Archive for March, 2007
March 25, 2007
March 25, 2007 | Updates
Another week, not too much news. Samuel had speech therapy and physical therapy. We think the reason he isn’t crawling yet is because he rolls over so easily that he doesn’t have enough time on his stomach to get into the “groove” of it. So, we’re working on fixing that. Our speech therapist is also looking for some help from USU because he hasn’t ever encountered a child like Samuel and isn’t quite sure what to do. Hopefully, someone there has some ideas for him.We went down just 30 micrograms on his baclofen pump and he handled it very well. We will go back down to Primary’s this week to decrease it a little again. I am also getting set to schedule more hyperbaric treatments since I am seeing more tone in Samuel and want to keep it under control. Right now, his left leg is just tighter than it has been. It doesn’t concern me because he still bends it plenty and he has great range in it. It is just harder for us to bend it once he straightens it. It’s hard to explain. It’s almost like he is just stronger so once he has it straight, good luck bending it until he decides to do it. But I can tell it is caused by increase in his tone.
He is also pulling to the right more often than he was and that concerns me for his back. But he is still plenty flexible to the left, so I will just watch it closely. We just want to find the right balance so that his tone is not hurting him, but he has function. With too much baclofen, he can’t do anything. But he also has less tone with more baclofen, so it is a balancing act.
On the good side, he is getting better and better control of his trunk and head as we come down farther and farther.
The only other real news is they got him a walker at school so he can be in it during recess. I haven’t seen it yet, but I’m sure he will like that. That is one thing I always hated was seeing him laying on the floor or sitting in his wheelchair during recess. It just feels like kids should be running around then. Well, now he can in his own way!
Oh, yea, he finally stayed awake all the way home one day from school, so now he knows that the bus brings him home. I wondered if he had any idea :).
Still working on the website. It’s coming, though. And fundraisers. They’re coming also. And I’m trying to decide on what things I want to pursue first, because there are so many things out there I would like to try, but we are limited by time and money, so we shall see what I decide on.
Thanks so much for all your prayers. Please continue praying…
Love,
The Jewkes
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
March 11, 2007
March 11, 2007 | Updates
Guess what? Today daylight savings time changed and we FORGOT?! Not the first time, though. We were all in the car ready to head to church at 8:30 am and suddenly realized it was 9:30 am and we were 1/2 an hour late, not 1/2 an hour early. What a pain! And I’m afraid it’s going to be a bit of a pain for the next week getting everyone on the right sleep schedule. But the time change also means spring is coming and we’re certainly excited for that!Samuel seems to have recovered from his pump decrease except for 2 things. First, he is grinding his teeth a TON. Second, his stomach muscles are contracting a lot so he just cannot seem to stay on his back. He is always pulling his legs into the air when he’s on his back and he is always rolling over. Changing his diaper and his clothes is tricky. But he also has more control over his arms and legs since the decrease. He is SO CLOSE to crawling. If I move his arms for him, he basically does his legs. And if I just give his legs a bit of support, he can propel himself forward. He is also spending more time on his stomach with his arms supporting his upper torso and his head held high. I’m hoping that the next decrease will simply give him more control and not cause additional tightness and teeth grinding. But we will have to just wait and see. (I should also specify that the crawling he is doing is army crawling, not up on all fours.)
We met our new physical therapist and he seems like he will be good. We are going to focus on crawling until Samuel achieves that. I’m hoping it will be soon! It was fun because I told the PT that Samuel could propel himself forward with just a little help from me and I don’t think he believed me because when I showed him, he looked awfully surprised and let out a bit of a gasp. Yee, hah, Samuel! I love blowing people away!
Otherwise, not much happening here. The kids have been out of school a lot the past 10 days for parent teacher conferences. Nathan had his 9 month checkup (weighed in at 16 lbs) and got a set of shots which caused quite a fever for the next few days. The kids all did well with parent teacher conferences. Their school work suffered a bit after Samuel’s accident and then me being pregnant, but they seem to finally be pulling back into place and acting like their lives have settled back into a “normal” routine.
It’s crazy how important it is to have some sense of “normal” in your life. Even if it isn’t normal for everyone else, it needs to be normal for you. At least most of every day needs to be “expectable” and fortunately, our lives seem to have finally returned to that point. We finally have a normal of our own and it feels nice.
I’m considering more hyperbaric treatments in the near future, especially if the next pump decrease seems to cause Samuel’s tone to increase. And we are still considering stem cell treatments in China, but haven’t made a final decision there. I am also considering purchasing a hyperbaric chamber for our home since I’m feeling like those treatments are something we will want to continue to pursue for quite some time. But, it’s all about money and time, so we will have to see.
Keep praying for crawling and eating. We are certainly seeing improvements in Samuel’s crawling and it is exciting! Thanks again to everyone. Oh, and we should soon have a new website that I am really excited about!
Love,
The Jewkes
