March 18, 2007
March 18, 2007 | Updates
This week was a bit slow, which is sometimes nice. Samuel had school, but all our help was gone on spring break. Grandma came to stay with us and helped a ton with wash and dinner and dishes and homework. Samuel just did a bit of therapy with me each day. But, otherwise, he got to relax most of the days.We did meet Samuel’s new occupational therapist this week. We talked about the things we’d like to accomplish with him over the next while. We also talked about getting him some new equipment. We absolutely need a bath chair for Samuel. It is getting impossible for me to bathe in him the tub just by lifting him in and then lifting him back out when he is all wet and slippery. I also asked them to work on a new walker for Samuel, some new foot braces because his arches aren’t getting enough support (per his doctor) and possibly a vest to help give him some input around his trunk to give him more control over his trunk muscles. I’m excited to finally have his new therapists in place and some help on the equipment issues. He will only be getting therapy 1-2 times a week, but at this point, the therapists are just a sounding board for new ideas. We have to be the ones to work with him at home each day if we want him to learn what we are hoping he will.
Eating is still a huge struggle with Samuel. He just doesn’t seem to be making any progress on that front and it is frustrating. I’m beginning to wonder if things would be better if he had a g-tube directly into his stomach rather than the ng tube in his nose. I think putting that tube down his nose and throat over and over again over the past 18 months has really affected him. He flinches whenever we get near his face. (Unless we are kissing him, which he seems to enjoy.) We would have given him a g-tube long ago except we simply can’t because his baclofen pump was placed on the wrong side of his abodomen. So, until the pump comes out or he grows another 4 inches (or we move the pump, which we WON’T!), we have to deal with the tube in his nose.
We have an appointment to have his baclofen reduced again this week. I don’t think we can go down the 75 micrograms we’ve been doing each time, however. It is just too much of a decrease for him. So I will be talking to them about options of how to get the doseage decreased quickly without going down so much at once. It will probably require us driving down to Salt Lake many times, but we need to figure out if we can get the pump out or not and we need to know how much ability he has without it and we need to get a g-tube as soon as possible. I’m feeling it may really help with his eating. However, I am seeing more tone in his legs and stomach over the last month, so there may be issues in getting rid of the pump all together. I don’t know. I guess time will tell.
One last thing. About a week ago, I held Samuel up as you do a little child to see if he would attempt to walk and he took about 8 steps. He did that over and over again for several days, so I decided to try his walker. I don’t know if you recall, but he used to scream for up to 20 minutes each time I placed him in the walker and I could not get him to even attempt to use it. Well, this time, he wasn’t mad and he took off walking. He walked about 25 feet from the garage to the road and then back again! I just about exploded with amazement! I, of course, had to direct where he was going, but he propelled himself the entire way. It was great! I have tried it a few times since, and he hasn’t done as well, but it is because the walker does not support him well. So I am working at getting him a different one since this one is very old and just on loan to us.
Oh, yea, Samuel also has a bit of a cold, but it seems to be a light cold and should pass soon. Keep praying for our little guy! I know he can do this. It will just take lots of time and patience.
Love,
The Jewkes
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