October 16, 2005
October 16, 2005 | Updates
Well, this week has been a busy one. The place doing therapy for Samuel apparently asked for the wrong kind of preauthorization and that’s why our insurance company denied them. So we are set to have a therapist come to our house 3 times a week and our insurance will cover it as long as they can see improvements in Samuel. That’s good news. Now I just need to fight with them to get therapists coming out here that normally work with children and not adults. Hopefully, they’ll see the benefit of that.We also are having the up to 3 program come out about once a week. They are great! They have experience working with children, which makes them very capable of helping Samuel. They are teaching us more and more ways to work with him each day.
Also, our NACD program arrived. I had to buy some supplies to get started and we are slowly working to get it done each day. The program takes about 3 hours to accomplish each time and we can do it up to 4 times a day. I doubt we’ll ever make it to that point. But we’re going to shoot for at least twice a day, if not three times. I love it though. It’s a lot of work, but it gives us something to do with him ALL day, which is wonderful.
We are slowly working on coming down on his meds. We are down to 3 doses of traxene each day instead of 4; 1 1/2 doses of clonadine instead of 2; 360 ml of keppra instead of 400 and 1/2 the dose of miralax he was previously on. It’s a slow process, but I don’t see any adverse reactions so far. He is usually a little irritable for a day or two when I come down on a medication, but then he settles right back down and we’re good again. I’d love to get rid of all of them! But we’ll just have to see how he does.
I am also looking into getting with a nutritionalist and feeding Samuel some things through his tube in addition to his Pediasure. It just doesn’t seem right to never be giving him fresh fruits or vegetables or “real” food. It’s like saying, “Well, your kid is taking a multivitamin each day, so don’t worry about ever feeding him any fruits or vegetables.” We’ll see. But I think it may help with his digestion and weight gain. (I’m concerned he may be loosing some weight.)
We had a few difficulties this week. We took Samuel to the doctor just to make sure he wasn’t getting pneumonia. He was spitting up yellow and green bile and running a slight fever. But his lungs and ears and throat all looked fine, and the spitting up has subsided. Then I noticed his stomach was a little distended a few nights ago and his stools had a lot of mucous and some white sand like specs in them. I called the doctor and he said to just watch him. It seems to have gone away, and I’m sure most of it is caused by his medications, his diet, and his inability to get up and move about much. We’re working on all of that as fast as we can, so hopefully, it will help other things along.
Samuel is looking around more and more. He is even beginning to turn his head to the left (which is hard for him) if he wants to see something or if he is tracking something. He is also sleeping much better at night despite the reduction in his medications. And he is sleeping more during the day, too, which makes me think he’s getting bored so we’ll start working those therapies right up! Oh, and I don’t put his arm braces on him at night anymore because he sleeps with his arms straighter than the braces are. YEAH!
This week, we see his doctor at Primary Childrens on Thursday and meet with the doctor for Hyperbaric Treatments. I’m hoping that next week we can head down to Salt Lake and start those treatments. It will be 8 long weeks of being gone most weekdays, but Samuel and I will get lots and lots of time for therapy in! As I find out more and finalize our plans, I’ll let everyone know what help we could use while we are there or what help the rest of the family here may need.
Keep praying, it’s working!
Love,
The Jewkes
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