommy Sue

You can tell by our smiles we had a great day, can you tell we are related?

Luke broke a record today, WOOHOO!

2011-04-20T11:22:00.000-07:00

Luke was in and out of the Hospital for his chest CT scan in record time. He did great no moving at all, therefore he did not need to be sedated, which was a huge answer to prayer. We will not find out the results for a few days, I'm really hoping and believing in faith that we are going to get good news.

Now I'm off to take a much needed nap, after only getting a few hours of sleep last night I'm exhausted and that's putting it mildly. Then I need to run errands today, off to Costco and Fred Meyer to go grocery shopping and to get the rest of the ingredients to make Luke's formula this week. Never a dull moment: -)

Love in Christ,

Luke's Mommy Sue

Here's a recent picture of Luke and Isaiah in the HBOT chamber. What a blessing to have these free dives, that were donated from the HUGS Foundation. It's been so nice to be able to have Isaiah go in with Luke, not only has it benefitted Isaiah, but it's nice to have someone in there with Luke when he coughs or needs his mouth wiped off. Isaiah has had some sores on his arms and legs that have not healed for many months now and we've tried everything to get them to heal and then a few weeks ago I was reading about what to do for sores that don't heal and it suggested HBOT treatments, why I didn't think of that before is beyond me, oh well I'm just thankful that the dives have a double blessing for our family and that Isaiah's arms are finally healing.

Please pray that Luke will stay still today during his CT chest scan

2011-04-20T02:42:00.000-07:00

Luke goes into the CT scan today at 10:30 a.m. I would appreciate your prayers during that time, specifically praying that he will stay still, they are going to try to do the scan without sedation, which would be wonderful. If he does move then they will take him back to sedate him and then try the scan again. I am praying and believing that this scan will show the Dr. that Luke's lungs are healing and getting better, for I know that nothing is too difficult for God.

Would you also say a prayer for my Uncle David, he had open heart surgery yesterday. I took my mom up to the Veterans Hospital in Seattle to see him last night and even though he looked terrible we were assured that he is actually doing good for someone that had been through to 2 surgeries, the first one was about 6 hours and the second one to stop some internal bleeding was another 2 hours long. Please pray for no more complications and a quick recovery time.

Love in Christ,
Luke's Mommy Sue

Still trying to process Luke's Pulmonologist Appointment, deciding to Trust God but it's not easy

2011-04-14T23:22:00.000-07:00

I was really dreading Luke' s Pulmonology appointment, I knew that if I was completely honest with his Dr. then I might hear things I did not want to hear and I was right. To be honest it is sooooo hard to continue to trust God in all things, that is so easy to say, not always easy to live. As you know from previous posts our nights are extremely challenging to say the least. It's rare, in fact I can't remember the last time I had a full night of sleep here at home, I know that I have, I just can't remember the last time. I shared with the Dr. about our challenging nights, including telling him about the times that Luke decides to just stop breathing sending his o2 numbers dangerously low, along with the fact that he's on oxygen most nights of the week. After his Dr. listened to his lungs, looked at his recent x-rays and heard what I had to say he wants me to take Luke in to get a chest CT scan, he thinks that Luke might have bronchiectasis, which is a disease where the bronchial tubes enlarge, causing a person to have constant coughing that produces a lot of phlegm, it also causes that person to need extra oxygen. He also mentioned the fact that Luke is probably going to need a trache again. That word trache sends me into a super spin, I now can think of many questions I should of asked the Dr. but I was put into a panic the second I heard that T word. I guess in the back of my mind I've been wondering if that is where Luke is going to again, not wanting to believe it though.

After the appointment I took Luke on a 3 plus mile walk at a park near the hospital, it was good to get out, I needed to cry a few or okay a lot of tears. I've been asking myself why I hate the trache so much, I mean in some ways it would bring some relief and help to our family in the fact that we would once again be able to get nursing care, but then on the flip side that means we have to have nurses in our home again, we were blessed last time to get some wonderful nurses, but that took time going through some nightmare nurses, to get the good ones.

I guess the things that bother me the most about Luke getting a trache again is:
1. Feels like we are regressing in his progress.
2. He loses the ability to make noises, without the help of a trache covering.
3. Only people that are trache certified are able to watch him.
4. I don't know how we will be able to take a kid with a trache camping.
5. The costs associated with a trache are huge, even after our insurance paid their part we often had to fork out another $200 to $400 a month.
6. You are never, ever supposed to leave a child with a trache unattended in a room.
7. The fact that he will have to go through another major surgery.
8. He will have a hole in his neck, the chances of coming down with more infections and problems are greatly increased.
9. I just don't want to go down this road again!

After crying many hours I've once again had to come to the realization that God is in control, getting a trache again doesn't mean that Luke is not going to be healed, it just means it's another road we have to take on this journey that we never wanted to go on, a painful road. I know that God is faithful and He will give us the strength we need to get through this journey, I know that I know that this is true, it's what keeps me going.

Nothing is going to happen for sure for at least another 3 months, a lot can happen in the 3 months, I am going to be praying that God will reach down and miraculously heal Luke's lungs, that when he goes in for his chest CT scan next month, his lungs will look great. I know that God is the God of miracles, nothing and I mean nothing is impossible for him to do. Would you please join us in believing for this miracle?? It's comforting to know that others are going to be joining us in believing us for this miracle, please let us know if you will in faith believe with us for this miracle.

Love in Christ,
Luke' s Mommy Sue

PS Just had to share with you two excerpts from The Streams in the Desert devotional:
April 12 - Extraordinary afflictions are not always the punishment of extraordinary sins but are sometimes the trials resulting from God's extraordinary gifts. God uses many sharp-cutting instruments, and polishes His jewels with files that are rough. And those saints He especially loves, and desires to make shine the most brilliantly, will often feel His tools upon them. R. Leighton - This reminded me of how much God must love me because I've been feeling the pain of those tools on me lately.
April 13 - Have you been looking forward to telling about trusting Jesus, but instead He is asking you to show what trust is, by waiting? YES!!!!

PSS Please keep baby Jake's parents and family in your prayers, he went home to be with Jesus and they are grieving his loss. Also please continue to keep Annie's family in your prayers, I know that they are feeling her loss greatly.

No Pump trial for Luke today. Please join with me in praying for Lance, Samuel, Jake, Juan and Annie's Family.

2011-03-30T01:57:00.001-07:00

Just wanted y'all to know that I got a call yesterday telling me that we needed to reschedule Luke's Baclafen Pump trial, I guess they have too many people out right now suffering from the flu. The soonest they could reschedule Luke was in May, oh well I figure God is in control, I have to trust Him to direct us as we seek to get the care that Luke needs right now.

Please be praying for Lance today at noon, he is having surgery on his finger to fix his severly broken bone. Last week Amy and Lance went bowling and Lance hurt his finger, at first he thought it was just badly jammed, but after spending 4 hours in the ER he discovered he broke it so badly that they are going to have to put a small screw in it to fix it.

I would also like to ask for prayers for Isaiah, he has been dealing with some sores that just won't go away on his arms, I took him into the Dr. last week to find out he has an infection in hair folicles, he was literally covered with small sores all over his upper arms. After being on a heavy duty antibiotic this week they are still not clearing up, if they are not completely better by today I will be taking him back in once again to see what else we can do to get these sores taken care. I'm praying they will be gone when he wakes up tomorrow.

Just a few more prayer requests to mention: Samuel is going in today to get his baclafen pump removed after having it for the last 5+ years, pray that his surgery goes fine and that he will have a quick recovery. Please continue to keep Annie's family in your prayers, her memorial sevice is this Saturday. A little tiny premature baby named Jake was born last week weighing only 1 pound 10 ounces and while he is actually breathing on his own he needs lots of prayers to grow enough for his parents Liz and Bryan to take him home. And last but not least my good friend Yoli's husband Juan is coming home after being stationed in TX the last year, please pray that he will have a safe journey home as he travels by himself for 2 1/2 straight days to get here.

Thank you in advance for your prayers, they are POWERFUL!!!

Love in Christ,
Luke's Mommy Sue

Birthday's, birthday's, birthday's, seems like we are always celebrating someone's birthday: - )

2011-03-29T01:44:00.000-07:00

Here is Luke getting ready to blow out the candles on his cake

Luke got a very soft blanket from Tia Yoli, he was feeling it and you can see from his facial expression loving it!

I thought this poster pretty much captures what Luke's life is all about, God has always been right by his side, no matter what he is going through.

Sorry the pictures didn't turn out better, we should have made sure we had a few good shots. Luke has been doing pretty good lately, his days are good, his nights still a challenge. I can not remember the last time we had a full night of sleep, I know that I've already shared that with you, but it still continues to be a challenge. Luke's appointment with his pulmonologist has been re-scheduled 3 times now; his Pulmonologist has been dealing with the death of his mom, please say a prayer that God will comfort Dr. R during this time of grieving the loss of his mom. I hope that when we do see him in two weeks that perhaps he will be able to find some answers to helping Luke do better at night.

Luke has a Baclafen pump trial set up for this Wednesday morning, we have to have him at the hospital at 6 am for the sedation process, he will then have Baclafen injected into his spinal cord. Baclafen is a muscle relaxant, he currently takes 20 milligrams 3 times a day, but we are not able to get enough into him to really loosen him up because it causes him to get very tired. The pump, which is a little bit smaller than a small can of tuna, is put into the body, it is filled with baclafen, a small catheter is put directly into the spine, which is then able to bypass the brain, making the Baclafen to do the job of helping to relax his muscle with out the negative side effects. We did this trial once before, not seeing much changes in his tone issues, the Dr. thinks that we could of doubled the dose they gave him last time, therefore we are going to try it one more time to see if the double dose does him more good. Please be praying for us to have wisdom in this whole process, the thought of putting a foreign object into Luke's body is unsettling to say the least but I know of so many kids who have a pump and it has made them so much more comfortable and able to bend better. Also be praying for safety for Luke while is sedated, it's always a bit scary to put him under for any amount of time.

On to some other news, this past weekend was filled with Birthday parties. We had a surprise birthday party for Lance, who is Amy's boyfriend on Saturday night. It was a lot of fun, very loud and crazy as we had 35 people over to help us celebrate. We had a taco feed, just to give you a small glimpse into how much food it took to feed all those people, we cooked up 9 pounds of taco meat, we still have leftovers, cut up two heads of lettuce, 4 cans of olives, a box of tomato's, had Lance's soon to be step mom make up some delicious homemade salsa, Yoli made a chocolate cake and a pineapple upside down cake add to that lots of ice cream and other ingredients, along with soda's for everyone and you have a whole lot of food.

Then on Sunday we celebrated my Mom's 75th Birthday, thankfully mom decided ahead of time that she wanted to go out to eat for her birthday. I am so blessed to have such a wonderful mom, she faithfully prays for Luke and our family, she is a wonderful example of a Godly woman, who sacrificially gives of her time and herself to bless our whole family.

I was asked to join the Family Advocacy Council at Mary Bridge Hospital, tonight was my first meeting. I'm excited to think that perhaps I can help make Mary Bridge a better hospital, though I already think the staff does a good job there. My prayer has always been for God to use me where he chooses to lead me. There have been many times that I have wondered why God has allowed Luke to be admitted into the Hospital so many times, I now realize that perhaps God was allowing us to go through those experiences so that we could perhaps help those that come behind us, at least I hope so.

Oh my goodness, another really long post, I really will try to keep my next post shorter.

Love in Christ,

Luke’s Mommy Sue

PS Please be sure to keep Annie’s family in your prayers, her memorial service will be held this Saturday.

Annie Sullivan went home to be with Jesus this morning, please keep her family in your prayers today

2011-03-25T23:02:00.000-07:00

Annie went to be with Jesus this morning. I went up to visit Annie and her mom Jean on Wednesday evening at Children's Hospital in Seattle. When I got up there Annie was acting rather strange for herself, she had a seizure and then starting to get very agitated. I noticed her heart rate going up and asked Jean if perhaps she had a fever, sure enough when the nurse came into check her temp, she had a fever. After awhile her sweet brothers came to visit her, they were so kind and compassionate and concerned for her well being, they kept saying that she was shaking and seemed very upset. I left shortly after the Dr. came into check out her progress, knowing that the best thing I could do for their family at that time was keep praying, which I did the whole way home. I left with a heavy heart realizing all to well what kind of stress and pain Jean and her boys were going through watching Annie suffer that evening.

I found out this morning that Annie went home to be with Jesus, the thought of her in heaven running around with a new body, singing and talking without any effort brings joy to my heart. I also find that the thought of what Jean and her husband Bill along with their other 6 children are going through at this time is heartbreaking. Annie and Luke were only a few weeks apart in age and while though their stories and diagnoses were different they both shared many common things in their lives, the doctors, hospital stays, pain, brain injuries, their large families and their families' faith in God. Please keep Annie's family in your prayers as they mourn the loss of their precious daughter and sister. To read more about Annie's journey the last few years just go to the prayers links on the left of Luke's blog and click Pray for Annie.

Love in Christ,

Luke' s Mommy Sue

Being woke up numerous times a night + Realizing we are NOT a "normal" family+ Walking faithfully = A Post that is way too long!

2011-03-24T00:24:00.000-07:00

You would think that after living this life that we have been living for so many years that I would be used to the fact that I never really get a full night sleep. Being woke up numerous times a night by alarms is in fact extremely exhausting and it has been getting me down lately. The last few nights have been soooooo hard, I wake up out of a deep sleep after only sleeping a few hours to hear the oximeter alarms going off and then by the time I do jump out of bed realizing that it is Luke's alarm going off I get woke up all the way to a adrenaline rush by seeing the fact that he is in the low 70's or the 80's, for you that don't know that is dangerously low oxygen numbers. I always check his finger probe to be sure it's on correctly, if it is then I move him, check his oxygen tank to be sure it's not empty, suction him if he needs it and then make sure his cannula has not fallen out of his nose again. Usually his numbers come up rather quickly once I get all that done and then go fall back into bed, only to be woke up again and again and again to go through those same things over and over and over again, night after night after night, I think you get the picture.

This morning I woke up in tears, telling Gordy that something has to change in our lives getting no sleep is taking a toll on both of us. Somedays I'm able to go back to sleep for a few hours, but most days I have to get up of course to get Luke bathed and fed and get my day going. People ask me all the time why I don't take naps, for one thing I've never liked taking naps, my personality type just doesn't see them as something that is productive, also it's challenging to find the time in my days to take a nap. People also tell me all the time that I need to go to bed earlier, but I will be honest with you I would rather stay up late if Luke is having a hard night than to go to bed and be woke up time and time again. There is also the fear factor when he is doing really bad knowing that if I do go to sleep I may not wake up in time to help him because I won't hear his alarm. I'm thankful for the fact that I've always been a pretty energetic person, relying on God for His amazing strength and help is the only thing that has gotten me through these past years, but I will be honest it has taken a toll on my life and I would appreciate it if you would really start to specifically pray that Luke would start to breath better at night so that Gordy and I can get some really good sleep in our lives once again.

I've come to the realization this week, which many of you already know, that we are NOT a "normal" family. As much as I like to think of us being like other people out there we just aren't. That too has been a bit of a depressing thought for me, not that I want to be just like everyone else I never really have, but I do wish that our life could be just a bit easier at times. You see for many, many years now we have dreamed about taking a trip across America, I've always wanted to go to Washington DC. When Gordy first started working at REI 20+ years ago we knew that one of the perks working there was the fact that he would get a 4 week sabbatical once he was there for 15 years, 5 weeks at 20 years, every 5 years would add another week onto his sabbitcal. We began to think and dream about the time that we could take that sabbatical and go across America with the family. He hit 15 years 1 year after Luke's accident and we knew that we couldn't possibly take our family across America with Luke's special needs, but being the optimistic person that I normally am I thought that perhaps we could do it after waiting for 5 years. He was supposed to take his 20 year sabbitical last year but thankfully REI had mercy on him and let him delay it a year, because Luke had pneumonia almost 4 straight months and we knew that he just wasn't healthy enough to go at that time. Once again we thought perhaps we would be able to do it this year but after Luke's recent stay at the hospital it has come to our realization that Luke is just too fragile to take across America and he would be absolutely miserable traveling in a van for hours on end, day after day.

To be honest with you this realization has really knocked me for a loop, everytime I think about it I want to cry and then I think to myself Sue get real, there are people in Japan right now just trying not to starve to death or they are still not sure if their loved ones lived or died during the earthquake, there are people out there that have never taken a vacation and you have taken so many, there are people out there that are hungry and would love to just eat 3 meals a day, there are people out there that are out of work and desperately needing a job, there are people out there that are homeless, there are people out there that have just lost a loved one, there are people out there that . . . . I know that with time I will be okay with not taking this trip, it just hurts right now.

At the beginning of the year I decided that I was going to start walking again, I made a new year's resolution of walking everyday this year, I quickly realized that was just a bit over zealous so I said that I would walk at least 5 days a week, so far I have averaged about 6 days a week, walking at least 3 to 5 miles a day. Walking has been really good for me, for many reasons of course one thing it has helped me to lose 20 pounds so far, which is about a third of the weight I want to lose, it has also helped me to get in better shape, it helps me to clear my mind and to spend sometime listening to worship music and spend some time in prayer, it has given me something to look forward to on those rare days that it is beautiful outside. For so many years I have blamed being "fat" on the fact that I have so much stress in my life I can't take the time to do this for myself, also I've blamed it on the fact that my thyroid is messed up, but I've decided enough excuses I'm sick and tired of being uncomfortable with the way that I look and feel and I'm going to do something about it. With God's help I'm going to keep walking and perhaps one day be a whole lot healthier.

I realize this post is mostly about my "sad" life, sorry if I have sounded like I'm feeling sorry for myself, perhaps I was:-/ I try not to dwell on the fact that our life is so challenging, but since this is my journal of Luke's journey since his accident I needed to share this if nothing else but for myself, because you see I don't plan on staying this way for long. I know without a shadow of a doubt that I will overcome this feeling of discouragement and weariness, because I know my God is faithful and He has promised to never leave me or forsake me, He has told me that if ask Him to carry my burdens He will, He has also promised me that I can do ALL things through Christ who gives me strength, He has also promised me that if I wait upon Him, He will renew my strength, I will mount up with wings as eagles, I will run and not grow weary, I walk and not faint, if I can only learn how to wait upon Him and trust Him to be my all and all.

Before I sign off I do want to let you know how Luke is doing. I did end up taking him into Urgent Care on Sunday, the Dr. there thought he had pneumonia, but I'm not sure because his x-rays are always cloudy looking. He is doing better, tonight being the best night he's had in a long time Praise God. I promise to sit down again soon and post some pictures from Luke's birthday party and give you some more details about all Luke's appointments he has scheduled for next week.

Love in Christ,
Luke's Mommy Sue

PS PLEASE pray for Annie, her blog is posted to the right, she has been in the hospital for about a month and desperately needs a touch from Jesus today.

Your prayers were answered Gordy and I had a wonderful time away: - ) But once again Luke is in need of some prayers, he's sick again.

2011-03-20T11:43:00.001-07:00

Multnomah Falls, Oregon

All week I've been wanting to sit down and let y'all know about the wonderful, relaxing time that Gordy and I had together on our get away, but to be honest I couldn't seem to find the energy to do it. God must of known we really needed the sleep and relaxation because we've come home to many sleepless nights once again. Yep, you heard right Luke is not doing so well once again. I was so excited to get some uninterrupted nights of sleep but I found the first two nights my body is so used to be woken up many times a night that I would still wake up about every one to two hours. Finally the 3rd night away I slept all the way through and the last night was the most restful sleep I've had in a long time.

Here is the first falls we stopped at we mistakingly thought this was Multnomah Falls, not even close to the beauty and height of the real thing.This is Gordy and I after our 2 mile round trip up to the top of the falls to overlook them, it was a tough hike at times but so worth it, it was so beautiful and magnificent.

Here I am by the river at the top before the falls, I love rivers it's one of the most relaxing thing in the world to sit by them and enjoy the music they make.
This Seagull adopted our deck at our Hotel in Lincoln City, we decided to name him Charlie

One of my many walks on the freezing cold, windy beach. Can you see the sand that was blown onto my face? It was so windy I thought it would knock me over.

This was a new beach we discovered on our way home. It's called Oswald Beach you have to walk about a mile to get to it and boy is it worth the walk it was gorgeous.

When we were down at the beach we saw a huge black cloud coming our way, it started raining as we left the beach, this is a cool picture with the raindrops on the rocks there. By the time we got back to our car we were both wet, but thankful we got there when we did because the downpour began once we left the parking lot. What great memories!

Please be praying for Luke he had a very rough night and so far today has been battling a high heart rate, is very congested coughing out greenish/yellowish gunk, along with being on extra oxygen today. I'm debating whether to take him into Urgent Care, I don't think he has pneumonia, hasn't had a high enough fever for that it's only been a low grade fever.

Love in Christ,
Luke's Mommy Sue

Luke is doing okay, not great, please continue to keep him in your prayers

2011-03-14T12:48:00.000-07:00

Thank you for your prayers:- ) Gordy and I are having a wonderful relaxing time. Yesterday we climbed 2 plus miles to get to the top of Multnomah Falls and back down, it was a challenging hike but definitely worth the effort. Wish I could upload a picture from my phone but I don't know how to, oh well I'll do it when we get home. Currently we are staying at a hotel right on the beach in Lincoln City, OR. The view from our room is amazing! I'm getting ready to go for a long walk on the beach, looking forward to some prayer time during my walk, I always feel so close to God when I'm at the ocean.

The kids are doing good at home, of course they miss us and we miss them but we know we will definitely be better parents after this time away. Luke is doing okay he was on more oxygen than I would like to see last night at Yoli's house, but not enough to warrant coming home a day early. Please continue to keep him in your prayers, thank you.

Love in Christ,
Luke's Mommy Sue

Would you please keep our family in your prayers the next few days?

2011-03-12T13:59:00.001-08:00

Would you please keep our family in your prayers this weekend?? Gordy and I are going away for a few nights of much needed sleep and relaxation. PLEASE pray for Luke to stay healthy, he's been having some rough days and nights lately, we leave feeling a bit apprehensive about leaving him, but we know that we are in desperate need of some sleep, sleepless nights do catch up with a person after awhile. Also be praying for the rest of the kids to stay healthy and be good while we are gone. Natalie and Josh are staying with the kids all day Saturday and Sunday, Luke is going to Tia Yoli's house on Sunday night and then Amy is filling in the rest of the time while we are gone.

Thank you in advance for your prayers, they are so powerful!

Love in Christ,
Luke's Mommy Sue

How is Luke Doing? Great!

Thank you for your prayers, Luke's surgery went great and he is doing so much better

Luke needs your prayers today, he has surgery this morning at 8 am

WOW, What a Week!!

To go to the Hospital or not that was our huge dilemma this week! Finally ending up in the ER on Thursday night

Chosing to TRUST God, on the good days and the really bad days, definitely not easy but so worth it!!

Double The Blessing, Double The Fun!!

Happy 2012 I Hope And Pray This Year Brings Many Miracles!

Erk, Erk and Double Erk!! I'm wishing I would of blogged sooner when I had good news to share, because now it's not good!

Our Wonderful, Great, Refreshing, Amazing, Awesome Trip in Pictures

A Much Needed Break

Tis the season to be Thankful

*No Peace = No Jesus* *Know Jesus = Know Peace*

The Facts of Life with Luke

Urgent Prayers Needed Today For Lonnie

24 Very Long Challenging Hours

Seems like lately it's one trial, after another trial, after another trial . . . . .

What a great weekend was had by all during our 2nd Annual Mom's Retreat

We sure would appreciate extra prayers this weekend

So many tears shed today, for so many reasons

My oh my, here's my journal entry about the week that never seemed to give us a break

Erk, Luke has pneumonia once again

Sometimes I feel like a broken record, sorry:-(

Oh my goodness, what a really long day:-/

The Good, The Bad and The Ugly News about Luke

Double The Fun Double The Giveaways - This week on 24/7 MOMS Live

Sometimes the hardest days can be the most rewarding days

Opps, I posted too soon about Luke's GI study, seems they may of found gallstones:-(

Luke's GI study results + new seizure activity + casting opportunities shot down before even being tried = A way too long post all about Luke

Announcing our 2nd Annual Retreat for Mom's with a child who has suffered a near drowning accident. Would you like to help??

I know I've said it before, but I have to say it again, life has been way too busy lately!

7 Years Ago Today

Keeping it real, as I share my honest thoughts today

I have come to the conclusion that I no longer like mysteries, now that Luke's life has become one:- /

Blood in Luke's g-tube + Constant suctioning - A Desperate Plea for Prayer

Back to reality after a wonderful long weekend full of God's amazing "gifts" of sleep and refreshment

I feel like I am living through one nightmare after another, Luke is doing horrible at night once again.

The Big News of the Day is Luke is doing better, Hallelujah!!

Sunday was a day that I don't think I will ever forget!

Luke's Roller Coaster ride has been trending way down this week, please pray that this trend will turn around

Thankful to be alive today and for God's protection this past week during a hike to Comet Falls at Mt. Rainier

Once again I have to say a BIG thank you for your prayers, they are so powerful!!

We would really appreciate your prayers today

A quick note to let you all know we are home from our vacation and Luke is doing okay.

Our very challenging and difficult day at Disneyland with Luke: -(

Hot, hot, hot it sure is hot here!

We're finally off, California here we come:-)

What a Crazy Roller Coaster Week Full of Some Huge Blessings and Challenges

The Good, The Bad and The Ugly News from Luke's last Doctor Appointments

To Go or Not To Go, that's the question?? Being confident that God has our answer:-)

Luke was finally approved to get the "Vest Machine" and it has been making a huge difference in his life, PRAISE GOD!

The Good News vs. The Not So Good News

Fear often brings you to forget those things that you know are true, I'm trying so hard to not let fear overtake me these days

Bad news, Luke's lungs are not good, Good news, Christ died on the cross for my sins and took the stripes upon His back so that we can be healed!

Luke broke a record today, WOOHOO!

Please pray that Luke will stay still today during his CT chest scan

Still trying to process Luke's Pulmonologist Appointment, deciding to Trust God but it's not easy

No Pump trial for Luke today. Please join with me in praying for Lance, Samuel, Jake, Juan and Annie's Family.

Birthday's, birthday's, birthday's, seems like we are always celebrating someone's birthday: - )

Annie Sullivan went home to be with Jesus this morning, please keep her family in your prayers today

Being woke up numerous times a night + Realizing we are NOT a "normal" family+ Walking faithfully = A Post that is way too long!

Your prayers were answered Gordy and I had a wonderful time away: - ) But once again Luke is in need of some prayers, he's sick again.

Luke is doing okay, not great, please continue to keep him in your prayers

Would you please keep our family in your prayers the next few days?

No Peace = No Jesus Know Jesus = Know Peace