The only change I’ve really seen in Samuel since we started the treatments is that he seems to be more verbal. That doesn’t mean that he is talking, but he is babbling and more apt to let me know if he is upset or wants something. He just mostly seems to be moving his mouth more and making more and different sounds with it. We’ll see what another week of treatments brings.

Otherwise, he is much the same as the prior week. His right arm is really no longer spastic at all. His left arm is still pretty tight. His back arching is nearly gone unless he is upset and then he does it a bit. His legs don’t move much and are still pretty tight, but his ankles seem to be keeping their range just fine if he wears his feet braces at night. He still keeps his head to the right most of the time. But lately, if you move it to the left, he will keep it there or at least midline for a few minutes before moving it back. His tracking with his eyes has gotten really good. He can track horizontally, vertically and even diagonally. And best of all, Samuel is still enjoying being held. That is the most wonderful thing since it has been so long since we could hold him and comfort him.

Samuel got a stander this week and a tumble form chair. The stander is used to put weight on his lower body. Our bodies were meant to be weight bearing, and if he doesn’t stand in the stander at least sometimes, his bones and joints won’t grow correctly. His tumble form chair just looks like a small banana chair with straps to hold him in. It will be good for feeding him (when he can eat) and just to put him in when we can’t hold him and he wants to be sitting up.

The therapists again said he looks so much better than when we first brought him home. And even though we reduced his baclofen 10 days ago, they don’t see increase in his muscle tightness. He is also now off his stool softener and his clonadine. I am working down his tranxene, too. I took him off his prevacid to see if he would get fewer stomach aches and it seems to have helped. He is not arching like before and may not have any reflux at all, so there probably isn’t even a need for him to be taking the prevacid. That just leaves him on the tranxene (which we’re working down), the keppra, a multivitamin and suppositories and melatonin when needed. I’d like to someday soon see him off everything.

We are also still working on a feeding solution that doesn’t rely totally on Pediasure. Our doctor feels that Pediasure with a multivitamin has all the nutrition he needs. But I breast fed my babies because I didn’t believe they could get the best nutrition from a can, and I still feel that way. There are ways to feed him REAL food and still get him the vitamins and nutrition he needs. So we’re working on getting that figured out with a nutritionist.

Finally, Samuel is getting better at moving his right arm in a purposeful way. He doesn’t have a lot of control over it, but he certainly makes a great effort to accomplish things with it.

Keep up the prayers and faith! Good things come to those who are patient!

Love,
The Jewkes

Well, we’ll be off for another treatment tomorrow. Samuel is urinating on his own (even at night the past few nights). That’s our most exciting news! But he seems to have had a stomach ache the past few days and has been irritable. Hopefully, that will pass soon.

Thanks for all the prayers! Keep them coming. I know I did a lot of praying today that I wouldn’t freak out in the chamber! They obviously paid off!

Love you all,

The Jewkes

The therapists were all pleasantly surprised at how much progress Samuel made in the few weeks they didn’t see him. They commented that the last time they were here they couldn’t get Samuel to sit up without a real fight and an ensuing scene. This time, he almost seemed to enjoy being held and playing with them. I have noticed that also the last few days or so. Suddenly, Samuel seems to like to be held! It’s wonderful! All along, he hasn’t really wanted to be held or touched much. Now, he seems to like sitting up and especially if he is on someone’s lap that he knows.

Another thing the therapists noticed was that he was moving his right arm in purposeful ways. They would put a toy on his lap and if he noticed they had, he would quickly proceed to knock it off! It was pretty cool. We have also noticed that if you place anything on his right side when he is laying on the floor his right arm will really get moving as he tries to hit it with his hand. He doesn’t have a lot of control, but it’s pretty clear he’s trying. In addition, he will stick out his tongue when asked and close his eyes. At first, we thought it was just coincidence, but it’s happened enough times now that we’re sure it’s not.

Samuel is also sleeping better at night and he takes a morning nap on his own everyday without any medications. He takes that little nap like clockwork. It’s helping me keep my sanity a little as I can actually get a few things done while he’s napping. Nighttimes have gotten better because I finally figured out that he’s afraid of the dark. Now I leave the hall light on and he sleeps much better and is less upset if he wakes during the night. No wonder he slept better for his nurses than he ever slept for me!

Samuel is also urinating better and started having several bowel movements a day on his own. Before, it would take a suppository for any bowel movements to occur. Seems silly, but we’re pretty excited. He’s also been vocalizing a lot more than in the past few months. He just makes different sounds and really seems to be trying to find a way to communicate. It’s cute.

Well, we’re pretty excited to start the hyperbaric treatments. Our first one is Monday at 1 pm. We’ll go everyday this week. Wish us luck. It’ll be a good opportunity for Samuel and I to just hang out together for an hour each day. And, hopefully, the car rides won’t be too much for him.

Keep the little guy in your prayers. We had a lesson today in church on the tender mercies of the Lord. (I got to go because my dad, step mom and sister were visiting and were nice enough to babysit.) It was interesting to sit and look back on the last few months and see how flooded our lives have been with tender mercies of the Lord. But then I sadly realized how many of His mercies I have probably missed in my life before this happened because I wasn’t paying attention. So pay attention! You’ll see them everywhere!

Love,
The Jewkes

We next went to visit the hyperbaric clinic where Samuel will be receiving his HBOT treatments. We were there for about 2 hours as they showed us around and explained the treatments and machinery to us. Tom and Samuel took a trial run in one of the chambers to see if Samuel would regulate the pressure in his ears OK. He did fine. He has this little “deal” going where he opens his mouth really wide all the time. It drives me crazy, but it was perfect for keeping his ears regulated during the test run. So I guess I’ll stop complaining about that little habit for a while.

We scheduled to start his treatments this coming Monday and will do one treatment a day - Monday through Friday - for at least the next eight weeks. There is no way to know how much it will help him or if it will help at all. But there are enough encouraging stories of others who have used it for us to want to give it a try. I guess my biggest worry is I’m a little clostraphobic and those chambers are pretty small! But I’m sure I’ll be fine because I’ll be too busy worrying about Samuel to worry about that.

I’ll post more in a few days. Right now, I’m really tired. And Samuel is snoozing away, so I’m headed there with him!

Thanks for all the prayers. Just keep up on them. No matter what happens, it is all for the best. And we have felt time and time again that this is meant to be a long trial. And we also know that great things only happen after our faith is tried. So don’t give up on little Samuel. He’s getting better - slow, but sure.

Thanks again!

Love,
The Jewkes

Also, our NACD program arrived. I had to buy some supplies to get started and we are slowly working to get it done each day. The program takes about 3 hours to accomplish each time and we can do it up to 4 times a day. I doubt we’ll ever make it to that point. But we’re going to shoot for at least twice a day, if not three times. I love it though. It’s a lot of work, but it gives us something to do with him ALL day, which is wonderful.

We are slowly working on coming down on his meds. We are down to 3 doses of traxene each day instead of 4; 1 1/2 doses of clonadine instead of 2; 360 ml of keppra instead of 400 and 1/2 the dose of miralax he was previously on. It’s a slow process, but I don’t see any adverse reactions so far. He is usually a little irritable for a day or two when I come down on a medication, but then he settles right back down and we’re good again. I’d love to get rid of all of them! But we’ll just have to see how he does.

I am also looking into getting with a nutritionalist and feeding Samuel some things through his tube in addition to his Pediasure. It just doesn’t seem right to never be giving him fresh fruits or vegetables or “real” food. It’s like saying, “Well, your kid is taking a multivitamin each day, so don’t worry about ever feeding him any fruits or vegetables.” We’ll see. But I think it may help with his digestion and weight gain. (I’m concerned he may be loosing some weight.)

We had a few difficulties this week. We took Samuel to the doctor just to make sure he wasn’t getting pneumonia. He was spitting up yellow and green bile and running a slight fever. But his lungs and ears and throat all looked fine, and the spitting up has subsided. Then I noticed his stomach was a little distended a few nights ago and his stools had a lot of mucous and some white sand like specs in them. I called the doctor and he said to just watch him. It seems to have gone away, and I’m sure most of it is caused by his medications, his diet, and his inability to get up and move about much. We’re working on all of that as fast as we can, so hopefully, it will help other things along.

Samuel is looking around more and more. He is even beginning to turn his head to the left (which is hard for him) if he wants to see something or if he is tracking something. He is also sleeping much better at night despite the reduction in his medications. And he is sleeping more during the day, too, which makes me think he’s getting bored so we’ll start working those therapies right up! Oh, and I don’t put his arm braces on him at night anymore because he sleeps with his arms straighter than the braces are. YEAH!

This week, we see his doctor at Primary Childrens on Thursday and meet with the doctor for Hyperbaric Treatments. I’m hoping that next week we can head down to Salt Lake and start those treatments. It will be 8 long weeks of being gone most weekdays, but Samuel and I will get lots and lots of time for therapy in! As I find out more and finalize our plans, I’ll let everyone know what help we could use while we are there or what help the rest of the family here may need.

Keep praying, it’s working!

Love,
The Jewkes