Last Summer Fling - New Friends and Lots of Fun
August 24, 2007 | Updates
It’s been another busy 2 weeks. Sometimes, I have nothing to post, and sometimes I could post everyday (if I had the time)! We had a few appointments over the last few weeks. One was with the NACD (National Association for Child Development) in Ogden. It went OK. We really hadn’t been able to do hardly any of Samuel’s home therapy over the last 3 months because of the time we spent at Now I Can and doing hyperbarics and then all the trouble we had with his seizures. But we will buckle down again now that school has started. We are really going to hit the crawling again. I know Samuel has it in him, it is just going to take a lot of work. In fact, his Occupational Therapist told me the other day that HE thinks Samuel is going to learn to crawl - eventually. WOW, it’s always nice to have a therapist give you good news like that! We caught him trying to get on all fours in the picture below…
The doctor there also indicated that Samuel is now a candidate for a g-tube. I spoke with him at length about it and feel good about doing it to rid Samuel of the stress of the feeding tube in his nose. But there was one question I thought of later that I need answered. The doctor talked about putting the g-tube just below the center of Samuel’s ribs. The button wouldn’t stick up much, so I don’t think it would bother him when he’s on his stomach and I don’t think he would be able to grab it and pull it out. BUT, when he’s being fed, I have to put the end of the feeding bag into the g-tube and thinking about it, it seems that the part of the feeding bag I plug into the feeding tube would stick straight up out of Samuel’s stomach about 2 inches. There is no way that would work because he would knock it out in 5 seconds with his flailing arms. Maybe all you g-tube experts out there can tell me if I’m wrong or if there is some way around that problem.
We also got Samuel’s pump reduced another 30 micrograms. Otherwise, we’ve just been playing. We went to grandma’s house in Orem for a few days. One day we spent at the zoo and the other we spent at Boondocks. The day at the zoo was fun because we happened to go on the day that the Signing Time cast was performing there. Samuel really loved that and we met some neat friends. The little girl sitting next to Samuel during the show was the daughter of Rachael Coleman (the star of Signing Time). Her name is Lucy and she has hydrocephalis and cerebral palsy. Samuel was wiggling and kept bumping her arm and she thought he was trying to hold her hand. So she would reach over and hold his hand until he would wiggle away. They held hands for quite a while during the show. It was SO cute! (I caught them in a picture below.) And, apparently, she is going into the 2nd grade and is mainstream in school which means that even though she has cerebral palsy and is in a wheelchair, she is as brilliant as any other child her age. She was adorable. We also met another little boy who stole our hearts. He was an 18 month old little boy with cerebral palsy. He was SO cute, I can’t even explain it. I spoke to his mom a bit about hyperbarics and hope she takes it to heart because, as you all know, I am a BIG advocate of it!
We are so blessed by all who love and help us. Keep praying! It’s working!
Love,
The Jewkes
P.S. I had to include my favorite picture from this week. It’s Grandma leaning against the fence at the zoo - obviously oblivious to the sign she is right next to!
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August 25th, 2007 at 6:11 am, Liz and Ashleigh Says:
It’s lovely to hear about Samuels progress. He looks so well and such a happy little boy.
August 25th, 2007 at 6:15 am, Caradie & Corbin Says:
Thank you so much for saying something more about Corbin.
Love caradie
August 28th, 2007 at 9:27 pm, Natalie Says:
Ok, so I have to say that meeting the signing time crew is awesome! I would totally love to do that someday. We are big fans of the videos around here. wow! I didn’t know that Lucy had hydrocephalus as well as the cerebral palsy. She definitely gives a lot of us hope for the future! It sounds like Samuel is doing good. I still am amazed at your proactiveness (is that a word?) with all of his treatments and stuff. I can barely do the minimum that is required and you are out looking for stuff to help him. you are truly an inspiration to me. With the g-tube, it’s not too bad. We have the mickey button and so it has an extension that hooks directly onto the button and then the feed bag ‘plugs’ into that. There have been times that it has come out, or the medicine port comes open and the food leaks out. And it’s very rarely ever because it has been pulled on by Brea or the baby. Mostly it happens if she is laying on it and I pull the tube accidentally or something! leave it to me! But as far as the convenience of a g-tube, it is awesome. It’s hidden and it doesn’t come out as easily as an n-g tube. Anyway, there are my two cents! Let me know what you decide! Love ya.
Nat
August 31st, 2007 at 9:39 pm, Caradie & Corbin Says:
Hi Teresa,
I don’t know if you remember on PONDs but I used to HATE the g-tube because I always thought it hurt him while he was on his tummy but honestly I’m so glad Corb still has his, it never hurts him anymore & it’s so easy & his has never came out & man has he pulled hard on it a few times. Like Nat said it’s hidden so Samual wouldn’t have access to it like he does with the n-g tube. I personally never really had to learn about the n-g tube because Corb got his g-tube so soon after his accident but I really think you will like the g-tube so much better & Samual will too.
Caradie