A Week Full of EXTREMES

Wow, what a week of Extreme's: Extreme Joy, Extreme sadness, Extreme hope, Extreme hopelessness, Extreme goodness, Extreme heartache, Extreme anticipation, Extreme disappointment, Extreme stress, Extreme blessings. I'm ready to have this extreme week over.

I began the week with much anticipation and anxiety of what Luke's new Dr. would say, wondering if she would have the much needed answers or solutions on ways that we could get Luke's leg's bending again and help for his extreme muscle tone issues and left her office with more questions than I did answers. It was not the Dr.'s fault for the many questions and feeling of extreme desperation and despair when I left the office, it was because in Luke's case there seems to be no answers. The Dr. did explain that because of Luke's extreme damage to his brain during his near drowning accident that kids like him don't really have many answers to ways to help with the struggles they often experience with their extreme muscle tone issues. The solution she gave was continue to increase his baclofen, which is a muscle relaxant until we see him begin to really relax or until he becomes so drugged that we don't like the reactions we are seeing him have to the drug. Often kids like Luke need too much baclofen to make them relax and even though it really does help with the muscle issues, it's not good for the cognitive connections we are trying so hard to get him to make. Our other option is a baclofen pump, which is not always the best choice either, it creates a whole net set of challenges.

I left the office with a deep sadness and depression that day, I still can barely talk about it without tearing up. You see we continue to travel on this journey holding on tightly to hope and at times it seems that the hope we hold onto so tightly becomes almost impossible to hold on to. If you know me at all you must know that I don't like crying, I never have, it has always been embarrassing and non productive to me. I would rather come up with solutions and see the good side of situations rather then the impossible sides, I consider myself to be a pretty positive person most times. But this week I've felt an utter hopelessness that I haven't felt, well ever, crying more this week than I have in years. I still don't know if we should go back to this new Dr. or the Dr. Luke had before. You see the reason I was trying a new Dr. is because I didn't believe that there were no answers to Luke's tone management as his other Dr. was telling me.

On top of the stress of the difficult choices we now need to make for Luke, we have had the extreme stress of having our home on the market along with the stresses of making an offer on our new home. That's where the joy and goodness come into play for the week. The offer we made on the new home was accepted and we are going forward with hopes of living there one day. Now all we need to do is sell our home and that is huge, but not too huge for GOD.

I celebrated my birthday yesterday, it was a good day, but even on the best of days the sadness of hopelessness still lingers in the back of my mind. I'm praying that God will bring me out of the pit of hopelessness soon. I know, beyond doubt that God has a answer for Luke's muscle tone issues, I know that He could reach down His healing Hand right now and bend his knee's, I know that it's easy for Him to make a new brain with new connections, that is what I have to tell myself everyday, I have to believe it without seeing it, because that is what God desires. He desire's my trust and hope when I don't feel like it, when I can't see it and when I feel like nothing will ever change. I've had a week of crying now it's on to find some new answers, even if those answers are God's still voice in my head saying "trust ME, Sue, I've never failed you before and I'm not going to start failing you now."

Don't feel sorry for me, I don't want pity, but I would love your prayers. Prayers for Luke's legs to bend, for Luke's brain to heal, for Luke's muscle tone issues to get better, for direction in finding answers to impossible questions, for our house to sale, for God to lift off this dark cloud that I'm under, for me continue to trust Him even when I don't see any answers concerning Luke's health, for Luke's pneumonia and lung issues to heal and of course for strength to continue on the journey I never asked to go on. THANK YOU.

Love in Christ,
Luke's Mommy Suzi

We had a offer made on our home yesterday, now we need prayer for wisdom and favor today, please pray:]

We got a offer on our home yesterday, less than one week after we put it up for sale. We prayed that we would sale it quickly, but this is almost too quick, we are not sure where we are going to live. Would you please pray that we have wisdom and favor today as we negotiate the price for our home, the people offered way less than what we were hoping for and they also want the house by May 15th. Also pray that we will know exactly where we are supposed to go, we've been praying about a home for many month's but it was taken off the market a few months ago, now we need wisdom and favor for getting into this house quickly if that is what God wants us to do.

Thank you for your prayers,
Luke's Mommy Suzi

After talking about it for years we've finally put our house up for sale

We did it, we finally did it, we finished getting our home ready to put up for sale. We've talked about doing this for years and we've finally done it. Tomorrow morning the sign will be put up in front of the house and it will be listed out on the internet. My parents bought this home brand new in 1978 and then Gordy and I bought it from them in 1987, we have so many good memories here and some sad ones too. I doubt that we would of ever thought about moving if it hadn't been for Luke's special needs. We've been comfortable here and have always loved our property and tree's. It's been a good home for our family and we will miss it. We have a place that we are looking into buying but nothing is for sure yet, it's hard not knowing exactly where we are going, but we feel we are doing what we are supposed to be doing in selling this home.

After typing that Luke was doing better he began to get sick again on Sunday night. I e-mailed the Dr. to let him know what was going on with Luke, he was running a fever, on oxygen and had a high heart rate. His pediatrician called Luke's Pulmonologist and it was decided to start Luke on another antibiotic to see if this one will finally get rid of the what has been brewing in his lungs for the past 3 months. He is doing better once again, we continue to ride on the Luke Roller Coaster ride, not a fun ride at all:[

I decided to take Luke to see Matt the Rolfer today. I had recently weaned him off his Dantrolene, which is one of the muscle relaxants that he's been on for a long time and I was curious to know what Matt thought of his muscle tone. It was exciting to hear Matt say that Luke's muscle tone was better than it's ever been, Matt actually said that the last time I took Luke to see him, so that means that Luke is doing better and better all the time. It was kind of rough weaning him off this med, it was the second time that we had tried to do this and I was worried last week when Luke seemed to be in more pain than usual, I think it was because he is becoming more and more cognitive of his muscles and body, which is exciting to see, but also painful to listen to him crying. I am happy to say that he is doing so much better, no more crying this week. I'm taking Luke to a new Rehab Dr. at the end of the month and it will be interesting to hear what she has to say about Luke's muscle tone issues and her suggestions on ways to help him.

Will you please pray that our home will sell quickly and that we will know exactly where we are supposed to move? We are walking in faith truly believing that we are being obedient to what God is calling us to do, but it is kind of scary not knowing for sure where He will take us. That is what faith is all about, believing without seeing.

Love in Christ,
Luke's Mommy Suzi

Luke's doing better this week, Praise God!

Here's a picture of my precious children on Easter Sunday. We had a very nice Easter, we began it at church and then we went to my sister Jill's and her husband John's home for Easter dinner, it was a very good day and dinner.

Luke has been doing so much better this week, which is wonderful. I thought that Luke needed to see a Pulmonologist with hopes of getting some suggestions for ways to get rid of this pneumonia and atalectis he's been dealing with for the past 3 months. With his regular Pulmonologist out of town we went to see a different Dr. he gave us a prescription for steroids and put Luke on Zithromax three times a week for six weeks. The steroids were just what Luke needed, I really do believe it is why Luke is doing so much better this week. I'm not so sure I want to put Luke on an antibiotic for 6 weeks, I don't want him to get immuned to taking an antibiotic. I guess I wonder if he would need to take one again in the near future if his body will need a super strong antibiotic that we won't be able to give him at home, therefore putting him into the hospital. I'm trying not to worry about this and am praying that God will give us the peace and answer to know exactly what we need to do.

We've had a busy week. Isaiah turned 11 on the Wednesday the 7th, he had a few friends over to spend the night last night, all them very nice boys they had a great time. We got the yard done, it is officially ready for putting the house up for sale, I believe it will be one of the selling points of our house, our backyard is very kid friendly. Only a few more things to do and I think we are going to have our Realtor put it on the market this week. We still aren't sure where we are going, but have a few idea's of places we would like to live if they will work out. I am praying that we will sell our home quickly, the thought of keeping our house clean and having people walk through it all the time is extremely stressful to me.

Love in Christ,
Luke's Mommy Suzi

PS Which picture do you like best the one on top or bottom? I had a hard time choosing which one to post.

Finally some pictures from our Cruise:]

My cousin Kim sent me a e-mail yesterday asking me when I was going to put up some pictures from our cruise. I had a few extra minutes in my day today so I thought even though I know these pictures are over a month old, I would post them for those that wanted to see them here. This post has nothing to do with Luke, just his old parents:]

Here I am hanging out our balcony on the way out of the San Pedro Harbor.

Gordy on the boat taxi out to Lands End in Cabo San Lucas


Here we are on our over looking the bay of Cabo San Lucas

Here is our ship, notice the difference in the color of the ocean, it's amazing how many shades of blue it really is.

Here I am standing in front of the catcus they call Mother in Law Pillows, doesn't look very comfortable to me!

They had a mini golf course on board, notice how windy it was, my hair is flying!

Can you see Gordy at the end of this HUGE golf club?

Here we are all dressed up for one of the formal nights

The Dinning Room was three stories high with this beautiful chandelier in the middle of it

Here I am trying L'Escargot, not too bad for a slimy slug, the food was absolutely delicious!
This picture does not do justice to the absolutely amazing Ice Show we saw aboard the ship, the ice skaters where mainly from Russia, they were phenomenal!

We had room service twice a day, I could get used to that! They would leave little creatures made out towels around the room, our room steward was so friendly and efficient.

Here is a picture taken from the elevator down the main corridor of the ship. Our ship was 14 stories high, it was so beautiful and elegant.

Here is a picture of the place where we ate Gordy's birthday lunch in Mazatlan

Here I am sitting on a spit out in front of the Restaurant, have I said how beautiful it was there?

Here is Gordy eating his special birthday dinner, it was prime rib and it was delicious!

Here is one of the many beautiful sunsets we saw

Here we are with our waiter, he was from Bulgaria, he was very friendly and funny.

The Jungle in Puetro Vallarta, was beautiful, we saw wild banana, orange, coconut, guava, and date trees and some beautiful flowers, it was quite a hike up and down some pretty steep hills and over some little creeks. It definitely was one the highlights of the trip.

Here I am doing one of my favorite things, sitting by a river, I took off my shoes and soaked my feet in the cool water, it was so refreshing

If you look closely you will see a Zip Line going through the tree's, we could of gone Zip lining but it didn't appeal to us.

Here is the view from the place we ate our lunch that day.

One of the many beautiful churches we saw

Believe it or not this is a baby crib hammock. I guess up in the Jungle they put their babies in these hammocks to keep them off the ground so that no spiders or snakes will harm them.

Here I am sitting out on our balcony the last day of the cruise, Natalie taught me how to crochet doilies right before we left and I finished one while we were gone, it was so relaxing to just sit there and know that there was nothing else for me to be doing that day.

This trip was a gift from God! We came home relaxed and refreshed after some wonderful days and nights of rest and fun. I hope you enjoyed the pictures!

Love in Christ,
Luke's Mommy Suzi

Rewind: Luke has pnuemonia again, Rewind: Luke has pneumonia again, Rewind: Luke has pneumonia again

We had another one of those rough starts to our day today. I woke up knowing that I would need to get Luke into the Dr. today, he had a fever again last night and woke up with one this morning. So I called as soon as the office opened and sure enough they said to bring Luke in at 9:20. Needless to say once I heard the time I was running trying to get myself and Luke ready in time, I'm so thankful that Amy was home this morning to help or I would of not made it in time.

Luke's Pediatrician is out of town for the week and so we had to go see his partner who we've seen a few times in the past. I'm always a bit apprehensive about taking Luke to anyone but his regular Dr. realizing that they don't know Luke's "norm" as his Dr. does. After getting an x-ray done it was decided that Luke still has Atalectis and pneumonia, I was very disappointed, but not really surprised. He prescribed an antibiotic and sent us on our way home. We are praying about whether we should take him into see his Pulmonologist as this is the third straight month that we are dealing with the exact same issue.

After I got home from the Dr. I got a few chores done and then Amy assured me that she would keep a close eye on Luke if I still wanted to go to my regular Bible Study at a friends house. Have I told y'all lately how much I appreciate my Amy girl?? Well I do!! After the Bible Study I went to get my hair cut, it's been out of control lately. I then ran to Costco for a few needed items. I had planned to go out with a good friend tonight for dinner and after calling home to see how Luke was doing and finding out that his heartrate was soaring once again and his temp was spiking I told Amy that I would come home, but no once again she assured me that she could handle it and she knew how much I was looking forward to going out with my friend, she knew I had already had to cancel two times going out with her because of Luke issues before. I'm so glad I was able to go we had a great time, we talked for about 3 hours straight, what a gift from God!

Luke seems to be doing better tonight, Praise God. When I got home his numbers looked good, I'm hoping that he is already starting to turn around for the good.

Would you please be praying with Gordy and I that Luke will be healed once and for all from this pneumonia that seems to be plaguing him? Also for wisdom on whether we should get him into see his Pulmonologist. Thank you in advance for your prayers, they are powerful!!

Love in Christ,
Luke's Mommy Suzi

Searles Home Weekly Review

I began this entry last Sunday morning, here it is finished a little late.

Here I am sitting at home with Luke another Sunday morning. It seems like I only get to church a few times a month lately. Last night Luke was having a rough night, he was alarming off and on all night long with oxygen problems. You would think after so many years we would be getting used to this constant alarms and sleepless nights. But no, it has it's many effects in our lives, we're often tired, we are often discouraged, we are over weight a known fact in people who do not get enough sleep, we do keep going, there is no other choice, but some days it's just plain old hard.

It's been a long time since I've shared with you a typical, not so typical week in the life of the Searles Family, so here it goes.

Sunday: The family went to church while I stayed home with Luke who had a rough night. When Gordy got home I took off with my girls, Amy, Natalie and Lily, we went out to eat and then did some shopping, we had a great day.

Monday: Gordy took the day off to work around the house. We began the day with getting the kids ready for the day, did some home schooling with them, then got to work. That day we completely weeded all of the area's of beauty bark in our yard. Gordy went to pick up a load of beauty bark and we spread it, it was a huge job. We also got the lawn mowed, some bushes trimmed, cleaned off the deck and the top of the little roof over the sand box in the back yard. A very productive day.

Tuesday: Did school with the kids, got them ready to go to the YMCA, I went to my friend Laurie's house we are doing a book study on a excellent book about getting rid of the toxic thoughts in our brains. After that I went for a walk with Yoli and then we did some shopping, got the boys each a new shirt for Easter and found some dresses for Amy and my Mom's birthday gift.

Wednesday: Gordy took the day off, to work around the home again. That day Daniel and Sarah came over to help, they were able to tear down our neighbors fence, with her permission, it was falling into our yard after completely rotting through, Gordy also fixed the back fence to make it look presentable and tore down our old tree house. It was my Mom's birthday so my sisters and I took her out to lunch, it was a lovely time. On the way home from my Mom's house I picked up some paint. When I got home I changed and got busy, I painted around the front door, we had replaced our front door last year but we never finished painting around it, I also painted around our new garage doors, it all looks so nice.

Thursday: I got up and got the kids ready for the day, started them in their school work with Amy helping them that day. I took off to get my nails done, they looked horrible, ran a few errands, then took off for a drive over the mountain. You see earlier in the week I got a call from my friend Tiffany, she is mom of Abbie, who had a near drowning accident 3 months before Luke. Anyways they were in the area and she called to say that Abbie had been admitted into Children's Hospital up in Seattle with a nasty bug, thinking it was related to the home made formula they had made just before they left. I told her that I had some extra formula and I would love to take it over to them. It was a great day I listened to a book in the van on the way over and then I had a wonderful walk and talk with Tiffany. I love spending time with her, she is a wealth of information and so it is so encouraging spending time with someone who knows exactly what you go through on a daily basis. On my way home I stopped by Costco to pick up some items for our Ladies Tea at our church on Saturday.

Friday: Gordy took one last day off from work to do some projects around the house. After getting the kids schooling done we got to work, Gordy finished replacing a closet door that had been wrecked, I worked on getting my kitchen plant window cleaned out and my wonderful parents came over and helped clean our floors. I worked until about 4 and then I went to the Chiropractor, my back has been giving me a bit of grief lately. After my appointment I ran to Walmart to pick up a few more things for the Ladies Tea, then went by a friends home to pick up some plate stackers and while I was there I wrecked our van. I wedged myself between a pole and a rock wall, it was not a happy time. I went straight from their to our church to help set up for the Ladies Tea, I had volunteered to set up a table with my own china and decorations. Thanks to Amy's help we pulled it off. After they I came home to some laundry, putting the kids to bed, etc . . .

Saturday morning: I woke up later than I wanted to I was exhausted after another night of Luke's alarms and just too much to do all week. I was a bit stressed because I still needed to make 3 dozen chicken salad croissants and cut up fruit for the tea. With Amy's help we got it all done and I was only about 10 minutes late to help finish getting everything set up for the tea. The Ladies Tea went off great, a good time was had by all. After the tea I came home and got busy once again, my kitchen looked like a tornado had gone through it because I hadn't finished putting away all the stuff from the plant window that I had cleaned the day before, we had dishes to wash from the tea and prep before the tea, needless to say it was a mess. Once I got that done I got the laundry going once again after cleaning up the kids, they decided that they wanted to play in the mud in the back yard so I had to give Lily a second bath of the day and the boys took a shower then we collected their muddy clothes and added them to the mountain of laundry. That night Gordy and I went on a much needed date, to dinner and Lowe's for more home repairs, sounds romantic, huh?

And were back to Sunday again.

Love in Christ,
Luke's Mommy Suzi

Here's some pictures of Luke at the Star's Program and from his Birthday Party

Here is Luke waiting to present some flowers to his wonderful, dedicated, hard working therapists after the Stars Program on Saturday.

First to Miss Sara his PT, then to Miss Joyce his OT

Luke had a great birthday celebration after the program

We weren't sure if Luke would be able to be in the program as he was running a low grade fever in the morning, but after some prayers and Ibruprofen we decided to go ahead and let him be in the program. It was so amazing to see all the kids perform what they could do. We video taped his part of the program, but for some reason the blog is not letting me put this up, I will continue to try and hopefully will get it up soon.

Luke has been needing lots of extra oxygen the last few days, please keep him in your prayers to get over whatever is causing this problem. Thank you.

Love in Christ,
Luke's Mommy Suzi

Happy 7th Birthday Luke

Luke has been touched once again by God's healing power and he is super, duper better!

Just wanted to let y'all know that Luke made a speedy recovery from the pneumonia. I know that it was from the prayers, because even the Dr. was amazed at his quick recovery. He went from being on constant oxygen to being off it in a matter of one night. The Dr. asked what he had done to recovery so quickly, like had he coughed up a massive amount of stuff or what, the only answer I could give him was that we believe in the power of prayer and once again God has touched and healed Luke.

Tomorrow is Luke's 7th birthday, it's so hard to believe he is going to be that old. Where has the time flown too?? Birthday's are a challenging time for me to say the least, praying that this year it will be a little easier. We are celebrating his birthday this Saturday after Luke is in the the Stars Program through the Children's Therapy Unit. It is amazing program where the kids who get therapy at the CTU shine for the day, it is heart touching to see these children who would never get a chance to shine on stage have their day in the limelight. Luke will be opening the show with him touching a switch to say, "Luke would like to welcome you today to the CTU Stars program," I'm hope that he will be able to do what is required of him in the time allotted for him to do it. If you are interested in coming to see the show just let me know I will give you directions and then you are also invited to join us afterward for his birthday party, we would love to see y'all.

Love in Christ,
Luke's Mommy Suzi

Luke has pnuemonia again and he could really use your prayers

Luke has pneumonia again:/ I'm extremely thankful that he stayed healthy for the most part while were gone on our cruise. Natalie, Amy and Yoli all said that he did good except for the fact that he was really "junky" most days. Sunday night was a gift from God, Luke had a great night, but by the next day I knew he was just not his normal self, by Monday night he was doing horrible. There were a few times that I was terrified, he kept desatting and then had an episode that was absolutely horrible, not sure what that was about, but think it might of been a seizure because of his oxygen deprivation. If he ever has another one of those episodes I will definitely get that checked into.

I took him into his pediatrician yesterday and after x-rays it was determined that Luke still has pneumonia and his atelectasis, which is his collapsed lung is not doing any better. It really is amazing and God's goodness that he didn't have more problems while we were gone. He got another painful shot of antibiotics and was put on a strong antibiotic, had some blood work done, needless to say it was a 2+ hour Dr. visit. Last night he did a little better but is still not doing good at all. All that to say is that Luke could use some prayers today and so could I, sleep deprivation is not a good thing. Too bad I couldn't take some the extra hours of sleep that I got on the cruise and use them now:/

Love in Christ,
Luke's Mommy Suzi

PS I will try really hard to get some pictures up from our cruise, it was absolutely amazing, a true gift from GOD!

Luke is about 97% better:] Gordy & I leave tonight for our cruise, with God's peace and joy, knowing God is in control!

Well the day has finally arrived, in about 8 short hours Gordy and I will be taking off to the airport to catch our plane. I'm so thankful to report that Luke is doing so much better, he is still on a wee bit of oxygen at night and I'm okay with that, though I'm hoping tonight he will be back to needing none. Isaiah is doing better also, I ended up taking him and Lily to the Dr. on Thursday and I'm so glad I did, he had a very infected ear, along with his raw nose and throat, Lily just had a cough which is gone, praise God. The antibiotics seem to be doing their job and Isaiah is making a good recovery. I'm a thankful that I can now get all the last minute details finished without the worry or wondering if I should be going.

I've gotten so much accomplished this week, not sure why I think I need to get so many extra things done before I go on vacation, but I'm sure I'll be glad when I get home that I did. The one thing that I did not get done was putting up our Valentine's Day card and letter for all y'all to see. I might still do that even though I know it will be so very late. It's the thought that counts, I hope!

We sure would appreciate y'all holding up our children in prayer while we are gone. On the one hand it is so hard to leave them, but on the other hand I know that Gordy and I need this break from the constant stresses that we live under. Just thinking about a full week of uninterrupted sleep is the most exciting part of this cruise:] Along with all the other exciting stuff we will be doing!

Wish I had time to post some pictures, I will make it a priority when I get home. Sure do appreciate all your prayers, thank you in advance:}

Love ya,
Luke's Mommy Suzi

Luke's definitely has his voice back and his beautiful smiles:}

Luke is feeling so much better, he's definitely not at 100% yet, but he has his voice back again and his smiles. His Pediatrician told me yesterday that he doesn't think Luke has pneumonia, but he definitely has a collapsed lung, I can't remember the medical name of it. The best way for Luke to get better is to cough him often and get the air moving in his lungs as often as we can. We are going to continue the two antibiotics that he is on until they are done. Luke is blessed to have a Dr. that will listen to me and know that I know just exactly when he needs to be seen and when he doesn't, it sure does save some trips into the Dr.'s office.

Last night was so much better, no alarms until early this morning. I went to bed early I was extremely exhausted and couldn't stay awake another second. I have so much to do to get ready to leave on Saturday. I'm praying that God will heal all my children, Isaiah is not feeling so well today, his allergies are acting up and Lily still has a bit of a cough, the only way that I will be confident about going on the cruise is if I can leave a house full of healthy children.

My list of THINGS TO DO, is extremely long maybe if I don't take time to sleep for the rest of the week I might be able to get them all done before Saturday night when we are supposed to leave. Mind you I'm trying not to complain, but it's just overwhelming!

Love in Christ,
Luke's Mommy Suzi

PS If you came looking for our Valentine's Day Family Newsletter, I am still working on it and hope it will be posted within a day or two, thank you for your patience.

This was a very hard day, full of lots of disappointments and stress, not the "Too Much Fun Day" that I had planned:[

This was one of those days that I hope never have to relive again as long as I live. Don't get me wrong I'm so happy that we are home and not in the hospital tonight, but even with the joy of being at home it was still a very rough and stressful day. After I helped get the kids ready and their snack packed for the day, Gordy left with them to have their "Too much Fun Day." I then got ready to take Luke into Urgent Care. He was having such a rough morning and I knew that we needed to get there ASAP. When I arrived at Urgent Care I realized that Luke's wheelchair stroller was not in the back of the van. There was no way that I could take him in without help so I turned the van around and went back home for his chair. When I left I didn't know that the van was almost empty so I had to stop for gas on the way home, so that I wouldn't run out on our way back to Urgent Care. Not a pleasant way to start a very long day at the Urgent Care.

When we finally were seen by the admitting nurse I could tell she was very concerned for Luke, as was I by that time. When she hooked him up and his oxygen numbers where in the 80's and stayed there even after I turned up his oxygen to 3 liters. When she looked at his fingernails they were a beautiful blue color, not the color you want to see on any person. Needless to say she got Luke back to a room ASAP. We had two nurses immediately in there very concerned about Luke's oxygen deprivation, they hooked him up to their oxygen and turned it up to 5 liters, I knew that Luke would not do well with it being turned up that high, it just blows too hard into his nose to really do him any good. When the Dr. came in a few minutes later I told him that Luke would probably do better if we turned it down a bit and he agreed to try, it did help him a little bit.

After the Dr. listened to Luke's lungs he decided that Luke should go up for a x-ray to be sure he didn't have pneumonia. We waited another hour for the radiologist to call him back, because it was a holiday there was only one person working today. After his x-ray we got back down to his room and once again Luke's oxygen numbers were plummeting way to low and his heart rate was soaring. The Dr. came in shortly with the news that Luke had pneumonia in his lower right lung and his lower left lung had collapsed, not the news I was looking for. He took another look at Luke and thought that Luke should probably go over to the Hospital, I asked him if we could try a mask on Luke for awhile first to see if that would help his oxygen numbers and praise God after putting on the mask and getting some prayers going he began to make a good turn around. They gave him two very painful shots of antibiotics and a prescription for one more antibiotic to take home and told me to call Luke's pediatrician in the morning with an update on how Luke is doing for further instructions of what to do next.

What a difference 24 hours make! Last night at this time I was so stressed out knowing that Luke would need to go into to Urgent Care, tonight Luke is doing soooo much better, he is on blow by and his heart rate is almost back to normal. My prayer right now is that I will wake up to a healthy boy, that is what in faith I'm believing is going to happen, in Jesus Precious Name, Amen.

Now I'm exhausted staying up way to late trying to get caught up on some necessary tasks that just won't wait another day. I got my laundry finished and folded, now all I need to do is get it put away tomorrow. Amy helped me get the birthday presents wrapped, as mentioned in my last post, Natalie turned 21 today, her birthday party is tomorrow night. My dad turns 80 on Wednesday and we are celebrating Gordy's 50th on Friday night. Lots of details still need to be done for those parties and I am working on getting them all accomplished:]

I keep believing that Luke is going to be back to 100% by Saturday, that's the day we are supposed to be leaving for our cruise. Trusting in God is so very hard some days, but I know that the reward if I can truly do it will be so wonderful!

Love in Christ,
Luke's Mommy Suzi

HUGE change of plans for me today, instead of taking Luke with the kids on a too much fun day, I will be taking him into Urgent Care, BUMMER!

Yesterday Luke began to get sicker and sicker until last night became one of his marathon horrible nights. I was up until 4 something suctioning him and responding to alarms. At one time his fever was up to 104, his heart rate up in the 180's and he was up to 2 liters of oxygen for awhile.

I was so hoping and praying that we could bypass the Luke major sickness ride before our trip this time. It seems to be that every single time I've planned on going out of town Luke has gotten extremely sick and this time seems to be no different. It's only 5 more days until Gordy and I are supposed to leave.

PLEASE, PLEASE, PLEASE pray with us that the Lord reaches down and touches Luke one more time, TODAY. I know that God is able to do this for us and I'm trusting in Him to once again reach out with His Healing Hand and take away this horrible sinus infection for good. In my mind I wonder why God continues to test me in this area of trusting Him with Luke and not doubt He is able to keep him healthy and whole while going away from him. I guess I have not passed this time of testing yet, I hope and pray that this time I will "get it" and it will be the last time that we will have to go down this path. I'm thankful the Lord that has brought so many of you by our sides to hold up our arms of faith when we become too weak to hold them up by ourselves. THANK YOU!!

Love in Christ,
Luke's Mommy Suzi

We are happy to report Luke does not have pneumonia, only a nasty sinus infection and we are praying that will go away today!

I did take Luke in yesterday to his Pediatrician and after listening to his lungs, the Dr. assured me that Luke did not have pneumonia PRAISE GOD! But he did say that the lymph nodes on the back of Luke throat look enlarged and from the sound of his symptoms he thought that Luke has a sinus infection. Which make perfect sense to me since all the gunk is settling in the back of his throat causing him to need to be suctioned constantly to keep it clear. He prescribed some Amoxicillin to help clear up the infection, normally I wouldn't be a proponent of putting Luke on a antibiotic, but we really need to get him completely healthy before next weekend. He seems to be doing a little better this morning, we are believing for a complete and total healing today:}

Amy is feeling so much better, thank you for your prayers. But now it seems like the evil cough has attacked Lily, she was woke up numerous times last night coughing like crazy, now I'm wondering if I should take her into the Dr. today or wait a few days to see if it continues. More questions, I'm praying for more wisdom and answers from Jesus today. It's so comforting that the Lord's wisdom is so abundant and free to receive.

We are getting ready for a BIG weekend, for that matter a very busy week full of Birthday's and fun. My Dad is turning 80 next week and for his Birthday party he wanted to have a BUNCO party, so tomorrow at 5:00 at our church we are planning a fun party to celebrate 80 wonderful years. If you would like to come you are definitely welcome he wants everyone that knows him to come. Let me know if you need instructions. Then of course Sunday is Valentines day, Monday is Natalie 21st Birthday we are planning a too much fun day that day and celebrating her birthday the next evening. Then we are planning a small family party for Gordy's 50th Birthday on Friday night. We leave for the cruise Saturday night, oh my goodness I really don't know how much sleep I will get next week, but that is okay because I will be getting caught up on the cruise:}

Love in Christ,
Luke's Mommy Suzi

The mystery of Luke continues to baffle me, we are off to the Dr. for some answers

I decided to call to make an Dr. appointment for Luke, I take him in at 2:00. The mystery of Luke continues to baffle me, I know he is not feeling well and sounds terrible, but his oxygen levels and heart rate continue to be okay so I'm not sure what is going on. Hopeful for answers today.

Thanks for the continued prayers, they are appreciated!

Love in Christ,
Luke's Mommy Suzi

To contact the Dr. or not, that is the question of the day?

As I mentioned in my last post Luke has been battling something for a few days now. I'm debating today whether I should contact his Pediatrician. He has been coughing out yellow gunk for a few days now and been kind of lethargic, but has not been battling a high fever or high heart rate. He has been on oxygen at night and has desatted a few times, way to low for my liking. I will never, ever get used to seeing my son's oxygen number drop down into the 60's, even if it is just for a few seconds.

What would you do if you were me??? Would you contact the Dr.? Give Luke another day to see how he does? There are days that decisions regarding Luke's health are so complicated and hard. I know that Luke needs prayer and know that God could reach down His Healing Hand right now and touch Him, that is what I'm hoping and believing for today. Would you join with me in prayer for God to touch Luke and Amy who is also battling with a horrible cough today?

Love in Christ,
Luke's Mommy Suzi

We are blessed! Your comments and prayers brought great joy and hope to my heart, thank you:]

Once again I'm humbled and so thankful for the outpouring of love, support and prayers you have so willingly poured out upon our family. Thank you so much for all the wonderful comments, they are like salve to my wounded heart.

Luke has been fighting off some congestion the last few days, I'm just praying that he doesn't get any sicker. Have I told you lately about how much Luke is smiling lately? We can just call him smiley Joe. He is always so attentive to any all and all attention he gets, he loves it when people stop and take time to talk to him and touch him. It is so wonderful to see him so happy:}

We had to say goodbye to Luke's OT Eric, we will miss him and the wonderful care he had taken with Luke. It was so hard for me to see him leave Luke's life, he was one of the few people that work with Luke that really knew that Luke is "in there," he is also a strong Christian and believes in the power of prayer. Until you work with the medical community that gives you little hope of any kind of recovery of your child you will never in a million years know how wonderful it is to have at least one person who knows that God is able to heal and bring about a miracle in your child's life. I would like to pray God's richest blessings upon Eric's life as he continues to bless those children that benefit from his kindness and amazing God given talents.

I was filled with mixed emotions as I heard from Luke's rehab Dr. that both he and the orthopedic surgeon do not feel like Luke is a good candidate for the muscle release surgery that we thought we would have done on him to help him get his legs bending again. They would like Luke to do one more Baclafen pump trial first to see if we can get more relaxing of the legs with a higher dosage of Baclafen, being inserted into his spinal column. There are times that I know the Dr.'s have given up on Luke and any hope that he will ever need or use his legs again. Then I'm reminded that they don't know about the miracle working Father that I love and trust with Luke's healing, they only know what they see with their eyes. Faith is believing what we can not see and that is where I choose to put all my hope!

We did have a Realtor come over to take a walk through our home to do an assessment. To be honest I was a bit discouraged when he left. We had really done so much to get things ready to sale our home, but after his walk through I realized that we have so much more to do. IT IS OVERWHELMING, to say the least. Then to realize that with the housing market so depressed right now our home is worth way less than we had hoped for. My one and only comfort is knowing without a shadow of a doubt that God will sale our home when His perfect timing has come, that He has a perfect place for us to live and to know that He is directing our steps gives me peace to know that He will make a way where there seems to be no way.

Only 11 more days until we leave for our cruise, excitement is building! Along with the hope and prayers that Luke will stay healthy, having him so "junky" this week is not good for my emotions. I know I have to keep my eyes on the God and not my circumstances for that is truly what Faith is all about.

Love in Christ,
Luke's Mommy Suzi

Warning: This post is very long, that's what happens when I wait too long to update it. I hope you will find it to be worth your time.

I'm finally going to sit down and bring Luke's blog up to date. Not sure if anyone really follows it anymore, but since this is our journal of Luke's journey, I thought I'd better get it updated. Luke is doing good lately full of lots of smiles and has been healthy, how wonderful it is to write those words:}

In the last post I mentioned that Luke was getting casted for new hand orthodics. That appointment went great and I could tell the two OT's that were working with him were impressed with his range of motion. The casts look great they were both straight, which is amazing for Luke. Luke's OT Eric is being transferred to a different center and we are praying whether we should follow him there as he has been so wonderful working with Luke. I was so excited about our appointment with Matt the Rolfer, he was sure that the Botox had helped Luke and said that his muscles and deep tissue was feeling better than he had ever felt it before.

We also had a follow up with his rehab Dr. after his botox, it was agreed by all that work with Luke that the shots did some good for Luke. We were told that day that his Dr. would talk with the Orthopedic Dr. about surgery to release some of Luke's muscles to help his legs bend, that was two weeks ago and I still have not heard back yet. I'm thinking I need to call to find out what is happening. We are increasing Luke's Baclafen doses to see if that has any effect on his muscle tone issues. There are times that he seem so to be so much more limber and then there are other times that he is still as tight as he could possibly be, it is extremely challenging to know just exactly what will help Luke, it is also comforting to know that God knows.

I've been holding on tight to my promise from God that Luke is going to be healed, but to be honest my fingers have tried to slip a few times lately. I almost gave up hope, which is a terrible place to be, last year was so hard, it seemed at times that Luke would be better off in heaven with Jesus. Have you ever asked yourself how long, oh how long God?? Where is God, why hasn't He heard my cries?? It's been 5 1/2 very long years since Luke's accident, he will be 7 years old next month, that just doesn't seem possible. I found myself asking those questions a lot lately, realizing that when people talked about a Healing God, I would doubt that was true, not a good place to be. As usual I am being totally honest and open with those that might still be following this journey. Gordy recently told someone that Sue has never wavered in her faith that God is going to completely heal Luke and I had to tell him that is not true anymore. There were many times over the past few months that I have wavered, just shows you how human I really am. God's timing is perfect and I have to continue to rest in knowing that God's ways are definitely not always my ways and his timing is not my timing. God is faithful and my faith has been restored, I am once again believing with my whole heart that Luke will be completely healed here on earth, that he will walk and talk again, for I know that NOTHING, absolutely NOTHING is impossible with God.

We have been getting our home ready to put on the market, I realize that this is not a good time to try to sale a home, but with Luke getting bigger and harder to carry around, we have to find somewhere to move where it will be easier to care for his needs. For the last month we have been working like crazy, decluttering rooms, painting, doing a deep cleaning in the garage, putting in new flooring in our bathroom and the list goes on. . . . This Friday we will be walking a Realtor around our home to do an assessment, I'm praying that we will get what we are thinking our home is worth, but with the market so bad right now we just aren't sure of what we will hear. I am confident if it is God's will for us to move that He will sale our home and help us to find the perfect home to move into.

Guess who is taking her husband on a cruise to celebrate his 50th Birthday?? If you guessed me that would be right. Gordy and I are looking forward to and counting the days until we take off on our Mexican Rivera cruise at the end of the month. We are looking forward to just having some rest and relaxation, with a little bit of fun thrown in there. A whole week of no alarms going off at night, no jumping out of bed in the morning to Luke coughing, no waking up to kids wanting to ask you a question, no laundry, no dishes to wash, no cooking, no working, no stresses with medical bills or appointments or medications to give, no . . . . Don't get me wrong I love, absolutely love my children, anyone who knows me knows this to be true, but I honestly believe that best thing that Gordy and I can do for our children is to keep our marriage strong and we need this time to be together, just the two of us. We are blessed to have Amy, along with Natalie and Joshua who will be staying at our home during that week to watch the kids. Will you pray with us that Luke, for that matter all the children will stay healthy before, during and after our cruise? That would make it so much more enjoyable for us.

Well I've done it again, I've made this post way to long, sorry:/ If you are still reading this you a true friend. A little comment to let us know you are still out there would be great.

Love in Christ,
Luke's Mommy Suzi

Luke is getting new hand orthodics and I know for a fact he would love your prayers today.

First I must apologize for not getting on here sooner. Life has been kind of crazy lately, did I say kind of, I meant to say extremely busy. We are finally getting our home ready to sell. More about that another day.

I wanted to ask you to say a prayer for Luke today, he is getting new hand orthodics today at noon. I know for a fact that he will not like this process and there may be a lot of moaning and crying going on during the process. He will not like wearing them either, I know I wouldn't. We are going straight from there to see Matt the Rolfer in Pt. Townsend, that means we will be in the van for about 6 hours when it is all said and done. I wanted Matt to give me his opinion about if he thinks the botox did Luke any good. I think he is perhaps a little more relaxed when he chooses to be, but I'm just not sure.

Sorry for not posting some pictures I lost my camera last week, though it was finally found yesterday, now I need to travel an hour to go pick it up. Yahoo, that I found it, bummer that I now need to go get it.

I hope you all had a wonderful Christmas and pray that this year will bring many answers to prayers and blessings into your lives.

Love in Christ,
Luke's Mommy Suzi

Merry Christmas Everyone:}

I just want to take a few minutes wish you all a very Merry Christmas. I hope and pray that you have a blessed day, full of joy and fun family memories. Thank you so much for the prayers for Luke he is doing so much better. It's been a busy week and we are ready for Christmas morning. I hope to be able to sit down soon and share some pictures and more news, but I'm extremely tired tonight and I know my children will be up at the crack of dawn wanting to open some Christmas presents. May God richly bless you and your family!

Love in Christ,
Luke's Mommy Suzi

God has not given me a spirit of fear and I am trying so hard not to live in fear today, but it is challenging to say the least.

I'm trying so hard not to let fear over take me today. I decided to read more about the possible side effects of BOTOX injections into kids with CP last night and today I keep praying for peace. As I mentioned before Luke started getting "junky" almost immediately following his injections, he has been needing to be suctioned a lot more lately and having a hard time clearing his throat. With the fever, higher needs for oxygen and his heart rate all over the place, it's been a few stressful days. I knew that kids had died recently after BOTOX injections, but his Dr. assured me that he was giving Luke a little under the recommended dose for someone his size and weight. I just keep hoping and praying that what ever he is dealing with will all go away soon.

I did take him into the Dr. yesterday and he said his lungs sounded fine and he didn't think that he had pneumonia, I was so relieved to hear this. But today he keeps coughing up thick yellowish, greenish goop and is still struggling so after consulting with the Dr. we decided to start him on an antibiotic. I also talked to the Dr. that did the injections and he thought that what Luke is dealing with is not related to the BOTOX injections, but he couldn't say that for sure. He said that if he continues to struggle and we find out that he does have pneumonia he wants Luke admitted into the Hospital. I told him that Luke has not been admitted in the Hospital for years just because of pneumonia, but he told me that if what he is dealing with is related to the BOTOX then we need to keep a closer eye on him for awhile.

I'm praying as I know many of you are that Luke makes a speedy recovery, as he has so often done, I realize this could happen within minutes to hours and that is what I'm hoping for. God has not given me a spirit of fear, but He has given to me a spirit of love, courage and a sound mind! That is what I'm clinging to today:}

Love in Christ,
Luke's Mommy Suzi

Please keep those prayers coming:}

I'm taking Luke into the Dr. today at 2:20, hoping and praying that he doesn't have pneumonia again, since he's already had it 8 times this year. I was pretty sure he was getting better yesterday, but then last night the fever came back and his oxygen levels began to drop again. Needless to say I was up until 4:30 a.m. responding to alarms and his throwing up again. I am exhausted and overwhelmed I have so much to do still to get ready for Christmas and I can not get motivated. Please keep those prayers coming:}

Love in Christ,
Luke's Mommy Suzi

Luke is sick today, would really appreciate your prayers!

Luke is sick, please pray. Ever since he had his Botox injections he has been very congested. I will update more info later, just asking for prayers today.

Thank you,
Luke's Mommy Suzi

Today is the day we are finally going in for Luke's BOTOX injections, please be praying for all to go well, thank you:}

Luke is getting his first BOTOX injections today, he will get some in his wrists and his quads which is in his thighs. We are hoping and praying that the BOTOX will help his wrists to relax enough so that we can get them to stretch out so that they are not be bent all the time. He will then go in next Wednesday for casting of some new orthodics to help train his wrists to stay straight and hopefully help them to actually move without major pain. Then the goal for his legs is that if we can get his knees to move at all we may go back to the Orthopedic surgeon to talk about options of a minor surgery to clip some of the muscles in his quads to help get us moving his knees again. Please be praying that the BOTOX will work and that we will continue to have wisdom in knowing the correct steps to take in getting Luke bending again.

Tomorrow I will be taking all the kids up to Seattle to see the Nutcracker at McCaw Hall, we are all so excited. Deciding whether to take Luke was a huge decision for me as I knew it could be risky going with him if he wasn't having a good day, but the thought of not taking him as he so enjoys the music was so excruciatingly hard for me that I decided to try it. Please be praying that Luke will have a wonderful day, for that matter that we all will, that he will stay healthy and that we will all stay warm as we are having some frigid weather in WA right now.

So much has been going on lately and I have many pictures to share, I'm hoping to get back on here soon to bring y'all up to date. If you are ever curious to know just exactly how things are going in our lives you could always ask to be my friend on Facebook, just be sure to let me know exactly who you are if you make that request.

Love in Christ,
Luke's Mommy Suzi

The Lord has comforted his people, and will have mercy upon his afflicted.

Where, oh where do I begin?? These past few weeks have been filled with lots of good laughter and some sad times with tears. I will begin with the good, Ezekiel celebrated his 9th Birthday, yes I did say 9 years old, so hard to believe. We had a birthday celebration on Sunday after church at Godfather's Pizza Parlor, he then had some friends over to play, he had a super fun day! Then on his birthday I took him out for our special Mom and Birthday child lunch, he chose a Mexican Restaurant where they sang Happy Birthday in Spanish, we had so much fun!

Luke has been doing good lately. I am extremely thankful to say that the whole family is doing great right now, all are healthy, PRAISE GOD!! The only thing that is kind of a bummer lately is that Luke has been waking up on many nights crying and the only thing that will help him go back to sleep is me picking him up and holding him for awhile. I'm hoping and praying that this will not continue on, we both need sleep:} Here are some more pictures of Luke from Josh and Natalie's wedding.

The week after Zeke's birthday was filled with plans of getting ready for our church's women retreat at Leavenworth. It was a wonderful weekend filled with lots of laughter, good prayers times, beautiful scenery, a little bit of shopping, some delicious food and a little bit of restful sleep, I didn't get a lot of it, but what I got was uninterrupted, that made it all the sweeter.

As I was checking up on Luke's prayer links when I got home I noticed that Tori had died on Saturday. Though I never met her or her parents it was really sad to say good bye to her. Tori had a drowning accident a year after Luke and I faithfully checked up on her and prayed for her these last 4 years. Then on Monday I lost a friend to cancer, Pastor Pollock who also had a prayer link on the side went to be with Jesus after a courageous battle with cancer. He left behind his sweet wife Susan and their 9 children ranging from 20 - 2 years old. God has been teaching me how to weep with those that weep, I would much rather rejoice with those that rejoice, for that is easy to do. God sometimes calls us to do the hard things in life and we are rewarded by knowing that through our obedience we receive amazing blessings from him. My heart has also been burdened as I found out a dear friend of mine, Jeanette has thyroid cancer, I have been crying out to God to heal her and am believing for a miracle touch from Jesus. This verse in the Bible has brought me great comfort lately:

Sing, O heavens; and be joyful, O earth; and break forth into
singing, O mountains: for the LORD hath comforted his people,
and will have mercy upon his afflicted.
Isaiah 49:13

Love in Christ,
Luke's Mommy Suzi

Luke's better Praise God! Now I need to get my act together to get out of here soon.

Luke made a speedy recovery yesterday, Praise God! I'm getting ready to go on our church's women's retreat here soon. Just got to get my act together before I leave, I still have quite a bit to do. You know like finishing the laundry and putting it away, packing myself, picking out all the kids clothes for church on Sunday as Gordy will have enough on his plate just getting them out of the door by himself on time, bathing and feeding Luke, getting the other kids fed and ready to start school and the list goes on . . . Do you think I will be able to get out of here in 2 hours?? I hope so.

I would sure appreciate your prayers for Luke to stay healthy this weekend and that Gordy will be able to get some great sleep each night. Also for our retreat to go wonderfully and for women's lives to be changed this weekend.

Love you all so much and appreciate your prayers,
Luke's Mommy Suzi

Trusting in Jesus today to reach down and heal Luke, as he is very sick once again.

I was so tired last night I went to bed early, that is early for me. I was in such a deep sleep that when I woke up the first time to Luke's alarm going off I couldn't remember where I was. I was thinking what is that noise, then I realized it was Luke alarming, I got up and wondered where to find him, weird huh, I guess it just shows how deeply I was sleeping. Needless to say Luke is very sick again. We took him to church last night, which we rarely do and I guess it wasn't the best choice. His heart rate has been soaring way to high all night, which usually means he has a high fever, it was up to 103.5 at one time after giving him some Ibuprofen, stripping him down to his diaper and uncovering him it finally went down to normal. He has been on at least 1 liter of oxygen for the past few hours. Bottom line is he needs prayer.

For the past 5 months my sister Jill, myself and a few other women have been planning a women's retreat at a little Bavarian town called Leavenworth. The theme of the weekend is Trust Walk, learning to trust Jesus through the good and hard times in our lives. Since we decided on this theme we have been tested in truly trusting Jesus, time and time again. Jill's husband John was laid off from his job, Yoli's husband came up on orders to move to San Antonio, TX, Natalie got married, Luke has been battling lots of bouts of pneumonia, we have all been tested in one way or another these past few months. Learning to trust Jesus in the good times is so easy, during the trying times it's a lot harder, but so worth it! I'm trusting and believing that God is going to reach down and heal Luke today, as I have so much to do before tomorrow. Would you join with me in prayer that God will heal Luke today and give me a peace about leaving Gordy home with all the kids this weekend and most importantly that God will teach us all how to completely trust Him no matter what is going on in our lives.

Love in Christ,
Luke's Mommy Suzi