October 2, 2005
October 2, 2005 | Updates
This week has been a pretty hectic one. But before I update, I wanted to ask a favor. An EMT from Paradise stopped by a few days ago and told me that she rode into Logan with Samuel in the ambulance the night of the accident. I should have gotten her contact information, but didn’t. She said she had wanted to get ahold of me, but didn’t necessarily feel comfortable posting on the carepages. I’m wondering if when she reads this if she will email me at thejewkes@comcast.net. Also, if there are others of you who would like to contact us, but don’t feel comfortable doing it here, feel free to email us. I can’t promise to reply to all of you, but I would love to hear from you. Thanks.Onto the update…we went down to Primary Childrens on Wednesday and it made for a pretty long day. Just as I had figured, when we went for Samuel’s audiology appt, they told us there really is only one other test they can do for his hearing and he has to be sedated for that one. So that appt was a waste. I’m not quite sure why the discharge nurse scheduled it for Samuel. But, oh well. We did get his pump refilled and saw our doctor (Dr. Such-Niebar) and our physical and occupational therapists that worked with Samuel while we stayed down there.
Our doctor is phenomenal. I could be really good friends with her. We couldn’t get an appt with her at the same time as Samuel’s refill, so she said she would stop by on her lunch hour. She was with us for 45 minutes and I know she missed lunch altogether. And then when we scheduled for his next appt, we had the same problem and she said she would use her lunch hour again. Pretty neat! Everyone said Samuel looked even better than when we left. They said his eyes looked brighter and he was definitely tracking more. To show off, he peed right when we got to the doctor’s office and filled his diaper so full he got all his clothes wet and we had to totally redress him!
Everything went well except the getting there and back in the car seat. I gave him medication to put him to sleep both ways, but he only slept about 45 minutes each way and was pretty unhappy the rest of the way. I’m not really sure what to do to fix that.
Otherwise, we’re just busy with lots of therapy and the regular “routine” Samuel requires. He’s still not sleeping well at night and he does have to be cathed during the night. But he is happy for the most part during the days. He is still posturing about the same, but he does calm more and more when we rub him or move him. So I know he is getting more aware of his body. I am also working him onto gravity feeds. His feeds right now take way too long and I’m tired of him being attached to the feeding machine so much. So we are slowly working up to feeding him just 3 times a day for about 20 minutes each time. That’s the goal. We’re currently at 6 times a day - 15 minutes each. Which is much better than the past 3 times a day - 2 hours each!
This week we are headed to Ogden to visit the National Academy for Child Development. They will make up a home therapy routine for us that we can administer to Samuel in addition to his regular therapies. We’re pretty excited.
Samuel is having more and more of his “episodes” as he becomes more aware. But he is also biting his cheeks less and hardly ever bites his tongue anymore. Hopefully, it is just positive progression of his brain. I also think I may be seeing more and more myoclonic jerks. But I’ll keep watching and talk to the doctor if I decide I’m right.
Last of all, we have now been faced with new insurance issues. Our health insurance is denying most of Samuel’s claims for reasons I won’t go into. But it’s frustrating and looking like we’re going to have to hire legal help to push things through. Just one more thing to add to the pile, I guess. Hopefully, it won’t turn into anything too huge.
Thanks to everyone who continues to help us out! You’re lifesavers!
Love,
The Jewkes
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