Had to share....so cute!
We went to Edmonton this last weekend (Thanksgiving weekend) to a Spina Bifida conference. It was super informational, plus the kids always love playing in the hotel pool. Although, I think they are trying to put the worry into all parents. In every single session the doctors expressed how much physical pain the poor people with Spina Bifida have to endure and how to manage pain properly. Basically everyone with Spina Bifida does and is going to have some form of chronic pain their whole lives. Sterling does have chronic back pain (because of his spine surgery) and chronic headaches (because of his shunt and the pressure of the fluid in his head that isn't draining properly and also from the chiari malformation in his head). Half a litre of spinal fluid goes through your body a day. Sterling has a blockage in his brain from his spinal column and brain being pulled down into his neck. This happened when his body was forming and the spine didn't close properly so the spine got stuck. It started pulling on the rest of his spinal column which is connected to the brain and pulled it lower into his neck to create a blockage. So in order to get the fluid flowing, they had to put a VP shunt into his brain to bypass the spine and go directly into his belly to drain when he goes to the bathroom. Sometimes I just forget how much pain Sterling is in all the time because he just rarely complains of it. What a tough little guy! Basically, every morning he wakes up the first thing he says is "Mama, my zipper hurts, will you give it a rub?" We call his scar running up the middle of his back his zipper and the scars to either side his buttons. So every morning I give his back a rub right when he wakes up. That is usually the extent of his complaining unless he has a super bad headache. If I ask him, "Does your back hurt?", he always says yes. The neurosurgery nurse said that a lot of people with shunts function with a permanent low grade headache and then have severe ones in between and never know what it feels like to be pain free.
The most interesting things I learned were:
- That Sterling's whole body is perfectly formed, except for the one point in the spine where the connections aren't working properly. So this means that all his nerves in his legs are bladder are properly formed, they are just broken connections at the spine so the body can't get signals to them. (In China they are doing rerouting surgeries to move the connections to a part on the spine that is working, so the nerves can function).
-The average amount of shunts per lifetime is 4 (some people have 1 and others have over 30)
-Strong emotions, such as extreme joy, stress, sadness or happiness can equal pressure in the head with his shunt and make him have a really bad headache. (So that explains him being grumpy after he plays with his friends).
-There isn't really many good options to treat bowel management yet (Poor Sterls!), so hopefully a new treatment is coming our way soon.
Sterling had a blast at the conference. We sent him to the family camp there and he got to meet two other children his age in chairs like him! Although, he didn't really seem to be too impressed that there were others in chairs like him. The conference was in West Edmonton Mall and the family camp took him out on three separate trips into the mall. They took him to build-a-bear where he picked his 4th bear from there, which happened to be a super ugly orange fleece owl that was naked. All the other kids had clothes on theirs, but not Sterls! THen they took all the kids bowling in the mall and lastly the they took them to touch spineless sea creatures. He didn't even care when we went to pick him up that we were there. Yup, fun!
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