Thank you for your prayers, Natalie and Josh's wedding was just perfect

I've been wanting to sit down all week long to let you know that Natalie and Josh's wedding went perfect. They looked gorgeous and so did the rest of the family. Luke had a good day and did fine in the wedding. Thank you so much for your prayers the ceremony was amazing and the day although very busy was just wonderful!

Mr. & Mrs. Joshua Thomure

We put our last guest on the plane today. We had a very busy, but extremely fun week. Most days we had at least 3 to 18 extra people in our home at all times. I took some of Josh's family to Mt. Rainier on Thursday and it was an absolutely beautiful day to show off "Our Mountain" as we lovingly refer to it. Friday Gordy took a huge group up to Seattle to check out Pike's Place Market and to get some fresh fish for lunch that day. All in all everything went smoothly and wonderfully.

We are still adjusting to the fact that Natalie is married, I think it will take some time to really realize that she is not coming back home. She lived in this home for all her 20 years of life. I am so proud of the young lady that Natalie has turned out to be, even though some think her too young to be married, we know that she is definitely ready and mature enough for marriage. I remember asking her one day what she was looking forward to most about getting married and she replied that she looked forward to putting together and decorating her home. She is a wonderful cook, a proficient house cleaner, very talented piano player and teacher, a servant and most of all a beautiful wife that adores her husband. Gordy and I could not be more proud of her if we tried. We are also so very happy about her choice of husband, we know he adores her and will be a great and Godly husband.

To change the subject a bit I just wanted to let you know that I'm back to reality of life on Friday when I take Luke into the hospital for his Baclafen pump trial. We will need to be at the hospital at 7 a.m. and will be spending close to 8 hours there. Please be praying that I will have a peace about taking him to the hospital, I will be honest it terrifies me to think about all the germs and people we will be in contact with. Also please pray that we will have a definite answer to whether or not we should put Luke through another surgery, if it will truly help him with his extremely bad muscle tone issues it will definitely be worth it, but it is not something that I want to do as he has already had way to many surgeries for a little guy of six.

Thank you once again for your prayers,
Luke's Mommy Suzi

I'm waiting on the Lord for my strength today:}

So here I sit at my computer wishing like anything I could get up and do some of the much needed chores I need to get done today. My back is out of whack again, I look like a crooked old lady. We are in wedding plans up to our neck, Natalie and Josh's wedding is this Saturday. Tomorrow my wonderful friend Mary and her two daughters are coming for the wedding, I had planned to take them to the fair after picking them up from the airport. Hoping and praying that I will be able to do that with my back the way it is right now. The next day Josh's family begin to come and will continue to come in until the wedding. I am in desperate need of a miraculous touch from Jesus for my back.

Here is Luke flying his kite, he did a great job holding onto it!

I realize its been awhile since I've blogged. We've been very busy, we went camping to the Oregon coast at the end of August and had to come home a day early because Luke was sick. I was pretty sure he had pneumonia, but Praise God the Dr. said it was not pneumonia, only some virus he caught. I gave him a few more days to get better and after 5 days of fever, high heart rate and extra oxygen needs we began an antibiotic. He has been doing better this week. I have the biggest prayer request that I think I've ever had, would you please be praying that Luke will be healthy on the day of the wedding, he along with Ezekiel are going to be the ring bearers. Zeke will push Luke down the aisle in his wheelchair with Luke holding the rings on his lap. It would be so wonderful if Luke was then able to stay in for the remainder of the ceremony. My prayer is that he will be breathing wonderful that day and that my sister will not have to take him out.

Here's some honesty for y'all, as you know this blog is my journal of our journey that began 5 long, anguishing years ago, I have been struggling with some extremely deep depression this year. I'm pretty sure it began during the beginning of the year when Luke was so sick and I would sit by his bed each evening hoping and praying that he would get through the night to see another day. Something about hitting the 5th anniversary of his drowning accident has been excruciatingly hard. Then knowing that Natalie is getting married, which I'm so very happy about, though at the same time knowing that some of my help is leaving me, is so hard.

I know, that I know that I can do all things through Christ who strengthens me, but many days lately I feel like I'm losing my hope. There is a verse in the Bible that say's hope deferred makes the heart sick, my heart feels sick. Don't worry I know that I will not stay this way for long, I can't it goes against my very nature, I know that God will bring me up and out of this pit, He's done it before and He will do it again. I often feel guilty for feeling this way because I know that I have so much to be thankful for and because I know that if I truly gave this to God He would change it. Why am I telling you all of this, why share my deepest hurts with people out there in blogland, why am I being so honest with you all??? My deepest desire is that by sharing this with you out there that once again you will pray, but that is not the only reason, I know without a shadow of a doubt this is a season I need to get through and once I do I will be stronger, able to pray for others going through the same feelings with empathy and compassion. I also know that God takes us through fire to refine us and draw us closer to Himself and knowing this gives me strength and hope knowing that I can pray with faith for those that are on this same journey.

I leave you today with the scripture I have been quoting a lot lately: Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord. Psalm 27:14 I'm waiting on the Lord for my strength. Hope you are too:}

Love in Christ,
Luke's Mommy Suzi

Luke's journey in pictures these last 5 years

Here's Luke a month before his accident, he was a very busy healthy little boy

Here he is with his trache, getting ready to leave the hospital after his 29 day stay



Luke's 2nd Birthday and his last picture with a trache



Here's Luke at one of his many PT appointments and his 3rd Birthday



Luke in his stander and on one of his many camping trips, notice all the equipment needed to take Luke camping



Luke during one of his many times of sickness on lots of oxygen, he has no clothes on because of his high fever & on his first hay ride



Luke's 4th Birthday and in the Torchlight Parade in Seattle




Luke as a lion at our Church's Harvest Party and him in Seattle one day



At the Children's Therapy Unit with Santa and with his favorite PT Sara at the Star's talent show



Luke at the Oregon Science Museum playing in the sand and at the Thunderbird show



First day of PE at the YMCA and at the dentist




Here's Luke getting his face painted at the CTU Christmas party and his 6th Birthday



Here is Luke at a beach bonfire in Oregon and on a hike at Mt. Rainier



Here he is arm wrestling with his OT Eric and hanging out on the beach during our church campout


Here is Luke today on our walk across the Narrows Bridge

As you can see by the pictures Luke has lead a very full and good life these past five years. Has it always been easy, no way, has it always been pain free, no way, has it always been full of smiles, no way. Have we always believed that God is able to heal Luke, YES, have we always had to lean on Jesus for our strength, YES, do we still believe that Luke will walk and talk again one day, YES! We are thankful that we didn't take the Dr.'s advice in the PICU right after his accident, when he told us to take Luke home and let him die in our arms, that Dr. knew the hardships and trying times that we would have with Luke's brain injury. God knew better, He knew we would grow closer to Him than we thought possible, God knew that He would never leave us for a single second, God knew that He would have to give us the strength to get through the many hard days, God knew that He would supply all the money we would need pay all Luke's many medical bills, God knew that He would bring faithful prayer warriors to stand by our sides and not give up praying for Luke's healing and our family, God knew that we would need healing in our family and He faithfully healed us in our desperate moments, GOD KNEW and we trusted Him.

Thank you for your faithful prayers and support. I've said this numerous times in the past but it can't be said enough that without your faithfulness in keeping our family in your prayers this journey we've been on for these past 5 years would have been nearly impossible to get through. May God richly bless each and every one of you.

Love you so much,
Luke's Mommy Suzi

PS We would love to hear from y'all out there, would you be willing to share your favorite memory from these past 5 years? We would love to hear it!

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