Faith in God is the substance of things hoped for the evidence of things not seen - Trusting God for both Quanity and Quality of Life for Luke

Just wanted to say thank you for your prayers this past week. Luke seemed like he was getting sick on Valentines Day morning, but by afternoon his fever was gone, his heart rate was back to normal and his oxygen needs were beginning to get better. We did end up having a babysitter for the kids that night while we went out with our good friends, Juan and Yoli. I did realize a few very important things that I will try to remember if we have another babysitter anytime soon. For one thing I need to be sure to tell whoever it is that Luke will have times where his oxygen numbers will drop, don't panic what a minute to see if they go up on there own, if not then check his probe, if that's good and his numbers don't get better make sure his oxygen tank is not empty and then if all those things are ok and his numbers don't get better turn up his o2, if that doesn't work turn on the oxygen concentrator and put on his mask. Yep, I had to walk the babysitter through all those steps on the phone, just so thankful that she was willing to stay and work through them. Finding this babysitter was like finding a fine jewel, she is definitely worth her weight in gold, we are hoping she will say yes next time we need her!
Appointment update:
Surgery follow up went great, only took a few minutes for the surgeon to say that Luke's incision sites look great. We did find out that his gallbladder did have some pretty extensive damage, once again reaffirming the fact that we made the right decision to get it out.

Pulmonology appointment went ok, Dr. said that he sounded ok, though more course and junky then the last time we were there. After some discussion on ways to help Luke we decided that we would try to get a cough assist machine for Luke to help his coughs more productive. The Dr. did mention that at this point our main goal for Luke is for quality of life, not necessarily quanity, I'm pretty sure the Dr. doesn't even have a clue to how painful it is to hear those words. Because I want both quality and quanity, I realize that without a touch from Jesus that is exactly the reality of Luke's life. I'm so glad that I have faith in God and am able to put my hope in Him, for He truly is our only hope for Luke's life to get better.

Blood work showed that Luke's seizure medication is where it should be, his liver panel looked good and his other tests looked pretty good also. I'm still not sure if I want to keep Luke on this medication as I'm not seeing any changes in his seizure activity and I'm pretty sure it's causing Luke to be more congested at times, as this has been known as a side effect in many kids.

Luke's Orthopedic appointment was the best appointment of the week. I'm ashamed to say that I was dreading this appointment more than all the other appointments he's had recently. His new ortho Dr. first asked why we were there, then examined Luke and then talked about the findings of his last CT scan. She told us that she's never seen a child like Luke before, his hips are still in socket though unlike so many children that are similar in his diagnosis they actually do come out of socket in the front, but they go back in again. All the other kids that she's seen similar to Luke have the problem of their hips dislocating in the back not the front. The other thing that makes Luke so unusual is the fact that his legs are extended to the point that it doesn't allow his knees to bend. We talked about his knees for quite awhile, I was so afraid that once again I would be told that nothing could be done for them, but no she said that if Luke still has rounded cartilage on the ends of his knee sockets she thinks that she can help get them to bend again. That was music to my ears. We are going to schedule a MRI for his knees and then a follow up with her to see what we find out, then go from there.

The only reason I was able to go into his ortho appointment with peace in my heart is because I truly gave the outcome of the appointment to God. I decided this morning that I would trust in the Lord with all my heart and lean not on my own understanding, in all my way acknowledge Him and trust that he would direct our path, Proverbs 3:5-6. Why am I amazed at the fact that God really does direct us when we allow Him too?? You would think I would know this by now.

Gordy and I are leaving tomorrow, hopefully by early afternoon for our much needed break. Please be praying for all to go fine while we are gone. The kids go to Juan and Yoli's Friday afternoon until Saturday afternoon. On Saturday Natalie will cover the night and Sunday daytime, then Amy will take over until we get home Monday night.

Last but not least please keep my dear friend Annie's daughter Izzy in your prayers Friday, she is scheduled to go in to have major back surgery tomorrow. She will be in surgery for about 10 hours and then be in the PICU for about a week and then another week in the hospital. Also pray for my good friend Lindsey's son Santana who had back surgery last month and had major complications this last week, they found MRSA deep inside the wound, after spending the last week in the hospital he's finally going home tomorrow, but he still has very long road of recovery ahead of him as he goes home with on IV antibiotics for at least 3 to 6 months.

Love in Christ,
Luke's Mommy Sue

A quick prayer request needed for Luke today

Luke woke up with a fever today, very congested, needing extra oxygen and a high heart rate:-) Would you please pray for a speedy recovery we actually have a babysitter coming tonight to watch him and the kids while we go out to celebrate with our good friends, Juan and Yoli's it's their 25th wedding anniversary. This is the first time we've actually had a babysitter in a really long time. So don't want to cancel our evening we've been planning this for a long time.
Would you please pray that he makes a speedy recovery, because as you know if you read my last post we are hoping to get away this weekend. Luke being sick is par for the course as previously mentioned it always seems to happen before we go somewhere:-(

I hope you have a Happy Valentine's Day, enjoy yourself and give someone an extra hug today!

Luke's Mommy Sue

Proactive, that is what I'm going to be this week in asking you for your prayers

Proactive- Serving to prepare for, intervene in, or control an expected occurrence or situation, esp. a negative or difficult one; anticipatory.

That is exactly what this post is all about. You see Gordy and I are planning a getaway next weekend, because we are both desperate for some sleep, did I say desperate, yep that's what I meant. It seems like anytime we try to get away for a much needed break from the constant care of our precious Luker man he always and I mean always seems to get sick. Somehow he knows we are leaving even if we don't talk about it around him, I'm not sure why but it always happens.

Part of me feels just a tiny bit bad for being able to get away for the weekend, I know so many that are on this journey that are unable to ever get a break and I'm truly sorry for that, not sure how they go on. But then again the majority of the people that I know that have children similar to Luke's severe needs have nurses, they are able to get a breather from the constant care that they have to give, whether it's just a night nurse that takes over for them a few nights a week so they can get some uninterrupted sleep or a day nurse that gives them a break.

We are blessed in the fact that we do have some help in the mornings with my sister Cindy coming over 2 mornings a week and Natalie coming over 2 mornings also, them coming over is the only reason that I can go on some days, that few extra hours of sleep keeps me sane. We also have our precious daughter Amy still at home, she is a huge blessing to do all she does to make our journey easier.

Gordy and I will be celebrating our 29th wedding anniversary this summer:-) I've had people ask me many times how do you stay married that long?? We are blessed in the fact that we've always been able to keep our communication lines open through the really hard times and as you all know we've had some really hard, almost impossible days. I would be lying if I said that things have always been perfectly fine, nope we've definitely had our bad days and weeks, but we are committed to staying together. We made the decision on July 22, 1983 that we would stay together through the good times and bad times PERIOD. The only way we've found the last few years to stay strong as a couple is to get away from the constant stress that we live under, being sleep deprived on top of handling all Luke's medical needs, along with the needs of our other children and then adding on top of that Gordy has a pretty stressful demanding job makes some days seem very challenging to say the least.

Bottom line I am trying to be more proactive in my life today. Just as Gordy and I are being proactive in our marriage by being sure to keep it strong during a time that we could just curl up and give up, we have decided to keep our relationship strong by making it a priority this coming weekend. Therefore we are humbly requesting that you would please keep our marriage, our family and Luke's health in your prayers this week as we prepare to take a much needed break away. Thank you:-)

Also wanted to remind you that this week will be full of way too many appointments for Luke. Tomorrow I have to take Luke into to get his blood drawn to test his seizure medication levels in the morning, then he has his follow up appointment with the surgeon at 1 and last but not least his Pulmonologist appointment at 2:45. Prayers would be appreciated to get through our Monday.

Love in Christ, Luke's Mommy Sue

I love it when Luke and Lily get to sit down and watch a movie together. Lily enjoys reading books to Luke and even has him playing with her dolls at time, Luke seems to loves it!!

Services, Seizures, Sunshine, Seizures Medications, Smiles & Seizure Frustrations

Last weekend I was honored to be asked to be a part of a panel of 3 people talking about trials and adversity in our lives and how with God's help we've been able to go on in our lives even though at times those hardships seem like they made our lives look almost hopeless. One of the men talked about how his trials were brought on by mistakes he had made in his life, taking drugs, drinking too much alcohol and eventually getting caught selling drugs which put him in the local jail for 53 days. He talked about how he began to read through the book of Proverbs in the Bible every day and how God helped him to gain wisdom during that time of severe pain and adversity in jail and how now God is using him to bring others to become Christians. The other gentleman talked about how he had to learn to trust God during the past 12 years when he literally lost everything financially in his life, how he had to learn to forgive others for not coming through with things they said they were going to do and how he had to learn to forgive himself for the mistakes he made that led to his financial destruction. Then I shared with the church about Luke's journey and how I have come to rely on Christ's strength alone, that there are some days that the only way I'm able to keep going is by quoting the scripture, I can do all things through Christ who gives me strength over and over again until I begin to believe it. It was not easy sharing the tragic story during each of those 5 services over the weekend, the ONLY way I was able to get through each service was knowing that it God who gives me the strength to go on.

Luke was scheduled for an EEG on Monday afternoon; I had almost cancelled that appointment thinking that we hadn't seen any seizure activity lately so why put him through another EEG just to hear the same report. You can imagine my surprise when the EEG tech said that she had called the neurologist in because Luke was showing quite a bit of seizure activity, therefore she would not unhook Luke from all the wires until the Dr. had an opportunity to come and see him. What should have only been an hour appointment lasted just about 4 hours, we left there with a new script for an increase in the current seizure medication he has been taking lately and with orders to have his blood taken next Monday to be sure his seizure medication is at a therapeutic level. I asked the Dr. what kind of side effects this medication has and was told that they were not anything worth worrying about. I left the clinic feeling like I had been punched in the gut, I was so surprised and saddened to hear that Luke is having new kind of seizures; it was a night of many tears.

Tuesday I woke up to an absolutely beautiful sunshiny day, we don't see many days like that in February. In fact it was so warm I was able to go on a walk/jog without a coat on that day. I remember singing along with the praise songs on my iphone while I was walking, just thanking the Lord for blessing me with such a gorgeous day. I broke a new time record for the 4 miles I walked that day, it was a gift from God to be able to enjoy something as simple of enjoying that time with no stress bothering me.

Wednesday I woke up way later than I wanted to, poor Luke stayed in bed way later than normal that morning. I had a hard time getting anything accomplished, just felt worn out from the week already and it was only half way done. That day I wrote a post out on my fb to see if any of the mom's on a near drown site had any experience with seizure medication that Luke is currently using, hoping to hear a good report about this med he is on. Later that afternoon I spent about 3 hours in the kitchen cooking up a ten pound package of hamburger making enough taco and spaghetti meat for about 6 meals, including our meal of taco’s that evening.

Thursday morning I checked my fb to find many of the mom's posted that their kids had used Depakote (Valporic Acid) some with no bad side effects, other with very bad side effects, the worse being that one of them almost had serious liver problems because of that med. That once again sent me into a spin, I was very angry that Luke's neurologist didn't even mention that one of the possible problems with this medication can be very serious liver damage along with a long list of other problems. I went for a long walk, during which time I spent most of it crying out to God, asking him to help me not to be angry at this Dr., asking him to lift some of the burden I've been carrying lately with all of Luke's current medical needs, asking him to work a miracle today, asking him to help me to stay strong, because I was feeling so very weak, I'm sure that anyone that saw me walking and talking to myself probably thought I was a very needy lady. I took Luke to the Hyperbaric chamber in the afternoon, which I'm trying to do again knowing that HBOT helps with seizures and also will help to completely heal his surgery wounds, which by the way are looking really good.

During all this week I'm so very thankful that Luke seems to be his smiley self again, after losing that smile for so long it is such a great relief to once again be blessed with his sweet smile. He also seems to be doing pretty good, except for the fact that he has been extra "junky" lately.

PLEASE be praying that God will give me wisdom to know exactly what to do about this current seizure medication Luke is on, while I don't want him having seizures, I also don't want his liver to be destroyed by this medication. Also be praying as we have quite a few appointments coming up next week. Monday I have to take him in the morning to have his blood work done, and then we have his surgery follow up appointment at 1 pm and his respiratory follow up appointment at 2:45, a very full day of appointments. We also have an orthopedic appointment on Thursday, which is the appointment I'm trying so hard not to be anxious about, especially since we have to find a new Orthopedic Dr. since his last one moved away last month. I already know from the CT scan Luke had many months ago his hips are out of socket, I’m praying that this Dr. will not just tell us that Luke’s hips don’t really matter anymore since Luke does not and will not walk for the rest of his life, that is what I’m usually told by these Dr.’s. Have I said how hard these appointments can be?? Thank you for your continued prayers, they are what keep us going:-)

Love in Christ,

Luke’s Mommy Sue

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

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

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!!

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

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!!

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!!

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!

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!

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:-)