Into Day 4
Its very strange, so much seems to happen in one day and yet the days still seem so long. Corey has PT (physio) every morning for approx. 1 hour, then in the afternoons he has Electric wave therapy for 20mins and between all this he gets visited by 2-3 doctors per day. Unfortunately Corey wasn’t all that co-operative for PT, but this is improving everyday. Its when they do stretching with his legs that he cries, as this hurts him, buts its also where he needs it the most.
Monday afternoon was Corey’s first IV injection. They put a IV into his hand, put a IV bag on (fluid) and then we went upstairs for the stem cells. They gave him a anti rejection injection and then the stem cells and he was ok for a little while but then he started to cry, and then really cry. It was upsetting. I was worried that he might be in pain for the stem cells, but he eventually settled down. The whole thing was only for about 20 mins in total but it seemed like hours.
Friday afternoon is his first Spinal Injection. He can’t eat or drink for 6 hrs before, and he will be sedated for the procedure. Following the procedure he has to lie still (like very still, no moving at all) for 6 hrs to prevent him from getting a severe headache. Also I have to keep his activity to a minimum for 48 hrs following. That’s a lot of Elmo movies. I have learned a lot from sitting in the common lounge area and talking to the other parents/caregivers about their experience to date. Everybody is very friendly and willing to help where they can. Some of their experiences have been eye opening. Some parents have had to basically lie on their child to keep them still for six hours. As you could imagine it was very traumatic for the child and the parent. I have gotten tips like, get him up early to have something to eat and don’t let him sleep all day so that by that time he will be tired anyway. Also request that he be sedated so that between the sedation and him being tired, he will most probably sleep for the six hrs following. No question about that, Corey will be sedated. I also need to make sure that the nurses give him liquids via IV before and after the procedure.
So have I noticed anything? Well its to early to say. He does seem to be speaking more in sentences. I think this is due to so much interaction and activity, which is good. Also I noticed that I don’t have to correct his index fingers when he holds his water bottle like I always had too. I noticed this that Monday evening because it was such a common occurrence. But this could also be from all the constant correcting finally paying off. I hope to give you a further update early next week.
Thanks for the comments they are really appreciated by us both. Also those parents from home, read up on hyperbaric therapy (HBO), apparently it can be very valuable following treatment at between 90-120 days. Also parents with children with CP who have used HBO have had improvements.
10 comments August 6th, 2008
