Neurology appointment

Caleb had a neurology appointment this week. I really like our doctor and I feel like we came up with a good plan to see if we can increase Caleb's comfort level. We are going to try to wean him off of one of his seizure medications (topamax) because we're not sure if he's really needing it or not. We are also going to start giving him a new medication called baclofen. It is supposed to help his muscles relax more. Dr. Fillioux explained that as a typical brain develops, it is able to send signals to the central nervous system to help the body to stay relaxed. Because Caleb's brain is not developed, his body is not getting those signals, which may result in the rigid arching behavior we are seeing. It seems like discomfort triggers his body to stiffen, but then he'll stay in a cycle of rigid behavior for longer than he should. We'll try giving him this medicine 3-4 times a day to see if it helps. We have the option to have it pumped right into his spine, but are going to try giving it orally first. Caleb has developed strong little muscles, but hopefully now we'll be able to keep him comfortable for longer periods of time. Good luck Caleb!

Questions

Caleb has had a rough couple of days. He was quite agitated all weekend, and all through the night last night. His body gets so rigid- He kicks his little legs, and arches his body so much that his cheeks turn bright red and he can't settle down. He can't keep any food in his tummy when he's so uncomfortable, and it seems like we're limited on what we can do. Discomfort also seems to increase his siezures. Most medicine we've been given to help during these times doesn't seem to work for him. It's just heartbreaking to see him feel uncomfortable. I finally called his pediatrician today to see if we could figure out how to help him. Of course, Caleb totally relaxed a few hours before our appointment, and he didn't show the doctor any of his tricks while we were there. This doctor visit was like most that I have with the medical Field...."Caleb is uncharted territory...he wasn't supposed to live this long...we've never seen a child like him at this age..." At times it is quite challenging to have so many questions and so few answers. But we're so blessed that we have more questions because it means we still have Caleb! I guess the key to helping him relax is to schedule a doctors appointment! I have an appointment with a neurologist on Wednesday, hopefully it'll have the same effect!

Just breathe...

Caleb hasn't been hooked up to oxygen for 3 whole days!! It's amazing how easy it seems to load him into the car without lugging a tank of oxygen everywhere we go! He still has obstruction and clenching issues that make breathing difficult for him, but oxygen doesn't seem to help in those times. Now if we can just put a bubble around him to protect him from respiratory illness this fall and winter...

Sharing

Mitchell is just starting to learn about sharing. If you saw him in nursery you'd understand the "just starting" part. If any child even walks toward him he drops to the ground and covers whatever toy he's playing with his whole body. (no fumbles for this boy!) The other day I put Mitchell and Caleb in the bath together. Mitchell put some soap on his hands and started gently washing Caleb's hair. Then he took all of his toy boats that he had carefully lined up and started putting them in Caleb's hands. "Here doe Talah" he said, "here doe." My heart melted as I realized that Mitchell sees Caleb as his baby brother and that his first real sharing moment was with him.