Luke's doing better, though still has a little bit of pneumonia

Thank you for your prayers last weekend. Luke began to get better on Saturday, which made me so happy, but I was bummed that Gordy had stayed home with him, when I would of rather had him with me at the conference. I'm so glad I was able to go, it was good to remind myself of all the reasons that we chose to homeschool our children. I don't go to those conferences to learn how to homeschool I go to get encouraged and energized to continue on. Amy is also doing much better, though she is still in a lot of pain. Today was a hard day for her as she received her first bill from the Ambulance company, without insurance it's going to take along time to pay it off. I wonder why the cost of a short 15 minute ride in the back of a fancy truck costs over $1100.00 something is desperately wrong with our medical situation in our country right now, I won't go into that discussion right now it would take up pages of this blog.

I took Luke into see his Pulmonologist on Monday, it was an hard appointment for me. After the Dr. listened to Luke's lungs for a few minutes he decided that Luke probably still has a bit of pneumonia in his left lung, Luke was put on another antibiotic and given a short dose of steroids to get over it, hopefully and prayerfully once and for all. It was also decided that we should keep him on a prolonged does of Pulmincort to help get the air in his lungs moving better. Tonight for the first time in so long he has not alarmed once for oxygen needs. I asked his Dr. if there are any other options of way to get Luke to stay pneumonia free and he did mention the T word, but that is only a last option. My heart sunk to the bottom of my shoes when I heard that word mentioned again. Can any of you guess what the T word is??

I'm so glad last week is over. It was a very challenging week to say the least, both Amy and Natalie were at camp and silly me thought it would be fun for the kids to go to VBS. They did have fun, but it was a bit stressful for us in the morning getting them out the door by 8:45. Friday was probably the most stressful day of the week, I was asked to share our story at a Starlight Fundraiser Golf tournament up in Carnation, which was over an hour drive away. Once we got there it went pretty good, they raised $5,000 for Starlight, hurrah! On our way home we got a call from Natalie saying that they were taking Amy to the Hospital in an ambulance, she had fallen off a Motor bike and hurt her shoulder and back. We began to pray immediately and thankfully found out she didn't break anything. We decided it would be best if we went to pick her up at camp, so after being in the van for over an hour, we got home and thankfully my sister was able to watch the kids, while Gordy and I took off to Sequim which was about 2 hours away. Needless to say we spent at least 6 hours in the van that day.

Natalie had her bridal shower on Monday night, it turned out wonderful! There were over 30 ladies there, my sister Jill had it at her home and Cindy helped with the games. Natalie was showered with some wonderful gifts. It's so hard to believe she getting married next month. We are all in for some huge changes, I'm thankful that God has assured me that He will not allow me to go through more than I can handle, lately I've felt I'm close to the end of my rope.

This weekend we are going on a all church camping trip, it should be fun. Please pray that Luke will stay healthy and that the weather will be nice. Next week is going to be overwhelmingly busy to say the least. Silly me planned a "missions trip" to our church, two full days of fixing it up. I'm excited to say that we will have over 40 people who are willing to help out, it will be quite a project, I still need to do the shopping for paint and the supplies for the yard work. I have a good friend coming into to town next week, hoping to go out to lunch with her. I've been asked to do another interview on the radio for the Starlight Foundation in Seattle. We have to make Luke's food on Monday. We are going to be doing Natalie's wedding invitations. The son of a friend of mine is having surgery next week. It's Yoli's birthday on Wednesday and the list goes on and on and on . . . .

Love in Christ,
Luke's Mommy Suzi

Our family could use some prayers today!

Luke and Amy could use some prayers today. Luke is sick, we started him on a new medication for his lungs earlier in the week and they said it could have some side effects, so we're not sure if that is what we are dealing with or if he's just caught the crud again. We had to drive out to pick up Amy at camp yesterday, she was riding a dirt bike and feel off, she hurt her shoulder really bad. Thankfully nothing was broken, it could of been much worse.

We were supposed to go to a homeschool conference this weekend, the first one Gordy was going to attend in many years. But alas, I'm heading up that way by myself again. I would just skip it but I need to look for some curriculum for the boys for next year.

Would really appreciate some prayers for Amy to have no more pain today and for Luke to make a quick recovery. Thank you so much.

Love in Christ,
Luke's Mommy Suzi

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

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

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

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 Suzi

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

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

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

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

We've been on the Luke Roller Coaster Ride again this past week! Hoping to jump off it today as we go camping for the week

I'm going to try to keep this short as Luke is yelling at me to come get him out of his bed! Luke has been sick off and on all week long, I got a call from Gordy last Monday saying that he had a very rough night on Sunday night, but as the day progressed he seemed to get better. It was so hard being in GA hearing that he was not feeling well as there was nothing I could do being so far away. He continued to have some good days and bad days all week long it really was a huge roller coaster ride. I finally took him to the Dr. yesterday and after listening to Luke's lungs he sent us over to radiology for an x-ray. The Dr. didn't think Luke had pneumonia after looking at the x-ray, but then after being home for about 2 hours we got a call saying the Radiologist thought that he did have a bit of pneumonia so we should start the antibiotic we had picked up earlier.

You see we have been trying to leave for a camping trip since Thursday but we had some problems with the trailer refrigerator so we were unable to take off that day, I debated about taking Luke into the Urgent care that night because I knew something just wasn't right with him. Needless to say very early Friday morning he began to alarm with a high heart rate, I took his temp and it was at 102, I knew at that time I would be calling the Dr.'s office as soon as I got up to make an appointment. Thankfully they double booked the Dr. and got him in at 10:20. Gordy and I decided that he should just go ahead and take the rest of the kids to leave and set up camp, that I would follow behind if Luke was doing well enough. After getting home from the Dr.'s office yesterday I just felt like we should wait one more day before we leave to be sure that Luke would be healthy enough to make it through the week. It was a very difficult day and decision as I was completely torn in two as I so wanted to be with the family in Oregon, but knew I needed to stay home with Luke, reminding me once again of this teeter toter our family rides on each and every day.

I do want to tell you about the conference in GA, but I will have to wait for another day as I need to get Lukie up, bathed, fed and ready for the day so that we can take off her ASAP to meet up with the family today. Would you please be praying for Luke to stay healthy and for our family to have a non-stressful time this upcoming week. I really feel like we need a week full of laughter and fun to help get rid of some of the stress that we've been dealing with these past few months that have been full of Luke sickness and wedding plans.

God bless y'all,
Luke's Mommy Suzi

Here's the latest news!

I'm sitting in the Portland, OR airport right now waiting for my flight to leave for Atlanta, GA. Not a lot of people including some in my family didn't know I was leaving today, that's because it all came about rather quickly. I had heard about a conference for Mother's with brain injured children happening in Atlanta about 2 months ago, but never thought I would be able to go until I received an e-mail from another mom who said that they were trying to get people free flights and free hotel rooms. I began checking into it and found out that the flights were only for connecting states, so I started looking for free mileage flights and found one available. I'm looking forward to meeting with other mom's and hearing their stories of what they have found works best for their children and just sitting with them and being able to relate to what they are talking about since we are all traveling the "same" but I'm sure different road. Please be praying for safety as I travel and for those at home.

Luke is doing better the last few days, for awhile I wasn't sure if we were going to be able to go another day without his one muscle relaxant medication, in fact the Dr. prescribed it again in a smaller amount hoping that it will be easier on him that way, then we hope to wean him off both if we are able to.He definitely has gotten a lot more verbal lately and is so much more alert now that he is not drugged all the time, it's such a fine line between being drugged and finding what will help with his extreme muscle tone issues.

Last night we all went to the last YMCA Homeschool Choir Concert, our wonderful choir director Sue is finally moving on to other things. It's so hard to have something that you've been involved in for 11 years end but as I told her last night there really is never a good time to stop something you love and enjoy so much. Luke seemed to really enjoy listening to the kids sing and stayed awake until about 10:00 p.m. which is of course way past his bed time.

Natalie's wedding plans are coming right along, there are so many details, but I think we've got the biggest of details finalized now we just need to get the million little details done. Amy has been keeping busy, she is finishing up her school year at the church and planning out the summer of activities and classes for the children's ministries at our church. Isaiah, Ezekiel and Lily finished up their school this week after our final YMCA Homeschool PE picnic yesterday. Daniel's web design business is taking off and he having to quit the job he had for a short time to work full time for his business again, it really is a blessing from God that it's doing so well. Gordy is working hard at REI, but is finding time to go golfing a few times a week. We are all looking forward to going camping at the end of next week, it will be so nice to have some family time.

I would love to hear how y'all are doing? What summer plans do you have? And of course if you have any prayer needs I will promise to pray for them if you share them with me.

Love in Christ,
Luke's Mommy Suzi

A Peek Into Our Crazy Week!

We took another ride on Luke's roller coaster ride this past week. The only way that I get through weeks like last week is by hanging on tight to my Precious Father's BIG hand!

Monday was a very busy day, it began at the Dentist with myself, Isaiah, Ezekiel and Lily getting our teeth cleaned. Natalie brought Luke to me to take from there to his Pulmonologist appointment. It was a follow up appointment after Luke got his tonsils out, his Dr. said that Luke is doing pretty good, he is basically past the most dangerous part of his life since his airway is getting bigger all the time. Unless Luke comes down with a horrible pneumonia he should probably live to be 20 to 30 years old. Wow, what a huge statement to make, of course he did mention that he realizes that only God can know for sure, he is a Christian man and knows that God is the only one who can ultimately decide that for sure.

Luke getting a breathing treatment at the Pulmonologist Office

Tuesday started out with lots of laundry and then I called my sister Cindy to see how it was going moving her son Joseph and his wife Gina into their new home. After talking to her I realized that they needed help so I jumped into my van and drove 2 hours down to Vancouver, WA to help clean their apartment and take a few loads of stuff over to their new home. I got home that night around midnight, finally got to bed to be woke up by Gordy who had scratched his eye and was in horrible pain all night long.

Wednesday I thought for sure this would be a day that I could stay home and get caught up on some major details around the home, but not to be. I ended up taking Gordy to the eye Dr., he found out that he scratched his cornea and would not be able to put his contacts back in for at least 4 to 5 days. Without his contacts he is legally blind, therefore is of course unable to drive. After getting home I only had a few minutes before Natalie and I had to leave for our appointment with the wedding coordinator at the church that they've decided to get married at. The date has been set it is going to be September 26th at 1:00 p.m. We've gotten a lot of the details done, but we still have a lot to do.

Thursday was another day of appointments for Luke, he saw his OT at noon and then he had an appointment to see his rehab Dr. at 1:30. We decided that since the muscle relaxant medication that Luke has been on has not worked the way we would of liked, we are going to wean him off of it. It was causing him to want to sleep a lot more and looked drugged all the time, he was also losing his head control and just wasn't seeming like our Luke boy. We finally decided to schedule a date for a Bacalafen pump trial. This was a road I didn't want to go down, but alas Luke's muscle tone issues have gotten worse and we need to figure out how we can help him the best way that we can.

Luke getting adjustments to his wheelchair/stroller at the CTU

Friday began with school, got the laundry going, a few chores and then I took off to visit a friend of mine in the Hospital. Her daughter Emily, who needs lots of prayers right now has been in and out of the hospital for the last few weeks, she is having feeding problems, her body is not letting her accept her food without much pain and throwing up. Please be praying for Emily to get better and for Michelle her mom to have her strength and joy renewed. If you want to keep up to date about Emily's prayer needs you can check out her blog, The Tender Scribe, to the left under blogger friends. On my way home from the Hospital I locked my keys into my van while filling up with gas at Costco, had to wait for 30 minutes for Amy to come with an extra key. Shortly after I got home Amy and Natalie took off for a Youth Leaders retreat.

Saturday was the day I was sure to finally get caught up on the laundry, which I did get it all washed and dried but still have not finished folding and putting it all away yet, oh well it's a losing battle. Later that afternoon we took the kids to the Hands on Museum and then over to my parent's home so that we could take a walk with them on the wonderful trail near their home.

Sunday was a good day, it began by being quite late for church, Gordy got called to work but at least me and the kids were able to go. After church I fed the kids and then Gordy and I were able to get away for a little bit of time for lunch and a little shopping. Later in the day Amy and I went down to see Daniel, she had never been to his home and it's been way too long since I had been there. We went for a beautiful walk with him and his girl friend Sara, up, up, up, the mountain behind his home, it was breathtakingly beautiful.

Here we are on our walk up "Daniel's Mountain"

Monday was a great day, I woke up to sunshine and thought what a perfect day for a field trip to the Mountain. I loaded up the van with the kids and we took off to Mt. Rainier. It was such a wonderful trip there, so beautiful. We took a short little hike around one of the many trials, we all had a great time, though Luke was not very happy on the way home. He has been much more vocal and seems to be in lots of discomfort since we've cut out one of his muscle relaxant medications. The Dr. told us we could just stop it, but I think that we probably should of weaned him off it. It has been so hard to hear him crying and see the tears in his eyes, if he is not doing better by tomorrow I will be calling his Dr. to be sure that he told me the correct information about weaning him.

Here we are at Mt. Rainier

Wow, didn't mean to write a book, sometimes I get carried away, sorry about that. I know that if I would just sit down more often these posts wouldn't get so long. Hope you enjoyed your peek into our week!

Love in Christ,
Luke's Mommy Suzi

I had to say good bye twice today

Lily and Karlos found a caterpillar and Luke got to hold it!

Today was a challenging day, it began by Luke's alarms going off, I thought perhaps he was getting sick, but thankfully he is doing just fine tonight. I know that I've haven't updated the blog in a while it's been a very busy time here at the Searles home. My brother and his wife came for a long over due visit from Denmark, we hadn't seen them for almost 5 years. We've had a wonderful time these past few weeks, filled with lots of family times together. They left this evening to go back home, my brother has lived in Denmark for 28 years and really is very Danish now, which is a good thing since he is married to a wonderful Danish Lady. We will definitely miss them and hope they won't wait another 5 years to return again.

Here is the whole family, minus my nephew Jesse and his wife Rebecca, plus my Uncle and Auntie and their grandson Greg and of our course the Rodriguez family which we've adopted into our family, minus Juan who was in Kuwait, but got home on Sunday. Whew I thinks that's all!

Here is the original 7, my parents, Cindy, Ray, Jill, myself and Lori

Here we are with our wonderful spouses!

Here is our ever expanding family, Daniel with his girlfriend Sara & Natalie with her fiance Josh

On the way home from the airport, I had to shop for ingredients to make Luke's food, yep it's that time again, I began his food process tonight cooking the meat for his formula. While my parents and I were at Costco getting the ingredients we received a call saying a very close friend of our family was in the process of dying and if we wanted to see him before he was gone we would have to head over the Hospital. We went in to say good bye, it was very hard to say the least. Ken Carter is an amazing Godly man, he was in a diving accident about 30 years ago that left him a paraplegic, he spent the rest of his life either in a wheelchair or a bed. Ken never got bitter about his life, he chose to love and serve God the only way he could, he would spend hours praying for people and his prayers were powerful. It was so hard saying our good-byes, he could not talk as he is hooked up to a ventilator, but he could still mouth words and the last memory I'll have of Ken is saying, I'll see you in heaven one day, then he began to sing a song, though I'm not sure just exactly what he was singing. He was almost unrecognizable as his body is very swollen, his heart is shutting down, but his face was radiant with the love of Jesus. I know that soon Ken will be rejoicing up in heaven running again, free from his horrible crippled body. Luke and our family has lost two of our biggest prayer warriors in the past few months, first my cousin Karlon and now Ken, both would spend time praying for Luke on a regular basis and I know that their prayers made a huge difference in our lives, which I'm extremely grateful for and am going to miss greatly.

Well I really do need to sign off, tomorrow will be a very busy day, but then what day isn't??

Love in Christ,
Luke's Mommy Suzi

Luke loves his Auntie Lori!

Our Sweet Daughter Natalie is Marrying the Man of Her Dreams Joshua Thomure!

Here is the news you've all been waiting for: Natalie Sue Searles our sweet daughter is marrying Joshua Lee Thomure, we are not sure of the day and time yet, they are hoping sometime either at the end of September or early October. Wow, I don't know if I'm ready for this, but I guess I don't have a choice. I'm filled with mixed emotions, I'm so excited for Natalie and Joshua, they've loved each other for a long time and now the time is right for them to move forward. At the same time, it will be a huge adjustment for our family to lose Natalie's amazing unwavering help and support in the home. Change is good, but ever so hard.

Joshua has already been around so much these past 4 years that he is already part of the family, all the children are so excited to get a new brother. Joshua was born in Missouri, he came here in 2004 days before Luke's accident. He was in the same ministerial program that Daniel was in down in Centralia, WA, he has a amazing passion for GOD, he is the youth pastor at our church, he loves Natalie's little brothers and sister and they adore him. In fact Lily asked who she would marry now that Josh is marrying Natalie, I think in her little mind she had already planned to marry him one day, a little young wouldn't you say? He has always been very kind and compassionate with Luke, always gives him hugs and kisses and has been one of Luke's hugest prayer warrior. We are truly blessed to have him join our family officially.

We had a very busy day today, church this morning, followed by a celebration dinner at the Spaghetti Factory, ran to Costco, came home to drop off things and kids, left right away to go to the airport to pick up my brother and his wife, who are visiting from Denmark, went to my sister Jills home for dinner, came home put the kids to bed, got the laundry going, caught up on some computer stuff, finally posting here and then I'm off to bed. Looking forward to a busy, but hopefully fun week with family get togethers and outings. Luke had a good day, though the heat of the day was kind of hard on him, I'm so thankful that he is doing better.

Love in Christ,
Luke's Mommy Suzi

Luke is doing so much better, except for the complaining which I hopes stops today!

Hey thanks for the prayers, Luke is doing so much better, Praise God. Now I hope he will stop yelling today, I think his muscle tone has kicked into high gear and he has been in a lot of pain. I had started him on a new medication, but the Dr. felt we should stop it until his sickness was done since one of the side effects can be respiratory difficulties. I hope when we begin it again today we won't see any ill side effects.

We are looking forward to a very busy day, a huge secret will be revealed today, I'll let you know later what it is. Also my brother and his wife are coming for a visit today from Denmark, haven't seen them since right before Luke's accident in 2004. I'm exhausted but happy, we got the house completely cleaned inside and out, the bills paid, the check book balanced and our new front door and garage doors ordered. I love productive days! Now we can enjoy the week ahead filled with lots of family activities.

Love in Christ,
Luke's Mommy Suzi

Don't forget to check back later for some very BIG news!

High Fevers, Low Oxygen, sound familiar, ya Luke needs prayers again!

Luke could use some prayers once again. He came down with something last night, ya we pulled another sleepless night. He has been running a very high fever and is on lots of oxygen. I took him to the Dr. this afternoon and he was amazed at how good Luke's lungs sounded, of course while we were in his office he was doing great, it wasn't until we came home again did he have another set back. Anyway all this to say we would really appreciate some prayers coming our way, thank you.

Love in Christ,
Luke's Mommy Suzi

Finally a post!

Where to begin??? So much has happened since my last post. Let me begin by saying that Luke has been doing good. He has been healthy our only concern right now is the fact that his muscle tone has gotten worse lately and yet we have him on more Baclafen then ever before. We begin a new medication tonight called Dantrolene, we hope that combined with the Baclafen will help loosen up his way too tight muscles. Bending him lately has been a challenge, though we know that when I go away he always tends to get tight, he continues to stay that way even though I've been home over a week now. The Dr. told us that it would take a few weeks to see if there will be any positive changes with this new medication. If this one doesn't work we may begin thinking about a Baclafen pump, though I really don't want to go down that road.

The rest of family is doing good. Amy just got back from her 10 day missions trip to the Domincan Republic, she went with a team from our church to minister to the people there. They were kept busy daily with lots of meetings and manual labor. I had a wonderful time on my cruise to "no where", I hope to go on another cruise again someday and this time take will take Gordy with me. It took me a few days to get my land legs back, I felt dizzy for about 3 days, but praise God that is all gone now. The day before Mother's Day I blessed my Mom by taking her on a wonderful day full of exploration to some new beaches that we've never been to before and new area's of our Rain Forest here in WA state. We really do live in a amazingly beautiful place, y'all should come visit us if you ever get a chance.

I hope that you all had a wonderful Mother's Day this year. It was not a good day for me after getting home from my wonderful exploration day with my Mom and friend Yoli, I got very sick. I went to bed that night with horrible chills and fevers, the next day was spent entirely in bed, though I did get up for a few minutes to follow Ezekiel's home made map that lead me to his beautiful home made Mother's Day card. I spent the next day in bed also, I'm feeling better now, though still feel a bit weak and am not at 100% yet. It's weird but I believe I've had more health issues than Luke lately, my thyroid has been acting up. Today I found out that I have Hashimoto's Disease, it basically means I have a thyroid who can't decide if it wants to be hyper or hypo, not much fun that is for sure. It seems to be something that is in my genes, my mom suffered from the same thing until God healed her about 10 years ago, therefore I know that God can heal me also and that is what I'm praying for.

I realize that this post is long enough and I don't even have any pictures in it to share, that will have to come soon. But I need to share a few prayer requests with my fellow prayer partners: Noah is very, very sick and desperately needs a touch from God, Valerie Grace also needs a touch from Jesus right now, check out their prayer links for more information and please keep Luke in your prayers that his precious little body would loosen up soon. Of course it goes without saying that if any of you ever need any prayer or know of someone who does please let us know so that we can pray for you, faith is increased by numbers!

Love in Christ,
Luke's Mommy Suzi

Y'all have overwhelmed by your kindness, THANK YOU!

I would like to begin by saying that I'm overwhelmed by your amazing responses to my last blog post. I don't feel worthy of all your praise, I'm just a Mom trying to live my life according to what I feel God wants me to do. Thank you for all your continued prayers, they are so amazing and powerful.

Luke is doing a bit better. I do believe that he is finally starting to swallow a little bit again, this is a huge answer to prayer. We are not having to suction him nearly anywhere the amount that we were having to do last week. Nights have been so much better, I only had to suction him twice last night and he has only been on a little bit of oxygen at night, this is a huge answer to prayer.

My wonderful husband has blessed me by sending me on a 3 day cruise with some good friends for my birthday. I will fly down to LA on April 28th and catch the cruise on the 30th, which is my birthday. It is a repositioning cruise which means it goes from LA to Vancouver BC with no port stops along the way. My only goals for the this vacation are to relax, sleep, play games, read, eat and have fun, I'm praying for no stress that week. I have been having some health problems lately and most of them are related to the fact that I've been under too much stress, therefore have been told by numerous people that I need to take a break from the stress. Please be praying that Luke is healthy, that is the only way that I know to have a completely stress free week.

Once again thank you for your amazing support and prayers, they mean more than I can ever say!

Love in Christ,
Luke's Mommy Suzi