December 18, 2006
December 18, 2006 | Updates
Well, we finished up hyperbarics. Samuel did great on Monday and on Tuesday, we had to pull him out about 18 minutes early because he pulled ground off his leg again. It’s pretty crazy that he does that because we put a big sticker on his leg that the ground attaches to, then we wrap the sticker in coban and wrap that in medical tape. Then we run the cord on the ground up underneath the mattress Samuel is laying on so he hopefully can’t get ahold of it. But in the 10 sessions we just did, he actually got it off 3 different times. WOW! What a wiggler!The big news though…that makes 100 hyperbaric treatments! Whew! That’s a lot of gas and a lot of hours in the car and, well, a lot of money. But it has been well worth it and if we went back in time, we would do it again. But thank heavens we won’t have to do those 100 again :)!
Other big news…Samuel weighs 30 lbs. That’s been my goal for months now, and we FINALLY made it! I think the new formula is helping because although he still spits up plenty, it’s about 1/4 of the amount he used to spit up and he really hardly ever throws up. So I’m happy about that.
Samuel had therapy and 2 chiropractic appointments this week. The chiropractor says his back is slightly twisted to one side and he has been able to adjust him everytime we have taken him. I think it’s very good for him. He wasn’t as cooperative during his massage this week. I certainly wished I could have taken his place :)! Who in the world would wiggle during a massage?!
We had a busy day today. Samuel’s class at school went to the local Celebration Park. I went with him while Tom watched Nathan. (Thanks, dad!) So Samuel got to ride the school bus for the first time ever! We’ve been waiting for his wheelchair so he could ride the bus in it because the bus seats are too close together to allow him enough leg room to ride in a car seat on the bus. Samuel was unhappy waiting for the other kids to get on the bus. But the second the bus started moving, he was happy as could be and eventually fell sound asleep.
Once we got to the indoor park, Samuel went down the slide and climbed through the soft playground with me. He also rode the carosel and seemed to like that. He watched all the kids eat pizza and pop and then we headed back out onto the bus. Again, he didn’t like waiting for all the kids to get on the bus, but he loved the ride once we were moving and he fell fast asleep on the way home.
The rest of today was spent driving down to Salt Lake for a pump refill. Amazingly enough, the doctor’s office called us late last week to see if we really wanted to keep out pump appointment because they had down that our refill date was April 28th, not December 28th. I told them I was certain his refill date was the end of December and that they really should have been able to tell that because if it was in April, he would have gone 6 months without a refill and there are very few patients with these pumps who can go that long between appointments. Just a little scary, though, seeing as how missing an appointment and letting his pump run out can cause extreme withdrawal symptoms - including death. And we know from the experience of others that Primary’s isn’t that reliable on ensuring patient’s pumps get filled on time. Scary…
Christmas shopping is done, though those in our family that live far away will probably see their gifts AFTER Christmas. Hopefully, they’ll understand. Tom and I did most of the shopping one evening from about 6 pm until 1 am while Grandma Bird babysat and then I spent another night on the internet from about 10 pm until 5 am finishing up. It’s not that we bought all that much, it’s just that it’s hard to find just the right thing with limited time and limited resources in our smaller community. It’s the only time of year I wish we lived in a bigger community! So, we’ll spend this week wrapping presents and attending a few Christmas parties and we plan on taking Samuel and the kids sledding one day during Christmas break. We’re hoping Samuel will really enjoy that. We also have built Samuel a slide that has hand and foot holds in it so we can hopefully teach him to propel himself forward on it. That, along with teaching him to eat, will be our next big goals over the next few months. So please pray hard that Samuel will learn to eat and crawl soon.Over the last week, I’ve met 2 children with cerebral palsy who have been so fun to interact with. One was a girl in our stake who we saw at the store the other night. She is 20 years old and was there shopping with her mom. She drives a power wheelchair. She doesn’t speak, but she signs a little and she clearly understood everything we said to her and responded appropriately. She was extremely happy and showed off when we asked her to show us her power chair by driving up and down the aisles with much better control that I would have in that chair. She was just as wiggly as Samuel and as smiley. It was fun to see.
Then today, I met a boy at Primary’s. I would guess he was about 7 or 8 years old. He also had and drove a power chair. He spoke, but I couldn’t understand him. His mother could, though. And when I would ask him questions he would nod his head and smile appropriately. He was happy and obviously smart. It was encouraging to say the least.
Well, that’s the update for this week. Have a Merry Christmas! And we’ll have lots to update next week.
Love,
The Jewkes
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