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.

He layed down and promptly fell asleep. :-( Now what do I do about shopping?

Wow! Sam said his head hurt as we left for Target. In the 5 min it took to drive there he was screaming in pain. When I parked and let him out of his seat,