I went with Option #3 and I'm so glad I did, Luke has pneumonia again:-/

After much thought and wavering on my decision, I finally decided to go with Option #3, cancelled Luke's Dentist appointment and didn't take him to HBOT. I also e-mailed his Pediatrician who just happened to be out of the office that day, but the nurse called to set up an appointment for me to take him in today.
I almost cancelled his appointment and when I got to the Dr.'s office was kicking myself for wasting the time to take him in, but I'm glad I didn't cancel the appointment. Dr. G decided that I should get an x-ray of Luke's lungs to be sure he wasn't dealing with pneumonia, I was so close to talking him out of it, but am glad I didn't. The Dr. looked at the x-ray in his office and told me that it didn't look like pneumonia to him and as I looked at it I didn't think it looked that way to me either. But after getting home I got a call from his Dr. saying the radiologist said that, yes it's pneumonia, ERK! Thankfully Gordy was out running some errands so he was able to go pick up his antibiotic. This is the first time since December Luke has pneumonia, yes I am thankful that he's hasn't had it in a few months, at the same time I'm so bummed that he has it now.

I was getting ready to feed 7 boys dinner when the call came in from the Dr. Isaiah who happens to be turning 13 next weekend had some friends over for a birthday celebration, which after dinner I took them skating. We had a blast skating, what a blessing it was to be able to just go have some fun with the boys tonight, it was just the right thing to get my mind off the disappointing news I got earlier in the day.

Here are the guys being silly as they wait in line to go skating:-)

Luke does seem to be doing better tonight, he has only alarmed a few times since I've been home from the skating rink. I better head to bed as I will need to be up at a decent time in the morning to feed all the boys staying over tonight:-)

Love in Christ,
Luke's Mommy Sue

Oh, what to do, what to do?? What would you do if you were in my shoes??

I'm in a quandry, Luke has been fighting getting sick lately, which has been going on for about a week now. Last night was a NOT a good night at all, getting up every few minutes to fix his oxygen cannula or change the amount of oxygen he was needing. The reason I haven't taken him to his Dr. is because he doesn't seem to be running a fever, therefore I don't think he has pneumonia or anything major. I'm thinking it might be the weather changing or some allergies, who knows though, I sure don't, would you?

Today I am supposed to take him to the Dentist to get his teeth cleaned and then go out to HBOT for a dive. So here's the problem, he's on oxygen and sounds terrible, though he has no fever so I'm not sure if he's sick or just dealing with what seems to be his normal crud. Oh what to do??

• Option #1 take him to the Dentist with his oxygen tank going and then head out to the HBOT chamber, knowing that I may need to pull the van over a few times to suction him.
• Option #2 Call his Pediatrician for an appointment to get him checked out today.
  
• Or option #3 cancel his dentist appointment and HBOT dive and stay home with him today and wait one more day before I take him into his Pediatrician.
  
• Oh what to do?? What would you do?

People always tell me that they "don't think they could do what I do", they say things like "I don't know how you do all you do", another words they are thankful that they aren't in my shoes. I get that, I really do. Sometimes I don't know how I do all that I have to do either, the decisions I have to make some days are enough to send me over the edge. I often respond to those statements with I just do what I have to do, you would do the same if you were in my shoes wouldn't you? So I really am curious to know what you would of done in my shoes today, would you have gone with Option #1, #2 or #3? I don't often ask for comments but today I am, please humor me with your response:-)

Thanks,

Luke's Mommy Sue

Luke turned nine and I wish I could say all is fine, but no here is: The Good, The Bad and The Ugly Truth about Luke at this time

Let me start with the good news, Luke turned nine on March 10th. Luke's birthday is a very bittersweet day, so so glad that he is here with us still, so so sad that he has not made more progress this past year. The challenge of having a birthday party for a little boy that should be excited about opening his presents that he will want to play with, eating his cake and ice cream or just the simple task of blowing out his candles are realities that have not happened these past 8 birthdays. We are blessed by the fact that his smiles told us that he was enjoying himself, that day:-)



It's hard knowing where to begin to share with you all the bad news we've received about Luke lately. At his GI appointment we found out that he's still under 50 pounds, at that size he's not even registering on the growth charts. The good news that day is that the Dr. did say that Luke is looking good, just wants to see him gain some weight, more good news is that fact that he's easier to carry at his current weight, but I realize that he really does need to gain some weight, which might be bad news for our backs.

My goal lately is to get Luke into the HBOT chamber as often as I can, the challenge has been that I've already had to cancel 3 times because he's been too congested to go in this past week.

More bad news is the fact that we still are not getting the little seizures he's having under control, the medication he's been on has not been working and I'm reluctant to increase the dose as it causes Luke to get "junky" congested each time I give him that medicine. We go back to see the Neurologist on May 1st, to discuss other options.

The Ugly news was hearing the results from the recent MRI he had done on his knees. His Ortho Dr. called me the next day saying that his knees don't look good, in fact his knee caps are no longer on the top of his legs they have moved to the outsides of where they should be, he also no longer has a good curve in the cartilage. This news boils down to the fact that the Dr. wants Luke to do another Baclafen pump trial to see if we can loosen him up before she does surgery on his knees. The big bummer is the soonest we can get in to do a pump trial is May 8th, that means waiting another month to do anything to help his legs.

Some great news is that Amy is marrying the man of her dreams, yep Lance asked her to marry him and she said yes:-) So that means this summer is going to be a very busy time with 2 grand babies coming in July and then a wedding in August. Exciting times!!!

I wish that somehow they could get Luke scheduled sooner for the pump trial so that we can get the ball rolling on his surgeries. Not that I want Luke to have more surgeries, in fact the thought of more surgeries literally makes me feel sick to my stomach. But the plain fact is that if we don't get his legs bending we are soon not going to be able to take Luke out anymore because he will be unable to ride in our van. As it is right now getting him in and out of his bed, the bathtub and our van is extremely challenging to say the least and each day we do nothing about his legs make it more of a challenge.

I don't mind sounding desperate when I ask you all to continue to pray for Luke, PLEASE pray for his seizures to stop, PLEASE pray for his legs to loosen up and bend, PLEASE pray he will start to put a few pounds, PLEASE pray that Gordy and I will continue to stay strong and that we won't lose hope, PLEASE pray we will continue to hear God's voice when it comes to making all the difficult decisions we have to make concerning the upcoming surgeries that Luke has had to endure. PLEASE pray . . .

Love in Christ,
Luke's Mommy Sue

Just thought you might like to know that Gordy and I did have a nice time on our break away last month. We had a great time exploring some new beaches, a lighthouse, a waterfall and a octopus tree that we had never seen before all on the Oregon coast near to Tillamook. Though it was a bit stressful at times, because Luke got sick the day we left and each day we wondered if we should go home, but we decided that we HAD to renew our batteries if we were going to have the strength to continue on this journey we've been on now for so very long.

Please pray for Luke's MRI to go smoothly today, for him to start sleeping better at night, for his seizures to stop, for his knees to bend . . .

Sometimes it is so hard to blog, especially when I feel so defeated and down. I know that God has a plan for all of our lives and I trust Him no matter what happens, but some days my faith feels shaky and the hope that I desperately hang onto feels almost gone. I know God's word tells us not to be anxious about anything, to trust in the Lord with all of our strength and not to lean on our own understanding, but some days this is so hard to do.

In a few hours from now I take Luke into the hospital to have a MRI done on his knee's, the thought of having to have him sedated for hours during this procedure sends chills down my spine. I debated long and hard whether sedation was necessary, but after talking with tech that will do the MRI it was decided that if Luke moves at all the MRI would have to be done over again and putting him into that machine another day is just not acceptable to me.

Here I sit at the computer knowing that I will need to get up in a few hours to get ready for another day spent at the hospital, another day putting Luke under sedation, another day of having to put all my trust in Jesus to bring him through another procedure, another day of pure boredom, another day spent away from my other children, another day . . . You may be saying to yourself why are you awake Sue? The answer is because Luke is still not sleeping, he's back in his room as I type this wide awake, yelling for me to be by his side, I have prayed with him to go to sleep, I have begged him to go to sleep, he just doesn't even seem tired at all, it's so frustrating. I know that once he goes to sleep his oxygen numbers will plummet for this is usually what happens once he's out for the night. So what's the use if I go to bed now I will just be up soon with his alarms going off, yep it's frustrating to say the least, especially since I have to be ready to go to the hospital in about 4 hours.

Please won't you pray that Luke's knee's will still have good rounded cartilage on the end of the bones so that Luke will be able to have the knee surgery that will once again allow his knees to bend. I realize that God could just make his knee's bend and we wouldn't need this surgery, that's my first prayer, but for some reason God has not allowed his knee's to bend now for 7 long years. The bigger and taller he get's the more challenging it is to carry him, to put him into the bath tub, to get him into his car seat, to find a wheel chair stroller that will accommodate his legs and to take care of all of his needs. We will find out the results of the MRI in about 2 weeks when we go back to his Orthopedic Dr.

FYI: Luke has a GI appointment on Wednesday afternoon, I hope to hear that they are happy with his weight progress, though I'm thinking they probably won't be since he is still only weighing 50 pounds. Luke has also been having more seizures lately, I've called the neurologist office and we are currently playing phone tag, please pray that God will either stop these seizures or we will be able to find a medication that will help stop the seizures without all the horrible side effects most seizure medications have.

Thank you in advance for your prayers,
Luke's Mommy Sue

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.