October 17, 2006
October 17, 2006 | Updates
So this week was hectic again, but that’s nothing new. Sometimes people tell me they can’t believe how hectic our lives are. But sometimes, hectic is OK because it doesn’t give us much time to think about things that aren’t quite going our way.
Anyway, we had another meeting with Samuel’s team at preschool because he has basically reached all the communication goals they set for him at the beginning of the year already. I knew they were too easy for him when they set them, but they didn’t know Samuel and I felt it best to just let them be surprised at what he can do. And they are! They wanted him to be consistent at activating switches on the computer and choosing things with eye gaze and to attend to the teacher and stories and songs and such. He has already far surpassed anything they expected during the entire year. So that is great!
We talked about a lot of things. They are going to work with Samuel on learning the meanings of more words just like any normal 3 year old would be doing - colors, numbers, letters, shapes, vocabulary, etc. They are also going to work on a system where he can choose things through eye gaze, but in a more complicated way. For instance, they will have 3 or 4 categories for him to choose from like toys or food or music and then once he chooses a category, then they will let him choose a specific thing within the category. But the categories and possible options will always be the same so he will get used to using the system and then they will work it into a computer program so he can make choices with a computer switch. It should be pretty neat.
We also talked about a bunch of other options using the computer to communicate. There is a program called “eagle eyes” that we were referred to by the parents of another near drowned child that uses electrodes on the face to track eye movement and then moves the pointer on the screen based on where the person is looking. There are other programs where they place a small device on your forehead and you move the pointer by moving your head. Or they can program a camera to follow your head movement and move the pointer based on that. There are a lot of options, and we will definitely try them until we find a good one for Samuel. Not only will it allow him to communicate, but it will allow him to play regular kid computer games which I think he will love!
The greatest thing is the district can loan us these things to try for 30 days at a time to figure out what works best for him before we invest in it. I told them I thought we should wait a few months and give Samuel some more time to work with the eye gaze board and then try these things out. The things I love is that his teachers thought I was nuts and wanted to try them RIGHT NOW! They said they are blown away by Samuel and just know he is in there and want to find him a way to get out. What a great thing to have them see the potential we see in him!
Outpatient therapy was OK. I still like our PT, but I don’t love our new OT. To be honest, she was making ME sleepy :)! So I called a new therapy place in town and we are meeting with them this Friday to see what they might be able to offer us. It’s a little farther away, but if we’re going, we might as well be seeing benefits from it!
Last of all, we went to Bountiful to see our rehab doctor and have Samuel’s pump lowered again. He is now at 700 micrograms per day – less than half his maximum dose of 1500 per day. And we will definitely continue to come down. She said he looks great. We talked a bit about his seizures and I told her I have actually been increasing his Keppra a bit to try and combat them. It’s not that I think they are dangerous. But I do know that he hates them and I hate watching him deal with them all the time. Besides, I don’t see that the Keprra affects him cognitively. So I think for now, increasing it is a win-win situation.We also discussed his lack of trunk and head control and we both feel that coming down on the pump should help that. I was concerned that he always seems to pull to the right with his abdominal muscles. She agreed and said that he is forming a slight curve in his back. Hopefully, we can strengthen his left side. If not, we may have to botox the right side to keep the curve from happening. But for now, we will just keep an eye on it.
She also indicated that although all his joints look good – including his hips and ankles – he is rolling in the arches in his feet a bit. So we will look for some arch supports to keep that from progressing. I’m hoping to find some kind of support that won’t require him to wear shoes on top of it because he gets such great traction with shoes on, that he really gets to flopping around the floor and banging his head on things!
And we talked about switching his formula to Pediatric Compleat instead of Pediasure. I have heard from several mothers that their children tolerate that better. And Samuel still throws up and spits up a lot and just is not keeping weight on. Pediasure is mostly made from soy beans where the Compleat is supposed to be made more from “real” foods. The doctor said the problem with the Compleat is it is expensive. Ah, ha! So that’s why my son is on soy bean formula. Seems so stupid that the kids who really need the nutrition the most get it the least! Oh, well, I guess I can just be thankful that Samuel has an “intolerance to Pediasure” so I can convince our insurance to pay for the Compleat. Hopefully, it will do all I’m hoping it will.
So that’s our week. This week is school lunch week and parent teacher conferences, so we’ll be busy again. One last interesting note…our rehab doctor emailed me a few weeks ago asking for pictures of Samuel before his accident, right after his accident, during recovery and now. She was speaking at some convention and wanted to talk about alternative therapies. She wanted to use Samuel as an example of the possible benefits of hyperbaric treatments. Of course, I stayed up late that night and got her all the pictures she could possibly use because I have been so impressed by what hyperbarics have done for Samuel. Well, at our appointment, she thanked me for the pictures and said her lecture went well and she used all the information I had sent her. Pretty cool, huh? Our little guy is not only a miracle, but a famous one! (Well, sort of!)
Keep up the prayers! We sure appreciate them. And no colds yet! KNOCK ON WOOD!
Love,
The Jewkes
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