In one of these pictures, you’ll be able to see that his little body is kind of twisted now, even when he isn’t posturing as much… and you’ll see the little cast on his arm, which is to keep his arm from twisting too much. Oh, and you’ll see one of Tom’s better poses!

We are grateful for the positive attitude that Tom,Teresa, and their boys, Tanner, Wes and Ben have through all this. You know… they have a LOT of reason for such positive attitudes… One BIG reason is all the WONDERFUL, UNBELIEVEABLE SUPPORT they are receiving from SO MANY FRIENDS AND FAMILY!!! AND EVEN PEOPLE THEY DON’T KNOW!!! Every time we turn around we hear about more sweet things people are doing for them!!! Someone said that it’s a real tribute to them… and I immediately responded “Yes, it is… but it’s even more a tribute to the people in this community!!! and throughout Utah!!! And that is the truth!!!

Of course, another reason the have for being so positive through all this is that THE LORD IS TRULY BLESSING THEM!!! AND THEY TRULY FEEL IT!!! Thank you again everyone, and to our Heavenly Father for all you are doing!!! Love, from Grampa and Gramma Jewkes

Samuel slept pretty well from 11 pm until 5 am, but they did have to give him medication to keep him asleep every few hours. Then he slept from about 8 am until 11 am and then took a nap from about 1 pm to 3 pm. He just now fell asleep, hopefully for the night. It’s 9 pm.

But when he was awake today, he was so wide awake and his posturing was at times better than usual. His baclefin pump was reduced yesterday from 1350 to 1150, but it hasn’t seemed to make a difference.

So today he and I talked (well, at least I did), read books and even go on a mat on the floor and played with his favorite toys. It’s quite a struggled to get him out of his posturing and into a sitting position and then hold him there while taking his hand and reaching it out to help him grab a toy. Our physical therapist calls it “octopus therapy”. But we did it, and he seemed to enjoy it. And then I put him in his wheelchair and we went for a walk!

I’ve been nervous to take him for walks and leave the nurses behind. But we had both had enough of the hospital room. (I did have them put an oxygen and heart monitor on him so I would at least have some indication of how he was doing.) Then we went for a ride.

It’s pretty sad that it was so much fun, but it was. We rode down to the first floor to see the waterfall they have there. Samuel could see the reflection of it in the mirror on the ceiling. He loved it. He looked and looked at it no matter which way I turned his chair. Then we went up to the third floor and out onto the patio. Samuel hasn’t been outside for a month and I could tell he liked it. We sat out there until the wind started blowing and then we headed back to his room. His stats were great the whole time. His heart rate even went down from its normal 140 to 100 while we were outside. It was fun.

When we got back to the room, I watched a movie while I held him in my arms. He lay there for a few hours and just looked around and was pretty relaxed. He still postured, but not as bad as usual. It was really nice.

Today was also the first day that I tried to turn his head so he could see each nurse that came in. He looked at all of them and seemed interested. Today is the best I’ve seen him as far as having control over his gaze. I even asked him to try and say a few words today and he definitely tried by moving his mouth in funny different ways. It wasn’t even close to talking, but it was nice to see him try.

Last of all, today I found that if I show him something and ask him if he wants to hold it, he will start directly at it. Then he will keep his eyes on it and I take his hand and reach it out to hold the object. The he will sit and stare at it like he knows that he is holding it. He stays calm for a minute or so and just stares. It’s a good sign, I think.

Hopefully we’ll have more and more days like this one. I can see him changing everyday. Baby steps, right? Love you all!

Tom, Teresa & Samuel

At 10 am, Tom called back to let me know that something was wrong. They had given Samuel a small dose of adavan (.4 mg) and he had suddenly become extremely sedated. His heart rate had dropped to about 40 beats per minute and his respiratory rate was way down. His oxygen had also fallen and so they had increased the rate of oxygen he was receiving. Our nurse refused to leave his side and had other nurses take on her other patients. IV team showed up and placed an IV in both feet just in case they needed quick access to his veins. And one of Samuel’s doctors, Dr. Colliver, sat by Samuel’s bed for 2 hours while he slept.

At first, he couldn’t be aroused. He didn’t hardly flinch when the IV’s went in. They did an EKG of his heart and everything looked fine. They did a lumbar puncture and took fluid from his spine to check for infection - nothing. And then he started to react to movement and touch - not by waking up, but by increasing his heart rate. And once the 2 hours were up, he was back to the way he has been for the last week.

The final verdict, who knows. Just some fluke thing where the adavan and other medications suddenly caught up with him and caused extreme sedation. They stopped every medication that can cause sedation - which were most of the ones he was getting. And they didn’t restart them until this afternoon. They stopped adavan entirely. And they restarted him on smaller doses of many of the medications he is on. They also reduced his pump to 1150 and sent a sample of his lumbar puncture to be tested to see if the entire 1150 is reaching his spine each day. (That test takes 2-3 weeks to get back, though, so the results won’t help us much now.)

So Samuel got a pretty good night’s rest last night sleeping from 9 pm until about 7 am with only a few times of waking. Then he got a GREAT nap from about 10 am to 12 pm. Other than that, he has been awake the rest of the day - it is now nearly 11 pm. They are trying some ambien right this moment to see if that will help him sleep. It is not supposed to suppress respiration or heart rate, so it should be safe to give him. Let’s hope so. We want him to sleep, but not that deep.

We haven’t seen any more signs of the sleep apnea since we stopped giving tranzene right before he falls to sleep. And one last quick note. One of our doctors suggested that we may be able to take Samuel home. I was not impressed with South Davis and do not feel right now like that is the best thing for Samuel. The nurse to patient ratio is about 1 nurse to 6-8 patients. I just don’t think I can do that with him. This doctor, however, feels that we may be able to take enough equipment home, give him the medications ourselves, watch him closely enough and get a nurse to sit with him at nights so that we can take him home with us. More later…

Love,
Tom, Teresa & Samuel

Love,
Tom, Teresa, Tanner, Wesley, Ben & Samuel

Samuel’s physical therapists came to get him at about noon and took him down for another work out. He had slept until 4 am this morning and hadn’t been back to sleep since. That’s not too bad - about 7 1/2 hours of sleep. But he was pretty worn out when we got back. His physical therapists are my absolute favorite here. They talk to him so cute and play with him and stretch him and roll him and all that good stuff even if he isn’t paying attention and doesn’t really even know what’s going on. It’s so good for him.

Samuel fell asleep after a dose of clonadine at about 1:30 pm. He didn’t show any signs of sleep apnea as he fell asleep. That’s a good sign. Let’s hope this change of meds works. But he’s sleeping peacefully right now. So I’m headed to tour South Davis.

Thanks again for everything and everyone. We can never repay all you’ve done for us. Keep up the prayers!

Love,
Teresa & Samuel