Climbing back up the hill…
May 6, 2007 | Updates
This week has been better. Thank goodness! Samuel still had a rough week, but not as bad as last week. He went to school for a few hours on both Wednesday and Thursday. On Friday, he had cranial sacral therapy and did really well and then we went to occupational therapy and he did very well considering how upset he has been lately. I do not necessarily think that the new seizure medication is working. Samuel still has many seizures each day. But I have been medicating him more to ensure he sleeps enough and that has helped tremendously. We will be able to raise the dose of the new seizure med in another week and can even go up from there. So just because it isn’t working now doesn’t mean it won’t. We just have to go up on the dose slowly.
I also pulled way back on the change over in Samuel’s diet. I have slowly weaned him back onto the new diet over the past 2 weeks. We finally got him up to the full new diet yesterday. I’m hoping this diet will help his body become healthier and help him gain a little weight. It may also help with his seizures since it is a low carbohydrate, high fat diet. But only time will tell that. He weighed in yesterday at a whopping 29 lbs. I’m really hoping that we can get a few more pounds on him because he looks so skinny!
I’ve spent the entire week trying to set up some new therapy for Samuel. We will start hyperbaric treatments again on Monday. We will go for 2 weeks, maybe 3. And we will hopefully start an intensive therapy program on Wednesday and go to it for at least 3 weeks. It is down in Orem and hyperbarics is in Murray, so we will be on the road a lot. We will probably stay as much as possible with my grandma in Orem so we don’t have to drive home each day. The only down side is Samuel will have to miss a lot of school, which I hate to do because he loves it so much. But I really think this will be good for him and I’m not sure we could swing it all once the kids are all out of school. So we’ll just have to do it now. The good news is that Samuel has school during part of the summer, so that will make it a little better.
The therapy we are trying involves suit therapy, which is putting a funny little suit on Samuel to give his body a lot of input as he does therapy. As I spoke with his occupational therapist this week and his physical therapist last week, we all agreed that Samuel is moving purposefully and he is a very determined little guy. But he doesn’t appear to have any idea where his body is in space. This suit will give him that input and, we hope, help him learn to crawl. That is my goal for him these next 3 weeks - to army crawl. He is determined enough! So let’s pray he does it!
We got to go to soccer games this week and I got some cute pictures of Samuel. And this Monday, we will attend the ground breaking for a new park in River Heights dedicated to a little boy who drowned recently at Lake Powell. Tom happened to get an email about the park and forwarded it to me. As I watched the video on their website, I realized that I knew the little boy’s dad. We went to college together at USU. I emailed him and told him who I was and about Samuel. This little boy’s dad donated a fence picket to Samuel that will be engraved with his new website address and will be one of hundreds of fence pickets around the park. We also donated a little money and were able to purchase a pathway paver stone that will have Samuel’s website address on it along with the words “Near Drown ‘05″ and we bought another paver with the names of all our kids on it. It’s going to be a great park and I hope one day I will be able to take Samuel there and watch him run and play and jump up and down on the little paver marking his journey. Wouldn’t that be wonderful :)!
So, this week will be hectic, but hopefully lots of good will come from it. Keep praying that we will be able to control Samuel’s seizures and pray hard these next few weeks that he will be able to endure all the therapy and hyperbarics and that he will learn to CRAWL!
Thanks so much!
Love,
The Jewkes
RSS feed for comments on this post.
TrackBack URI
May 17th, 2007 at 2:10 am, Kehau Egdamin Says:
Thank you for your comment! I came to see your website after I read the comment and was blown away by your story. It’s amazing! Samuel is a miracle! Praise God for all the wonderful progress in Samuel! He looks so good too! What a handsome little guy! And so happy! We also want to do those therapies that you are doing with Samuel. But gosh, it’s really costly isn’t it…We will pray hard for you that Samuel will learn to crawl and will do well with his therapies. He definitely is a fighter! I intend to keep up with Samuel’s story and hopefully keep in touch with you also! God Bless!