February 4, 2007
February 4, 2007 | Updates
Another week gone by. I don’t know if you all realized that a few weeks ago we passed the 18 month mark since Samuel’s accident. It is such a strange feeling to know that we are that far out from that day. I can still remember that day like it was yesterday and yet, sometimes, I struggle to remember what he was like before his accident. That makes me sad, but I also realize it is a gift as the pain that followed me around those first 6 months was not something I could have endured forever, so I have allowed it to happen to make life liveable again.This week we visited the NACD to review Samuel’s home therapy program. My biggest concerns were that he is still not eating and he does not seem to know how to use his hands much to help him in the crawling we are trying to teach him. They told us that the answer to teaching him the use of his hands and to teach him crawling is the slide that we made him a month ago with foot and hand holds. The slide is in his room and we have it at an incline so that it is easy for him to move himself forward since he is facing downhill. It also has holes in it where he can put his feet and hands to help pull himself along. But he so hates the slide (of course)!
The NACD suggested that we incline the slide upwards so that Samuel is pulling himself up the slide. That may give him more feeling of being in control. So that is what we will do. We are also padding the slide to make it less hard so it will be more comfortable as we work with him on it.
The feeding is a whole different issue. They suggested we feed him even more than we are. And that is what we will do. But it is hard. One day this week, he ate 1/2 a cup of yogurt which is a record for him. But since that day, he has literally refused to eat! He will turn his head and throw his arms at you and block his mouth by sticking out his tongue. It is nearly impossible to get anything in his mouth and if you do, he pushes it right back out. It’s frustrating!
There are a few other things I have noticed with Samuel lately. He seems to be over the recent pump decrease. But he also changed in that he needs to be stimilated constantly or he is unhappy. If he is not doing something with someone or watching TV, he is upset. He used to be happy to lay on the floor and roll around for at least a while, but this seems to no longer be the case. I don’t know if it’s a good or bad change, but it is definitely a change.
He also seems to be just a bit spoiled. We have not disciplined him at all because, well, how would we even go about doing that? But he seems to more and more be giving us the signal that he WILL NOT be participating in things that he does not enjoy. I wish we could just give into that, but much of what he needs to do to get well is not stuff that he enjoys. The NACD suggested “time outs”. I was pretty sure I couldn’t do that, but said I would give it a try.
So, we have a portable crib in one bedroom where we can shut the door and it would be very boring for Samuel. During therapy the last few days of the week, if Samuel refused to participate, we would tell him he would be getting a time out if he didn’t and something fun if he did - like we would throw him in the air or swing him. Well, we did time out once (for just about 5 minutes) and Samuel participated great from then on. I’m sure there will be other times when we’ll have to do time out. But it’s not mean, just boring for him. And he doesn’t like boring. And the fact that it’s working tells me that he does understand all that we are telling him. He just needs a little push to keep working hard. Wouldn’t we all!
We have an EEG scheduled this week to see what we can learn about Samuel’s seizures. Hopefully, we can find something to help curb them as they are getting worse. They seem to be the same as far as frequency and duration, but he is turning very pale with many of them.
Please keep praying!
Love,
The Jewkes
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