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.