April 1, 2007
April 1, 2007 | Updates
Wow, this week went fast. Tuesday morning, I woke to take Samuel to school and he had thrown up in his bed, so we really had to hustle to get him bathed and out to school in time for their field trip to the fire station. It seemed that he had a good time on the trip and he seemed very proud of the red fire helmet he came home with that afternoon. Wednesday morning turned off suddenly cold. There was an obvious storm moving in quickly and when I went to wake Samuel, he was having a lot of seizures. I got him ready and they seemed to subside, so I took him to school. About an hour and a half in o school, his teacher called me. She said he had been having a lot of seizures and was very pale and obviously tired. So I went and picked him up. I brought him home and tried to get him to sleep, but he seemed to be feeling better so I let him watch TV. We later went to the chiropractor and then he did therapy with Kaylee and did really well. Thursday, Samuel continued to have more seizures than usual and by Friday, I put a call into his neurologist so we could try a new medication to control them. He didn’t call me back, so I put in another call Friday afternoon. Saturday morning, he gave me a call to ask me when Samuel’s last EEG was. I told him that he had just ordered an EEG for Samuel about 6 weeks ago. He told me he would find that report and call me back. So far, he hasn’t. Frustrating! We had guests all weekend - some old friends from high school and their kids. Samuel tolerated all the extra noise really well and seemed to enjoy having everyone around. He spent a little time today in the power wheelchair we have on loan to us. I put his tumble form blue chair in it and he is more comfortable now than in the old seat, so we will try again to see if we can teach him to use it. I think he will at least be able to get the idea that hitting the switch moves the chair - even if he can’t control where it is going.
Otherwise, Samuel is just really moving all the time. His legs are tighter as is his stomach. I am worrying everyday about whether or not we have hit the limit of reduction on his baclofen. It wouldn’t matter so much to me except for the fact that we can’t get rid of his feeding tube as long as we have the baclofen pump unless he learns to eat on his own and I don’t forsee that in the near future. And he and I are both VERY sick of the feeding tube. He fights me tooth and nail everytime I touch it and I KNOW it is affecting his aversion to us touching his mouth or face. Again, frustrating.
We weren’t able to make our appointment to reduce his pump this week due to some last minute problems with our business, so that will have to be rescheduled. I’m not sure when I will reschedule it for. They are pretty booked next week, so we may just keep the appointment we have the week after.
Well, that’s about it for now. I think I’m in a bit of a downer mood tonight and this wasn’t the best time to post. Sometimes, the ups and downs and inbetweens just wear on us all a bit. Samuel is doing so well, but it is so slow and it’s hard to be patient. And then setbacks like seizures and increased tone and not much progress on the eating front feel a bit overwhelming. But then again, weekends are always a little bit hard because there isn’t as much to keep Samuel busy and he gets bored and agitated and it affects me also. I seem to only have good days when he does. I guess that’s probably natural.
So, here’s to a great week ahead. Tomorrow’s another day and hopefully, if nothing else, the weather will be nicer this week :)! Keep praying. We know when you do. It’s helps us a ton!
Love,
The Jewkes
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