Wednesday, March 30, 2011

No Pump trial for Luke today. Please join with me in praying for Lance, Samuel, Jake, Juan and Annie's Family.

Just wanted y'all to know that I got a call yesterday telling me that we needed to reschedule Luke's Baclafen Pump trial, I guess they have too many people out right now suffering from the flu. The soonest they could reschedule Luke was in May, oh well I figure God is in control, I have to trust Him to direct us as we seek to get the care that Luke needs right now.

Please be praying for Lance today at noon, he is having surgery on his finger to fix his severly broken bone. Last week Amy and Lance went bowling and Lance hurt his finger, at first he thought it was just badly jammed, but after spending 4 hours in the ER he discovered he broke it so badly that they are going to have to put a small screw in it to fix it.

I would also like to ask for prayers for Isaiah, he has been dealing with some sores that just won't go away on his arms, I took him into the Dr. last week to find out he has an infection in hair folicles, he was literally covered with small sores all over his upper arms. After being on a heavy duty antibiotic this week they are still not clearing up, if they are not completely better by today I will be taking him back in once again to see what else we can do to get these sores taken care. I'm praying they will be gone when he wakes up tomorrow.

Just a few more prayer requests to mention: Samuel is going in today to get his baclafen pump removed after having it for the last 5+ years, pray that his surgery goes fine and that he will have a quick recovery. Please continue to keep Annie's family in your prayers, her memorial sevice is this Saturday. A little tiny premature baby named Jake was born last week weighing only 1 pound 10 ounces and while he is actually breathing on his own he needs lots of prayers to grow enough for his parents Liz and Bryan to take him home. And last but not least my good friend Yoli's husband Juan is coming home after being stationed in TX the last year, please pray that he will have a safe journey home as he travels by himself for 2 1/2 straight days to get here.

Thank you in advance for your prayers, they are POWERFUL!!!

Love in Christ,
Luke's Mommy Sue

Tuesday, March 29, 2011

Birthday's, birthday's, birthday's, seems like we are always celebrating someone's birthday: - )

Here is Luke getting ready to blow out the candles on his cake

Luke got a very soft blanket from Tia Yoli, he was feeling it and you can see from his facial expression loving it!
I thought this poster pretty much captures what Luke's life is all about, God has always been right by his side, no matter what he is going through.

Sorry the pictures didn't turn out better, we should have made sure we had a few good shots. Luke has been doing pretty good lately, his days are good, his nights still a challenge. I can not remember the last time we had a full night of sleep, I know that I've already shared that with you, but it still continues to be a challenge. Luke's appointment with his pulmonologist has been re-scheduled 3 times now; his Pulmonologist has been dealing with the death of his mom, please say a prayer that God will comfort Dr. R during this time of grieving the loss of his mom. I hope that when we do see him in two weeks that perhaps he will be able to find some answers to helping Luke do better at night.

Luke has a Baclafen pump trial set up for this Wednesday morning, we have to have him at the hospital at 6 am for the sedation process, he will then have Baclafen injected into his spinal cord. Baclafen is a muscle relaxant, he currently takes 20 milligrams 3 times a day, but we are not able to get enough into him to really loosen him up because it causes him to get very tired. The pump, which is a little bit smaller than a small can of tuna, is put into the body, it is filled with baclafen, a small catheter is put directly into the spine, which is then able to bypass the brain, making the Baclafen to do the job of helping to relax his muscle with out the negative side effects. We did this trial once before, not seeing much changes in his tone issues, the Dr. thinks that we could of doubled the dose they gave him last time, therefore we are going to try it one more time to see if the double dose does him more good. Please be praying for us to have wisdom in this whole process, the thought of putting a foreign object into Luke's body is unsettling to say the least but I know of so many kids who have a pump and it has made them so much more comfortable and able to bend better. Also be praying for safety for Luke while is sedated, it's always a bit scary to put him under for any amount of time.

On to some other news, this past weekend was filled with Birthday parties. We had a surprise birthday party for Lance, who is Amy's boyfriend on Saturday night. It was a lot of fun, very loud and crazy as we had 35 people over to help us celebrate. We had a taco feed, just to give you a small glimpse into how much food it took to feed all those people, we cooked up 9 pounds of taco meat, we still have leftovers, cut up two heads of lettuce, 4 cans of olives, a box of tomato's, had Lance's soon to be step mom make up some delicious homemade salsa, Yoli made a chocolate cake and a pineapple upside down cake add to that lots of ice cream and other ingredients, along with soda's for everyone and you have a whole lot of food.

Then on Sunday we celebrated my Mom's 75th Birthday, thankfully mom decided ahead of time that she wanted to go out to eat for her birthday. I am so blessed to have such a wonderful mom, she faithfully prays for Luke and our family, she is a wonderful example of a Godly woman, who sacrificially gives of her time and herself to bless our whole family.

I was asked to join the Family Advocacy Council at Mary Bridge Hospital, tonight was my first meeting. I'm excited to think that perhaps I can help make Mary Bridge a better hospital, though I already think the staff does a good job there. My prayer has always been for God to use me where he chooses to lead me. There have been many times that I have wondered why God has allowed Luke to be admitted into the Hospital so many times, I now realize that perhaps God was allowing us to go through those experiences so that we could perhaps help those that come behind us, at least I hope so.

Oh my goodness, another really long post, I really will try to keep my next post shorter.

Love in Christ,

Luke’s Mommy Sue

PS Please be sure to keep Annie’s family in your prayers, her memorial service will be held this Saturday.

Friday, March 25, 2011

Annie Sullivan went home to be with Jesus this morning, please keep her family in your prayers today

Annie went to be with Jesus this morning. I went up to visit Annie and her mom Jean on Wednesday evening at Children's Hospital in Seattle. When I got up there Annie was acting rather strange for herself, she had a seizure and then starting to get very agitated. I noticed her heart rate going up and asked Jean if perhaps she had a fever, sure enough when the nurse came into check her temp, she had a fever. After awhile her sweet brothers came to visit her, they were so kind and compassionate and concerned for her well being, they kept saying that she was shaking and seemed very upset. I left shortly after the Dr. came into check out her progress, knowing that the best thing I could do for their family at that time was keep praying, which I did the whole way home. I left with a heavy heart realizing all to well what kind of stress and pain Jean and her boys were going through watching Annie suffer that evening.

I found out this morning that Annie went home to be with Jesus, the thought of her in heaven running around with a new body, singing and talking without any effort brings joy to my heart. I also find that the thought of what Jean and her husband Bill along with their other 6 children are going through at this time is heartbreaking. Annie and Luke were only a few weeks apart in age and while though their stories and diagnoses were different they both shared many common things in their lives, the doctors, hospital stays, pain, brain injuries, their large families and their families' faith in God. Please keep Annie's family in your prayers as they mourn the loss of their precious daughter and sister. To read more about Annie's journey the last few years just go to the prayers links on the left of Luke's blog and click Pray for Annie.

Love in Christ,

Luke' s Mommy Sue

Thursday, March 24, 2011

Being woke up numerous times a night + Realizing we are NOT a "normal" family+ Walking faithfully = A Post that is way too long!

You would think that after living this life that we have been living for so many years that I would be used to the fact that I never really get a full night sleep. Being woke up numerous times a night by alarms is in fact extremely exhausting and it has been getting me down lately. The last few nights have been soooooo hard, I wake up out of a deep sleep after only sleeping a few hours to hear the oximeter alarms going off and then by the time I do jump out of bed realizing that it is Luke's alarm going off I get woke up all the way to a adrenaline rush by seeing the fact that he is in the low 70's or the 80's, for you that don't know that is dangerously low oxygen numbers. I always check his finger probe to be sure it's on correctly, if it is then I move him, check his oxygen tank to be sure it's not empty, suction him if he needs it and then make sure his cannula has not fallen out of his nose again. Usually his numbers come up rather quickly once I get all that done and then go fall back into bed, only to be woke up again and again and again to go through those same things over and over and over again, night after night after night, I think you get the picture.

This morning I woke up in tears, telling Gordy that something has to change in our lives getting no sleep is taking a toll on both of us. Somedays I'm able to go back to sleep for a few hours, but most days I have to get up of course to get Luke bathed and fed and get my day going. People ask me all the time why I don't take naps, for one thing I've never liked taking naps, my personality type just doesn't see them as something that is productive, also it's challenging to find the time in my days to take a nap. People also tell me all the time that I need to go to bed earlier, but I will be honest with you I would rather stay up late if Luke is having a hard night than to go to bed and be woke up time and time again. There is also the fear factor when he is doing really bad knowing that if I do go to sleep I may not wake up in time to help him because I won't hear his alarm. I'm thankful for the fact that I've always been a pretty energetic person, relying on God for His amazing strength and help is the only thing that has gotten me through these past years, but I will be honest it has taken a toll on my life and I would appreciate it if you would really start to specifically pray that Luke would start to breath better at night so that Gordy and I can get some really good sleep in our lives once again.

I've come to the realization this week, which many of you already know, that we are NOT a "normal" family. As much as I like to think of us being like other people out there we just aren't. That too has been a bit of a depressing thought for me, not that I want to be just like everyone else I never really have, but I do wish that our life could be just a bit easier at times. You see for many, many years now we have dreamed about taking a trip across America, I've always wanted to go to Washington DC. When Gordy first started working at REI 20+ years ago we knew that one of the perks working there was the fact that he would get a 4 week sabbatical once he was there for 15 years, 5 weeks at 20 years, every 5 years would add another week onto his sabbitcal. We began to think and dream about the time that we could take that sabbatical and go across America with the family. He hit 15 years 1 year after Luke's accident and we knew that we couldn't possibly take our family across America with Luke's special needs, but being the optimistic person that I normally am I thought that perhaps we could do it after waiting for 5 years. He was supposed to take his 20 year sabbitical last year but thankfully REI had mercy on him and let him delay it a year, because Luke had pneumonia almost 4 straight months and we knew that he just wasn't healthy enough to go at that time. Once again we thought perhaps we would be able to do it this year but after Luke's recent stay at the hospital it has come to our realization that Luke is just too fragile to take across America and he would be absolutely miserable traveling in a van for hours on end, day after day.

To be honest with you this realization has really knocked me for a loop, everytime I think about it I want to cry and then I think to myself Sue get real, there are people in Japan right now just trying not to starve to death or they are still not sure if their loved ones lived or died during the earthquake, there are people out there that have never taken a vacation and you have taken so many, there are people out there that are hungry and would love to just eat 3 meals a day, there are people out there that are out of work and desperately needing a job, there are people out there that are homeless, there are people out there that have just lost a loved one, there are people out there that . . . . I know that with time I will be okay with not taking this trip, it just hurts right now.

At the beginning of the year I decided that I was going to start walking again, I made a new year's resolution of walking everyday this year, I quickly realized that was just a bit over zealous so I said that I would walk at least 5 days a week, so far I have averaged about 6 days a week, walking at least 3 to 5 miles a day. Walking has been really good for me, for many reasons of course one thing it has helped me to lose 20 pounds so far, which is about a third of the weight I want to lose, it has also helped me to get in better shape, it helps me to clear my mind and to spend sometime listening to worship music and spend some time in prayer, it has given me something to look forward to on those rare days that it is beautiful outside. For so many years I have blamed being "fat" on the fact that I have so much stress in my life I can't take the time to do this for myself, also I've blamed it on the fact that my thyroid is messed up, but I've decided enough excuses I'm sick and tired of being uncomfortable with the way that I look and feel and I'm going to do something about it. With God's help I'm going to keep walking and perhaps one day be a whole lot healthier.

I realize this post is mostly about my "sad" life, sorry if I have sounded like I'm feeling sorry for myself, perhaps I was:-/ I try not to dwell on the fact that our life is so challenging, but since this is my journal of Luke's journey since his accident I needed to share this if nothing else but for myself, because you see I don't plan on staying this way for long. I know without a shadow of a doubt that I will overcome this feeling of discouragement and weariness, because I know my God is faithful and He has promised to never leave me or forsake me, He has told me that if ask Him to carry my burdens He will, He has also promised me that I can do ALL things through Christ who gives me strength, He has also promised me that if I wait upon Him, He will renew my strength, I will mount up with wings as eagles, I will run and not grow weary, I walk and not faint, if I can only learn how to wait upon Him and trust Him to be my all and all.

Before I sign off I do want to let you know how Luke is doing. I did end up taking him into Urgent Care on Sunday, the Dr. there thought he had pneumonia, but I'm not sure because his x-rays are always cloudy looking. He is doing better, tonight being the best night he's had in a long time Praise God. I promise to sit down again soon and post some pictures from Luke's birthday party and give you some more details about all Luke's appointments he has scheduled for next week.

Love in Christ,
Luke's Mommy Sue

PS PLEASE pray for Annie, her blog is posted to the right, she has been in the hospital for about a month and desperately needs a touch from Jesus today.

Sunday, March 20, 2011

Your prayers were answered Gordy and I had a wonderful time away: - ) But once again Luke is in need of some prayers, he's sick again.

Multnomah Falls, Oregon

All week I've been wanting to sit down and let y'all know about the wonderful, relaxing time that Gordy and I had together on our get away, but to be honest I couldn't seem to find the energy to do it. God must of known we really needed the sleep and relaxation because we've come home to many sleepless nights once again. Yep, you heard right Luke is not doing so well once again. I was so excited to get some uninterrupted nights of sleep but I found the first two nights my body is so used to be woken up many times a night that I would still wake up about every one to two hours. Finally the 3rd night away I slept all the way through and the last night was the most restful sleep I've had in a long time.

Here is the first falls we stopped at we mistakingly thought this was Multnomah Falls, not even close to the beauty and height of the real thing.This is Gordy and I after our 2 mile round trip up to the top of the falls to overlook them, it was a tough hike at times but so worth it, it was so beautiful and magnificent.
Here I am by the river at the top before the falls, I love rivers it's one of the most relaxing thing in the world to sit by them and enjoy the music they make.
This Seagull adopted our deck at our Hotel in Lincoln City, we decided to name him Charlie

One of my many walks on the freezing cold, windy beach. Can you see the sand that was blown onto my face? It was so windy I thought it would knock me over.
This was a new beach we discovered on our way home. It's called Oswald Beach you have to walk about a mile to get to it and boy is it worth the walk it was gorgeous.
When we were down at the beach we saw a huge black cloud coming our way, it started raining as we left the beach, this is a cool picture with the raindrops on the rocks there. By the time we got back to our car we were both wet, but thankful we got there when we did because the downpour began once we left the parking lot. What great memories!

Please be praying for Luke he had a very rough night and so far today has been battling a high heart rate, is very congested coughing out greenish/yellowish gunk, along with being on extra oxygen today. I'm debating whether to take him into Urgent Care, I don't think he has pneumonia, hasn't had a high enough fever for that it's only been a low grade fever.

Love in Christ,
Luke's Mommy Sue

Monday, March 14, 2011

Luke is doing okay, not great, please continue to keep him in your prayers

Thank you for your prayers:- ) Gordy and I are having a wonderful relaxing time. Yesterday we climbed 2 plus miles to get to the top of Multnomah Falls and back down, it was a challenging hike but definitely worth the effort. Wish I could upload a picture from my phone but I don't know how to, oh well I'll do it when we get home. Currently we are staying at a hotel right on the beach in Lincoln City, OR. The view from our room is amazing! I'm getting ready to go for a long walk on the beach, looking forward to some prayer time during my walk, I always feel so close to God when I'm at the ocean.

The kids are doing good at home, of course they miss us and we miss them but we know we will definitely be better parents after this time away. Luke is doing okay he was on more oxygen than I would like to see last night at Yoli's house, but not enough to warrant coming home a day early. Please continue to keep him in your prayers, thank you.

Love in Christ,
Luke's Mommy Sue

Saturday, March 12, 2011

Would you please keep our family in your prayers the next few days?

Would you please keep our family in your prayers this weekend?? Gordy and I are going away for a few nights of much needed sleep and relaxation. PLEASE pray for Luke to stay healthy, he's been having some rough days and nights lately, we leave feeling a bit apprehensive about leaving him, but we know that we are in desperate need of some sleep, sleepless nights do catch up with a person after awhile. Also be praying for the rest of the kids to stay healthy and be good while we are gone. Natalie and Josh are staying with the kids all day Saturday and Sunday, Luke is going to Tia Yoli's house on Sunday night and then Amy is filling in the rest of the time while we are gone.

Thank you in advance for your prayers, they are so powerful!

Love in Christ,
Luke's Mommy Sue

Thursday, March 10, 2011

Happy 8th Birthday Luke, we are so blessed to have you in our lives!!

Luke at Christmas
Luke giving flowers to his PT and OT last year at the Stars Program

Mother's Day out for a walk with all the kids

Luke hanging out at Cannon Beach last September

Luke and Lily at the park on July 4th

Just hanging out all dressed up with no place to go
Luke in the Hyperbaric Chamber during one of the
dives he was blessed with from the HUGS foundation
Delivering Christmas cookies and sing carols on Christmas Eve

Getting ready to leave the Dr.'s office the day before he ended up in the hospital

Getting a breathing treatment during his hospital stay

Monday, March 07, 2011

Imitate those who through faith and patience inherit what has been promised Hebrew 6:12

I'm continually amazed at how God can allow a book such as The Streams in the Dessert, to minister to me time and time again. God is so faithful to remind me of His promises, which are written all through out the Bible. Today I want to share with you the reading from March 4th.

The biblical heroes of faith call to us from the heights they have won, encouraging us that what man once did, man can do again. They remind us not only of the necessity of faith but also of the patience required for faith's work to be perfected. May we fear attempting to remove ourselves from the hands of our heavenly Guide, or missing even one lesson of His loving discipline due to our discouragement or doubt.

An old village blacksmith once said, "there is only one thing I fear: being thrown onto the scrap heap. You see, in order to strengthen a piece of steel, I must first temper it. I heat it, hammer it, and then quickly plunge it into a bucket of cold water. Very soon I know whether it will accept the tempering process or simply fall to pieces. If, after one or two test, I see it will not allow itself to be tempered, I throw it onto the scrap heap, only to later sell it to the junkman for a few cents per pound.

I realize the Lord tests me in the same way: through fire, water, and heavy blows of His hammer. If I am unwilling to withstand the test, or prove to be unfit for His tempering process, I am afraid He may throw me onto the scrap heap."

When fire in your life is the hottest, stand still, for "later on . . . it produces a harvest" (Heb. 12:11) of blessings. Then we will be able to say with Job, "When he has tested me, I will come forth as gold: (Job 23:10). selected

Sainthood finds its source in suffering. Remember, it requires eleven tons of pressure on a piano's strings for it to be tuned. And God will tune you to perfect harmony with heaven's theme if you will withstand the strain.

Things that hurt and things that mar
Shape the man for perfect praise;
Shock and strain and ruin are
Friendlier than the smiling days.

After reading this entry in this precious book that has ministered to my heart so many times, I was once again reminded that God allows us to go through the fire so that we can come out stronger and to remind us that He has a plan for our lives. The time spent in the Hospital with Luke was unbearably hard at times. I kept asking God what his purpose in taking us back there was? But was unable to hear Him clearly during those extremely stressful days, I just knew that I needed to trust Him alone to bring Luke through another life threatening trial. I am so thankful that God's presence is so strong and that His peace and joy can sustain us through out our most challenging days and times.

Luke is doing so much better, he is getting more verbal all the time, I know that he calls out to us in his own way when he wants one of us to come to him, either to help him or just to be with him. Lately Lily has been expressing to me daily that she wants Luke to walk and talk, I keep reminding her that is exactly what we are praying for daily and believing with all our hearts it will happen soon.

Luke turns 8 on Thursday, March 10th, it's so hard to believe he is getting so old, but you can tell by looking at him he is definitely not that little boy he once was. His birthday is usually a hard time for me, as I so desperately want to keep him small enough to be able to hold him and carry him, but on the other hand I'm happy that he is turning another year older, one more year to be thankful to God for allowing Luke to still be with us here on earth.

Love in Christ,
Luke's Mommy Sue

PS Would you please pray for Annie today, her blog site is posted over to the left in the Prayer links, she has spent the last two weeks in the hospital and her body is currently rejecting any food they give her, she is in desperate need of a miracle today. Also keep Caleb in your prayers, he suffered from a severe seizure two weeks ago and his poor little body still keeps tremoring almost constantly.