Speaking of sleeping, Samuel hasn’t been sleeping very well for the past week. He falls asleep fine on his own at nights, but he only sleeps about 6 hours and then he is up on and off about every hour crying and upset. I think he is mostly upset that he is in his crib and bored. But I don’t want to get him in the habit of being up and doing things in the middle of the night. I’m hoping it passes soon, though, because it is wearing me out :-).

Samuel is finally working on eating things by mouth. He has gotten MUCH better at allowing things in his mouth, though he is very picky what he will and will not allow. So far, he loves bananas, apple sauce and chocolate chip cookies. I put small pieces in his mouth and he is starting to move them to the back of his throat and then swallow them. It’s a slow process, but he’s doing it! Today, I put about 4 bites of banana in his mouth and watched him work with them and then swallow them. I didn’t get any of it back!

Samuel has also been arching his back more than the past few weeks, but it doesn’t seem to be that he is posturing more or that his muscles are tightening. It seems to me that he is trying to roll over - especially because when I roll him on his stomach, he calms down. He is getting much better head control when he is sitting on our laps and he is even gaining some head control when he is laying on his stomach. I am trying to teach him to use his hands and arms to push himself up when he is on his stomach, but I don’t think he gets it quite yet. Hopefully, that will come.

I came home early this week for Ben’s birthday and it’s been nice being home with the boys and Tom. It will be good to have this week of Thanksgiving and spend a few extra days with them. It’s really hard to be away from them anymore.

Well, that’s about it for this week. I know that everyone that sees Samuel says they can see a lot of change in him. I think it’s much harder for me to see it because I am with him every day. But we are all hanging in there and if I could say anything about Samuel, it’s that he’s determined, got a mind of his own, and has unlimited energy. I know he can do this. It’s just going to be A LOT of work. I sure wish I could do it for him! But I am grateful everyday that I can look at him and think what a cute boy he is and plant kisses on his little cheeks. Hopefully, there will be a day when I have to chase him to get those kisses!

Keep up the prayers and faith! We need them now more than ever!

Love,
Teresa, Tom, Samuel & Boys

We also went up to see an orthopedist on Thursday. He checked Samuel over and had an x-ray of his hips and left shoulder taken to make sure that they are all still in place. They all looked fine. With a lot of muscle tone, hips and other joints can tend to slip out of place because of the stress put on them. Hopefully, Samuel’s tone will subside long before any of that becomes a problem. We did talk to him about the option of using more botox on Samuel - on the muscles in his inner thigh. I will ask our rehab doctor about that also. He keeps his legs pretty straight and his knees locked tight together most of the time and a little botox might really loosen that up.

On Friday, we went to have his pump filled again. We didn’t change the dose at all even though it might help with the tightness in his legs. We didn’t want to see his start retaining urine again, so we didn’t dare up the dose. Hopefully, we made the right decision. It’s just so difficult to cath him all time and we haven’t had to cath him hardly at all the last few weeks. I hate to go back to that.

Otherwise, Samuel is doing better each day. They are slow baby steps, but they are steps the same. He is continuing to track and hear better and use his right arm. He has also started turning his head to the left. For the last 2 months, he has kept his head constantly turned to the right and nestled down in his shoulder. He is now turning his head to the left often every day. And when he does turn his head either midline or left, the tightness in his entire body reduces. It’s a GREAT change to see.

Samuel also continues to be very vocal. He will almost always goo and coo back at us when we talk to him. It has been nice to wake up some mornings to him making pleasant sounds in his crib instead of grunting and groaning. And when he does wake in the mornings, the first thing he wants is out of his crib. The moment I take him out and lay him on the floor, he is much happier.

Samuel’s favorite things to do lately are to have the ABC’s recited to him or to watch his Baby Einstein movies. He is also getting MUCH better at riding in the car. Today on the trip from Murray to Orem, he didn’t cry once even though he was wide awake. It was a miracle! Especially because he cried through most of the hyperbaric treatment. And, he kindly messed his diaper about 7 minutes into the treatment leaving him and I a wonderful hour and a half of wonderful smells inside the chamber! (Ugh!) We keep teasing the chamber tech that we are training him for the future by leaving him little spit up or diaper leak messes since he doesn’t have any kids of his own yet. He is a VERY good sport!

Tom and the kids are doing well. It’s hard having their mom and little brother gone each week and I can see it slowly taking its toll on all of us. I know I an tired and I know they complain more and more each time we leave again. But we are seeing progress with Samuel and it won’t be long until we’re home again.

Thanks again for all your prayers and support. Keep them up. I know a few of you have called me and I haven’t had a chance to get back with you yet. I will. Things are just hectic. But I absolutely appreciate the calls and concern! We love you all!

Love,
The Jewkes

The next morning, we hurried up to Primary Childrens hospital only to find that his pump was NOT alarming. But amazingly enough, none of the doctors or nurses there had ever heard his model of pump alarm. So they were “pretty sure” the sound it was making was just the sound it was “supposed” to make. Well, I called the maker of his pump and they assured me that his pump does make a “ticking” sound as it is working and that we would most assuredly hear the alarm if it went off unless we were in a really noisy room. They even played the sounds of the alarm over the phone for me so I would know how it sounds in the future. Crazy the doctors didn’t know all that, huh? Oh, well.

I worked Samuel’s tranxene down all week and last night I put him back to his regular dose because he was so miserable. I have emailed his doctor to ask for ideas on how to get him off the tranxene. I don’t know if he needs it or if he is just having severe withdrawals when I try to take him off it. It is very habit forming.

He is much calmer today and getting more and more aware as the days go on. He is babbling more and more and his right arm is fun to watch. I put his Smokey Bear hat on him today and he would reach up and knock it off his head. Then when I would put it in front of him, he would reach out and touch it. Mind you, they aren’t extremely controlled movements. But they are purposeful movements for sure! I have even seen him “grab” at things with his right hand. He can’t pick them up yet, but he is trying.

I am also sure that Samuel can hear. There is a possibility with a near drowning that although the ears work, the messages don’t make it to the brain. But Tom has had a cough all weekend and Samuel will visably start everytime Tom coughs - even if Tom isn’t holding him. Also, Samuel was laying on my bed today and I was in the bathroom getting ready. I looked out the bathroom door and he wasn’t looking at me. So I said, “Samuel, where’s mama?” And he turned his head a little and looked right at me. So I know he heard me!

His vision keeps improving each day. I now see him jump a little and close one eye if my hand is passing him and gets too close. He also is sleeping often without his oxygen. He made it most of last night without it. When he does have it, I only set it at 1/8 a liter. That’s the lowest setting the machine has. Samuel’s head control is slowly improving. He can hold his head up on his own for a few seconds at a time. And he can push on the floor with his arms and lift up his head for about that long also.

So thing are moving along - slow, but sure. We are excited to see even the smallest changes in Samuel. I don’t know if the changes are from the HBOT or just Samuel’s own progression. But at this point, who cares?

Keep up the prayers and faith!

Love,
The Jewkes