Finally......

Joshua 1:9 (King James Version)
9Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest.

Proverbs 3:5-6 (King James Version)
5Trust in the LORD with all thine heart; and lean not unto thine own understanding.
6In all thy ways acknowledge him, and he shall direct thy paths.

Psalm 30:11-12 (King James Version)
11Thou hast turned for me my mourning into dancing: thou hast put off my sackcloth, and girded me with gladness;
12To the end that my glory may sing praise to thee, and not be silent. O LORD my God, I will give thanks unto thee for ever.

Philippians 4:6-7 (King James Version)
6Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
7And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

Blogger is down so I’m putting this into Word and will cut and paste later. This morning I went to facebook and the first three verses show up in my feed. Three different people put these verses in their status and they all came together for me. I’m not sure how I see dancing about Sam’s surgery, but be not afraid I will not be alone. God will take away my mourning. Last night at church I went forward for prayer for the surgery and my coping of it. I’m not alone. Wednesday was a quiet day while the older ones were at school and I started to freak some being mostly alone with my thoughts. I’m not alone came through again and again with the men I prayed with. One of them shared Phil 4:6-7. That verse jumped out at me a few months ago while I was waiting for results of biopsies. God understands, I don’t need to. Even if doctors don’t figure out exactly what is going on with Sam, God understands.

There are times I am so afraid that this is starting Sam down a road of repeated brain surgeries. Then I tell myself he has done remarkably well with surgeries in the past year. He has had pleanty of practice with 5 in the last year, and two sedated MRIs. This unkown is so hard. But isn’t that all of life?

Sam is doing well. He was a little more tired today and had a headache again this afternoon. He was strapped into his carseat when he told us and I was grateful we made it to our destination without it escalating to severly. He also had his last therepy before surgery. We are to play it by ear, mabey check in after surgery, definitely after we see Dr Healy next month. I pray he stays healthy until Wednesday so we do not have to delay the surgery. He is loving his calendar and so careful to keep it up. He crosses of a day each night and each morning he tears off a chain.

Ok this was written 5/12 and finally I could get in and post 5/13.

7 days....

Sam remains excited about surgery and continually asks when we can go to the hospital. As soon as I can find the stapler, I'm going to make him a chain to help count down the days. I however am a bundle of nerves. Little things like running out of dish soap two days before payday, and a chance to get more, are bringing me to tears. Pre-Op called last night to go over things before surgery.

9 days....

First thing Sam asked when he came downstairs was how many days until his surgery! This was in an upbeat positive voice, not a dreading one. He then told my friend that the doctor was going to fix his brain so he didn't have headaches anymore, but he can't eat while there.

I had Sam's IEP/transition meeting this morning with the staff from the preschool he is at now and the elementary school he will be at next year. I feel we have a good plan in place and flexibility worked in to meet the needs that could come up. As his preschool teacher said, sam's status can change overnight. By fall I need to get a good idea of his lesions and risk of fracture.

Perect Peace.....

³Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. (Isaiah 26:3, King James Version)

Today I told the kids about the coming surgery. 10 days away. They have haeard to many bits and pieces of things so I just said it all. I feel relieved to have it out in the open with them. I think Sam is ready to go tomorrow! He doesn't seem to remember the pain and discomfort of previous stays. He was talking about the food that comes whenever you need it and the toys though! He got a little subdued when I said he would have an iv when he wakes up afer surgery. He just doesn't have a clue how tough this will be. A seemed a little indifferent and was not interested in talking much. He was the first to leave the room. Z &E were more excited about getting to go to thier cousins that weekend. Though Z had more questions later.

I have a dear friend who has had her daughter go through brain surgery at 8 weeks for craniosynostosis. She prayed with me this morning about the upcoming surgery and one thing she mentioned is peace. Yesterday someone posted a video of Laura Story's song Perfect Peace on facebook. I think this needs to be my verse for this ordeal.

Planning...

Sam has had 5 surgeries and 2 MRI's under sedation at Gillette in the last year. the MRI's have been planned ahead of time but the surgeries have all been emergent in nature. this is the first surgery we have planned for. I got a big envelope stamped PREOP in the mail today. It is a folder/booklet titled "Planning for Your Surgery". It has things broken by down month before, two weeks before, day before and day of your surery. Even information about after surgery and staying at the hospital. They don't say if one can get wireless access to the internet. I know there are computers available for use throughout the hospital but now that we have a laptop I want to bring that.

Surgery Date

I finally have a date for surgery, May 18. We need to be there bright and early at 6:30 am. surgery is to start at 8 am and should last about 3 hours. Then Sam will be in house they call it, we say in the hospital, about 4 days. the first night will be in PICU.

I am really struggling with the stress of it all. Thinking about what he will go through, about what I want to/need to do before then (clean the house really well, make some button up pjs for him in fun fabrics), make arrangements for the other kids and on the list goes. I find my eating habits are deteriorating. The other times he has been in the hospital, my ulcerative colitis has flared up. I don't need that now.

I am thankful for support I am getting too. I have a friend, our girls are in the same 4th grade class, who works at Gillette and it is so comforting to be able to talk with someone who has seen this from the other side. At the same time she is a mom with a special needs kid and has the mom heart too. Sam's preschool, ECLC in 196, has been fantastic. I am so thankful that I have someplace to send him where he is loved, cared for, and stimulated each day. His teacher said today they will come visit him in the hospital. That will be so good for him and me! The ladies from my Tuesday night prayer group are great too.

Sam's headaches continue to increase too. They are coming two and three times a day. I really think it is beginning to wear him out. He is just not quite his usual smiley busy self. he is laying down a lot more and just a bit quieter. Last week at therapy the PT thought his limp was worse. I think it is too because of the strain of the headaches on his body. Not to mention chiari can cause leg pain too. I am also worried about his back. He is complaining of low back pain and the MRI noted FD on several vertebra from C3 on down.

This has been a tough weekend as far as headaches go. We had the big one on Friday then three on Saturday and one on Sunday. I am letting him lay as he needs so the headache does not escalate like Friday's did when he was pinned upright in his carseat. I am anxious to hear from the hospital about when surgery is.