Wednesday, July 29, 2009

Let us hold fast the profession of our faith without wavering; (for he is faithful that promised;). . . No Baclafen pump trial today

I got up very, very early today to get ready to take Luke in for his Baclafen Pump trial, we had to be at the Hospital by 7:00 a.m. we were only a few minutes late. It was hard getting up that early since I only got a few hours of sleep last night, our house is just way too hot. Anyway after the Dr. listened to Luke's lungs and hearing that Luke has had pneumonia twice in the last two months he decided that we should reschedule Luke's trial day. I had a peace about this as I had prayed before we went today that God's perfect will would be done on whether Luke should have this procedure done today. Though I was a bit upset also, as I had taken Luke in on Monday for an x-ray and the Dr. that looked at the x-ray said that he thought that Luke would be okay for the procedure today. I had also mentioned it to the Dr.'s nurse that was to do the procedure today, that Luke had had pneumonia, I wish they would of thought through this a little better last week, oh well, it really is okay, just venting a little bit.

I have put a call into Luke's pulmonogist today to see if I should take him in, I would love to get this pneumonia taken care of for once and for all. Would you please join with me in praying that God will help Luke to get and stay healthy, it's so hard to continue on this Luke Roller Coaster ride. I'M SO READY TO GET OFF THIS RIDE!!

The Lord has reminded me lately, that having faith is believing in things you can not see. Sunday morning Joshua preached a awesome message on this and then on Sunday night I heard just about the same message at Victory Life Center. On Monday this was my scripture for the day: Let us hold fast the profession of our faith without wavering; (for he is faithful that promised;) and let us consider one another to provoke unto love and to good works. Hebrews 10:23-24. God is faithful and with His Mighty help I will not waver in my faith, for I truly believe that nothing is impossible with God!

Love in Christ,
Luke's Mommy Suzi

Tuesday, July 28, 2009

It's Hot, Hot, Really Hot Here!

We as with the rest of America are trying to survive a heat wave that has hit our area. This week temperatures will be in the high 90's all week long. Last night when I got home around 8:30 the house was 90 degrees, after getting all the fans going it cooled down to 86. Luke does not do well with the heat his oxygen levels go way down, he had to be on a liter of oxygen for some time before he finally cooled down and then we were to turn down his oxygen for the rest of the night.

I took Isaiah along with 7 other kids to our church kids camp yesterday, which is in Sequim about a 2 hour drive away. Since it was out near Pt. Townsend, where Matt the Rolfer lives I took Luke along. Matt was very impressed with how good Luke is doing, he said his muscles and deep tissues are feeling really good, he asked me what we are doing different? I really did not have an answer, except to say we've had lots of people praying that Luke would start to bend and his muscle tone would get better.

I took Luke in for a follow up x-ray yesterday morning and recieved the news from the Dr. that his lungs are looking much better, therefore we can go ahead with his Baclafen pump trial tomorrow. I have to check Luke into the Hospital tomorrow morning at 7:00 a.m. for the procedure to begin. He will have to be put out while they inject the a high dosage of baclafen into his back. They will check his range of motion before they begin, then again after 2 hours, then one more time 2 hours later, then we are released barring no complications hopefully around 1 p.m. If this trial show a lot of improvement in Luke's muscle tone and allows him to bend his legs, we will then set up a date to have the surgery to put in a pump that will deliver baclafen into his system all day long. The nice thing about the pump is the fact that it will by-pass his brain, therefore not causing him to be sleepy most of the day. I know the pump has really been a huge blessing for many children, I also know that for some it has not been good at all. We really need God's wisdom to know what is best for Luke, will you join us in prayer so that we will really hear God's voice in this matter??

As mentioned in my last post we went camping last week, then celebrated Daniel, Josh who is Natalie's fiance and Sarah, Daniel's girlfriend birthday's. Here are some pictures from their party hope you enjoy.

Love in Christ,
Luke's Mommy Suzi

Thursday, July 23, 2009

We are camping and Luke is loving it!

We've been camping this week, Praise God Luke has been doing great, though the heat has been bothersome at times. Mind you I'm not complaining about the heat, I would much rather it be warm than cold. I came home yesterday to celebrate our 26th wedding anniversary, I surprised Gordy who thought we would be spending our first anniversary not together. We had a wonderful evening we went out for dinner at Anthony's and then on a drive through beautiful Pt. Defiance Park.

We will stay out at the camp ground until Saturday night, hoping we won't melt when we come home since it's supposed to get up in the 90's this weekend. That's hot for people with out air conditioning. Tomorrow we will celebrate Daniel's 24th and Josh's 26th Birthday's with a steak BBQ, it will be so much fun to have the whole family there along with my Mom and Dad.

Next week we will back to our appointment and Dr. schedule. Monday morning I take Luke in for an x-ray to be sure his pneumonia is gone, then taking Isaiah along with the other kids at the church to kids camp in Squim, which is about a 2 hour drive, on the way home I will take Luke to see Matt the Rolfer who has his office in Pt. Townsend. Tuesday will be a catch up day at home. Wednesday I have to have Luke to the Hospital by 7 a.m. for check in, he will have a Baclafen Pump trial, which means we will see if the pump would be able to help Luke with his tone issues. If it works out to benefit him we will then need to schedule him for surgery, but I'm not thinking that will happen until after Natalie's wedding sometime. Thursday is Luke's OT/PT appointments and then Friday I hope to be able to do something fun with the kids. Saturday I will be heading back out to Squim once again to pick up the kids from camp.

Well I really need to get going, the kids are all waiting for me to get back to the camp ground. I hope y'all are not melting during this extremely hot summer we are having.

Love in Christ,
Luke's Mommy Suzi

Thursday, July 16, 2009

Luke continues to improve, once again thank you for your prayers!

Just wanted everyone to know that Luke seems to be doing better and better everyday, thank you so much for your prayers. Though I don't think he is quite at 100% yet, he still seems to be miserable at times, but not complaining like he was two nights ago. He is still congested and needing to cough out some thick gunk, but at least he is doing it on his own for the most part. It's been warming up for us here in WA again and while we do enjoy having a warm summer, it not so easy on Luke to be in the heat. Last night he was on no extra oxygen and tonight he is on a little bit. Please join with us in praying that this will be the last bout of pneumonia he will have this year or for that matter forever.

This week has been a very busy week, Isaiah, Ezekiel and Lily are going to a VBS at the church where Natalie is getting married. They are having a great time, I'm so glad that they have this opportunity, though it's been a bit challenging for me to get enough sleep, but I'm doing fine, just having to rely on God's supernatural strength this week. We have been planning a camping trip leaving this Friday for a week, once again I hope and pray that Luke will stay healthy enough for us to go. I will be staying up there with the kids after Gordy comes back to work this next week.

We have been looking at houses, it's been hard because I really don't like the idea of moving. It's not that I love my home, but it is my home and we've been comfortable in it for over 20 years now. We think we've found a home that we like but it needs some finishing work done on it. We are praying whether this one could be our home, it has some features that we absolutely will need in our new home. It has a master bedroom and small office/bonus room on the first floor which would be perfect for Luke's room. It also doesn't have any carpet in it right now, it only has tile and pergo floors in it, which would be good for Luke, Gordy and Isaiah's allergy problems. The yard is completely over grown with tall grass, blackberry bushes, weeds, rocks and would be a major project. Anyway I say all that to say we need prayer for wisdom in whether we should pursue it or not. Of course we would need to sale our home first and it needs some work before we could put it on the market, which means we would need the extra energy to get the things done to it to get it sold. I guess the reason I'm sharing this with y'all is so that you would be praying that God will direct us to His perfect home, in His perfect timing and that we will have his wisdom in knowing exactly what to do and when to do it.

Need to sign off I'm having a hard time staying awake and it will be another early morning tomorrow. I hope that you are enjoying your summer.

Be blessed,
Luke's Mommy Suz

Monday, July 13, 2009

Luke does have pnuemonia again, but he is already doing a bit better, thanks for the prayers!

After spending close to 5 hours in Urgent Care, Luke and I were finally sent home last night. He does have another pneumonia and his lungs look a bit worse than they did during his last pneumonia last month. The Dr. gave us the option of putting him in the Hospital to give him an IV antibiotic or giving him a shot of antibiotic then and then another shot today. We of course chose the shot, I think he would of chose the IV, but I'm thankful he let us chose. Luke did start to do much better last night and was almost completely off the oxygen all night long. The shot they gave him caused him great pain, he cried the whole time they were giving it to him, it just about broke my heart to hear him crying like that. I told Gordy that he cried like a "normal" child, it was the first time I've heard him cry like that in 5 long years.

I was blessed to get a good sleep last night, I needed it! I got up refreshed ready to take Isaiah, Ezekiel and Lily to a VBS at the church were Natalie is getting married. I took them to VBS, came home and got Luke ready for his Dr. appointment and then took him, got home just in time to start a load of laundry and take off again to pick up the kids from VBS. Now I'm off to meet a good friend for lunch.

Thank you for your prayers for Luke, I know they are working, but I also know that he is not completely better and still needs them coming in. Be blessed today!

Love in Christ,
Luke's Mommy Suzi

Sunday, July 12, 2009

I'm getting ready to take Luke into Urgent Care, he's got an extremely high fever. PLEASE PRAY!

I'm getting Luke ready to take into the Urgent Care, he keeps spiking really high fevers, like 103.6. He has been moaning all morning long, so I'm assuming he is in pain somewhere, he has also been coughing out some pretty thick yellow gunk. I'm thinking that he probably has pneumonia again. Please be praying that we see another miraculous touch from God and that we will be sent home with answers to what is wrong with Luke today.

I only got a few hours of sleep last night, I was woke up to the whole house shaking this morning, Gordy jumped up not knowing what was happening. We found out that we were having some very close thunder and lightening, this is very unusual for us so we were caught unaware, kind of scary for a few minutes. But thankfully nothing major. Even though I was unable to go to church today, God has been ministering to my heart as I have been listening to Michael W. Smith sing, I'm Deep In Love With YOU, his CD A New Hallelujah is awesome!

Love in Christ,
Luke's Mommy Suzi

I'm so thankful to know that when I am weak, God makes me strong!

Here's Luke flying a kite last month at the beach, he wasn't sure at first if he liked it and then he decided as you can tell by his smile that he loved it!

Luke could use your prayers tonight. He has been struggling with lots of extra secretions today and then earlier I noticed that he was struggling to catch his breath. I hooked him up to his oximeter and found out that his oxygen levels were low and his heart rate pretty high. I knew that I needed to check his temperature and sure enough his temp was up to 102.6. Gordy gave him some Ibuprofen and we stopped his night feeding, as he was gagging on his secretions that it was making him throw up. It is now 2:40 a.m. and he has not alarmed for quite some time again so I'm going to head off to bed in a few minutes and pray that I will get a few hours of sleep tonight.

Thank you so much for all your kind and encouraging words and prayers, I feel so loved! It's pretty humbling for me to admit to y'all that I've been struggling lately, I want to be strong all the time, but I realize that God say's in His Word that when I am weak then He is strong. Therefore I somehow need to find comfort in knowing that if I allow God to Hold me during those rough days, I in turn will be made stronger by His power.

Gordy and I have begun to look for houses this week, we both know that we need to move. My back has been hurting quite a bit lately and the bigger Luke gets the harder it is to have to carry him up the stairs into our home. We are praying that God will show us the perfect house that we need to have for our family. I'm not sure if the timing is right to be house shopping as we are in the middle of planning Natalie's wedding, which will be on September 26th. Please pray with us that we will have God's wisdom to know where and when will be the perfect time and place to move, thank you.

Good night all,

Luke's Mommy Suzi

Thursday, July 09, 2009

I Have So Many Tough Questions Right Now, With No Easy Answers!

I sit here tonight knowing that I should be in bed right now, I'm tired, discouraged and ready for a miracle from God. For some reason coming up on the 5th anniversary of Luke's accident has been extremely hard for me. I so desperately want Luke to be improving, I want to see him walk, but I would love to see him even move on his own again, I would absolutely love to hear him talk again, or hear him laugh, I would love to see him sit up, but would also just be glad to see him hold his head up without falling down, I would love to see his knee's bend again and for him to be able to sit without falling over all time. You get the picture, I don't need to go on.

I wish someone could tell me how to go on without the pain in my heart that I feel when I see other kids laughing and playing, when I see families going on bike rides together or for that matter going anywhere without having to take along all the equipment that Luke needs just to survive. Ok, I realize some of you out there are saying, get a grip Sue, you have a good life, you have a wonderful husband that works hard to supply all your families needs, plus extra's to make life easier, you have wonderful daughters that help you out on a daily basis, you have other family and friends that help whenever you need them to, you are able to go on trips and vacations and the list goes on and on . . . . Ya, you are right I'm so blessed, so why or why does my heart hurt so bad, why can't I just except what God has allowed in my life and count it all joy, as James says to do in the Bible???

We are at a cross road, we need to start making some hard and I mean really hard decisions about our future. We will need to move sometime soon, Luke gets more challenging to carry each day, I don't want to move, we are comfortable, period. We probably will need to start looking for a new van that is wheelchair accesible in the future. We have scheduled an appointment for a trial for a Baclafen pump, which would help Luke's horrible muscle tone issues and perhaps finally help him to be able to bend his legs again. I wonder at times if Luke is having seizures and if he should be put on a seizure medication, I personally don't want to go down that road, but do we need to??? We are in the midst of planning a wedding for Natalie and Josh, so many decisions and details to plan for, along with the thought of losing Natalie's help at home when she moves out is overwhelming at times, don't get me wrong, I'm so happy that she is getting married, but I will desperately miss her help, she has such a servant's heart. So many tough questions, no easy answers.

Bottom line I need your prayers and support, I'm sorry if that sounds selfish when I know so many other people also need them, but I also know that we serve a huge God. I know right now Pastor Bryan needs a miraculous touch from God as he is not doing so good right now during his journey through suffering with cancer, my friend Denise is going through chemotherapy right now and is suffering sickness and all the ill effects that it causes, Samuel Lockwood is back in the hospital down in Mexico, with whopping cough, while his parents are so lovingly and sacrificially giving of themselves to share the gospel, Noah has been in and out of the Hospital lately with some unknown infection that is just not going away, Mia almost died last week from pneumonia complications and needs our prayers right now as she is still in the PICU and the needs go on and on. . . I'm sure you could add your own urgent prayer request, I would be willing to pray with you if you do share it. Any words of wisdom or encouragement would be greatly appreciated and of course your prayers are desperately needed right now, thank you, thank you, thank you from the bottom of my heart thank you, I don't know where I'd be right now without you all.

Love in Christ,
Luke's Mommy Suzi

Monday, July 06, 2009

Camping + Appointments + 4th of July + Hiking = Some Busy, But Wonderful Days!

Life has been good lately, busy but good! We ended up having a good time camping, Luke stayed healthy and smiled all the time, he really does love to camp. Here are some of the pictures of our beach bonfire, the hot dogs may be sandy, but it's so much fun eating at the beach.

Last week was full of all kinds of appointments and other necessary items, I took Isaiah in to the Dr. since he has had a horrible runny nose for weeks, I'm pretty sure he has some allergies, he was prescribed all kinds of medications, they are helping, which is a huge relief for Isaiah. On Tuesday I took Luke for a HBOT treatment the first one he's had since April, I couldn't believe it had been that long. On the way home Luke and I went to Costco for a huge shopping trip, we were pretty much out of all the basics in our home, plus needed to get the ingredients for making Luke's formula. I dropped Luke off at home and then went to Trader Joe's and Fred Meyer for the rest of the ingredients. On Wednesday we made Luke's food, then I went in for a much needed massage and Chiropractor appointment, my back has been giving me some grief lately. Thursday I got up early and took Luke for another HBOT dive and then straight to his OT appointment, went home to get our swim suits, picked up some of Isaiah and Ezekiel's friends and took them to the lake for some R & R. They ended up staying that night for a sleep over out in the backyard in our tent, they had a blast.
Amy and I took them home on Saturday afternoon, then ran some errands. Gordy and I went out on a date, which was a wonderful evening, we are so spoiled to live in this beautiful state. Saturday was the 4th, we went to the Steilacoom Parade, just a small town parade, it was fun. After that we went to my sister Jill and her husband John's home for the day, the kids had fun swimming in their pool most of the day as it was a scorcher. That night Gordy took the kids to fireworks, while I stayed at home with Luke and Lily which were wiped out from all the festivities.

Sunday was church then a all church BBQ, we stayed for awhile but it was just too hot for Luke so I brought him home to be in our air conditioned room downstairs for the rest of the day. Today I went on a hike up to some beautiful waterfalls on Mt. Rainier. It was a hard hike up 4,000 feet, but so worth it, it was absolutely gorgeous!

Summer is already about 1/2 way over, hope you are finding time to enjoy yourself, go outside and enjoy God's wonderful nature, it's worth the effort!

Love in Christ,
Luke's Mommy Suzi