Archive for August, 2007

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…

We also had an appointment with the Follow-Up Nutrition Clinic at Primary Childrens. They reviewed Samuel’s diet, height, weight, etc to ensure he is getting proper nutrition. I think I was a bit of a challenge for them because I am feeding him a homemade diet. But they were very positive with me and very helpful and told me a few things to add to his diet to ensure he’s getting all he needs. It turned out to be a very worthwhile appointment. I was really worried they would discourage me from feeding him “real” food, but they didn’t at all. I LOVE being accepted even if you aren’t with the “main-stream” medicine. So, I’m glad we went.

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!

At Boondocks, we got to play minature golf and video games. Samuel got to ride on the go carts and on the bumper boats. He seemed to enjoy them, but was tired most of the day and took a nice nap in the stroller. I think we may have wore him out the day before. And that day, we did a bunch of school shopping too and had dinner at Nana and Papa’s house in Orem. It was a busy day! The next day, we drove back just in time for Samuel to meet with his physical therapist and get his walker ordered. So, we are on our way there. Well, that’s pretty much the story for now. School starts for Samuel on Monday and I think he’ll be excited to go. And hopefully, we’ll be able to really buckle down with therapy and get him crawling soon. We’re also busy keeping track of all our online friends who struggle through so many of the same things we do. I would like to ask you all to pray for Parker - a little boy who is struggling with heart problems, internal bleeding, a new trache and so much more. He is a sweet little boy who was next to Samuel in the PICU over 2 years ago. And pray for little Corbin who almost choked to death about the same time as Samuel’s accident that his family will get the support they need to get him the therapy he needs. And I want to thank the PONDS (Parents of Near Drowns) group this week for taking the time to specifically pray for our little Samuel!

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!

Posted by admin @ 9:29 pm | 4 Comments

An overdue update…

August 12, 2007 | Updates

It’s been 2 1/2 weeks since I posted. Sorry for that, but time has been flying by. Samuel is doing well. The only problem, really, is that he is still so wiggly. We have to be really careful with him because he hurts himself without realizing it. Yesterday, we went to Bear Lake for the day. On the way back, I put him in his car seat. Two hours later when I took him out, he had a HUGE bruise on the outside of his right upper arm. I couldn’t figure out what had caused it. So I pulled back the cover on the side of he car seat and underneath was styrofoam padding with DENTS in it! He had hit it so hard so many times with his arm that there were dents in it. Poor kid! He also had a huge bruise on his back a week ago just above the spot where his baclofen pump catheter goes into his spine. That freaked me out because it was swollen, too. And I still haven’t been able to figure out what caused it. Last night, I clipped all his fingernails way down because he is digging into his hands and neck with them. And I have noticed that he is holding his hands closed tighter than usual, so his fingers are peeling. And his teeth grinding it back, which I am not happy about. I’m not real sure what is causing it all. I’m just hoping it will settle down a bit with time.

The good news is, he is SO aware! I got him off the neurontin and the tranxene and now he is just taking the keppra twice a day. He is getting goat’s milk and other homemade food during the day and pediatric compleat at night and a daily vitamin. He is NOT lethargic anymore, that’s for sure. He has a lot more control of his hands than I remember him having a few months ago. He is pulling out his tube nearly every day (which stinks) and it is nearly impossible to get it back in (even when I’m sitting on him)! He can get his hands up to his face so quickly and get ahold of the tube so fast, that I don’t have a chance. He can also hit his switches quickly and he seems to be trying to grab for things. In fact, he is sometimes bringing his hands to midline to touch things, which I haven’t seen before.

He is also DETERMINED once again to crawl. I know you won’t believe me, but several times over the past few weeks, we have walked into his room and he has been on his stomach with his knees underneath him and his arms straight holding himself in sort of a frog sitting position. When he does it, he even has good head control. The first time he did it, Wesley nearly passed out. He said it was the weirdest thing because he turned around and there was Samuel sitting up and looking perfectly normal just looking at him! I’ve seem him do it a few times since and he can do it very well with a little help. He is definitely determined. And I’m thinking that the hyperbarics we did a few months ago must have made a difference, but because his diet was causing him to feel so tired, he couldn’t do anything about it.

Also, as soon as I upped his calories, Samuel put on a few pounds. So, he now is fluctuating between 31 and 33 pounds. That’s good news. The bad news is, I was unintentionally starving him even though I was feeding him as many calories as the doctors had told me. Bummer. Oh, and, Samuel has started putting his legs around us and laying his head on our shoulder when we carry him. It varies how long he does it for - sometimes just for a few seconds, sometimes for 20 minutes - but either way, it is much easier to carry him when he’s cooperating! And, he is getting better and better at taking steps when we hold him up. We got fitted for his braces, so we will work on the walker next. And we should see his new bathchair tomorrow. Yippee!

Last of all, Samuel just seems to know what is going on more. Last night as I was trying to put in his feeding tube, he was really giving me hassle. So his dad came up to talk to him about it. I was sitting at Samuel’s feet and Tom was sitting at his side. He would look at Tom as he would begin to talk and then his eyes would wander over to me. Tom would say, “Look at Daddy” and Samuel would look back. So Tom would start up again and Samuel’s eyes would wander over to me. So Tom would say again, “Look at Daddy” and Samuel’s eyes would instantly look back until Tom start talking again and then his eyes would wander again. Samuel responded by looking back at Daddy about 10 different times. It was the first time I have ever seen him respond that quickly to a command. It was cute!

So, we’re just working on getting ready for school. I can’t believe how fast the summer has gone. It is my favorite time of year. But we are ready to buckle back down for another year. By the end of September, we will be trying a new herbal therapy (g-therapy). I’m hoping to see some improvements from that. And we need to get back to hyperbarics for a few more treatments within the next few months. And I need to do a little more praying about it, but I’m pretty convinced we need to try stem cells in China. I’d prefer to wait for an opportunity here in the states, but even if one comes about in the next few year (which is unlikely), unless it is a trial (which is still unlikely - especially one for children), it will be too expensive for us to try anyway. But fundraising for China is going to be a huge undertaking, so I need to be sure we are commited before we begin. Pray that we’ll know the right thing to do!

Thanks for keeping up on us and keep praying!