We ended that day by driving to Orem to go to my sister’s graduation party. I think Samuel enjoyed it, but he was a little agitated. I think maybe he was just hungry because once I fed him, he was good to go again. But he did really well for such a long day and didn’t even scream on the way home.

We spent this weekend camping again. Samuel and I just drove up during the days and came back home at nights. He seemed to enjoy it, but he has been a little upset in the evenings again. I basically have learned that if you don’t let him get in a bad mood, then you’re good all day. But if I’m late feeding him or take to long to pick him up when he cries or do something to really set him off, then I’m in for a few hours of being mad. So I try to avoid that as much as possible and am successful most days :).

Today, we ventured to Ogden for his NACD review. I told them I hadn’t done much of his stimulation program because of all the time hyperbarics took and then feeling so poorly these last few months of my pregnancy. But they said he seemed to be improving quickly on all fronts, so that was good to hear. His tracking has improved again - even though I felt he was seeing so well months ago. The other day, I took a toy and whizzed it by his head and he turned his head and eyes to follow it over and over again. I don’t think I could have done any better :)! They also felt that his tone was basically gone and that now he is working on proprioception (knowing where things on his body are). Like when you ask him to open his hand, he doesn’t do it, but if you show him his hand and then ask him to open it, he does. He just has a hard time figuring out where in the heck his hand is!

They also asked me if I thought he understood everything we said. I told them it was a guess, but my answer has to be, “Absolutely!” He just reacts appropriately to too many things that we tell him for me to believe he doesn’t understand our words. And that’s how I treat him - like he understands us. I don’t talk to him like a baby. I talk to him like an almost 3 year old. Because that’s what he is.

Our final conversation was about his eating and their suggestion was to literally give him a taste of something 30-40 times a day. That works out to about once every 20 minutes all the time he is awake, but they felt that was the only way to get him used to food being in his mouth, and I think they are right. Samuel wouldn’t ride in his carseat until we took 80 four hour trips to Murray and back. Now he rides in it fine. He also wouldn’t sit in his tumbleform chair until we worked with him everyday for about a month on it, and now he sits in it great. He hated having his teeth brushed, but now we do it several times a day and he tolerates it. I don’t know why feeding would be any different, so that is what we are going to do. Hopefully, it will work quickly, because he’s not going to like it!

Samuel still has a stuffy nose. I’m hoping that clears up soon. And the kids get out of school this week, so our house should be extra crazy.

Keep praying. We’re so impressed by our little guy! He’s working so hard.

Love,
The Jewkes

Monday morning, Samuel woke up with a head cold. Mostly just a stuffy nose, although his throat looks like it may be a little sore. He seemed much better today, so hopefully, it will be short lived.

Samuel is also much calmer this week. I was getting very tempted to put his tranxene back to the higher dose, but it seems we’ve made it through the worste of it. So we’ll leave it where it is for a while and try to get rid of it altogether sometime in the near future. I am debating on what to do about his Keppra because I don’t like him having seizures 4 or 5 times a day. It just concerns me that they could affect his brain. So we will talk to our neurologist about it and see what he says.

I have seen a few changes this week. Samuel’s tracking with his eyes seems to be even better than before. He is noticing small things and he is definitely able to quickly find sounds and turn his head toward them to see what they are. We were flying a toy plane around his head the other day and I was amazed at how fast he could follow it. I also swear I saw him the other day on his stomach trying to push his head up off the floor with his arms. I was outside the door of his room and didn’t want him to see me because then he would expect me to put him back over on his back. But it sure seemed like that’s what he was doing. I sure hope so! He has been rolling onto his stomach several times each day. That’s also something new.

Up to 3 brought us some new toys and switches and Samuel seems to really like them. He has control of his arms to a point when he wants to. If I can find something to motivate him, he can really push those switches. But he has to want to do it, or he’ll just lay there and look at me like I’m crazy :)! But seeing as how they brought him a fire truck and a toy puppy, it’s been easy motivation the past few days!

Samuel still loves to be thrown in the air and will smile and even laugh at that daily. He will also sit and watch TV with us, but it has to be something he is interested in or it doesn’t last long. We’re still working on getting him to tolerate his neck brace and crawler at the same time. Hopefully, that will come with time.

That’s it for now. I posted a picture of Samuel in the hammock with his dad. He really likes it there. And there are a few pictures of our canal. I took them so everyone could see how high and fast it is flowing this year - just like last year. We are also working on our fence - yea!

Keep praying for our little guy!

Love,
The Jewkes

We ventured down to Orem this weekend for my brother’s wedding. It was nice and Samuel did pretty well. He didn’t sleep great at grandma’s house. I think it was just unfamiliar surroundings. And he cried most of the way home. But he was pretty calm and happy during the stay at grandma’s and he even posed for a few wedding pictures with Uncle Scott and the rest of the family. And he took several bites of the strawberry shortcake they served at the reception. It was yummy!

The highlight of the weekend had to be his older brother, Wesley’s, 10th birthday. We had a little family party for Wesley and Samuel watched him open presents. Then we had cake. You have to realize that one of the last things we did with Samuel before his accident was sing Happy Birthday to him and let him blow out his candles on his cake. And he loved it so much that day (nearly a year ago) that we had to let him do it several times. So I was hoping for a good reaction from Samuel as he watched his brother, Wesley, with his birthday cake.

Well, Samuel delivered! As we sang Happy Birthday to Wesley, a big smile stole across Samuel’s face. And we ended up singing to Wesley and letting him blow out his candles 3 different times because Samuel enjoyed it so much. He was full of smiles the entire time. Yea, Samuel! Now we just have to practice blowing so that Samuel can blow out his own candles in a few months!

Not much more going on this week. I’m getting bigger and more uncomfortable all the time. Samuel sleeps better than I do at this point for sure. I should mention that I have been trying to prepare Samuel for his new little brother. And I think Samuel somewhat understands what I’m saying. (It would actually be hard to get any 2 year old to understand that there really is a baby in mommy’s belly.) But I will pat my stomach and say, “Look at mommy’s belly! It’s BIG! Do you know what’s in there? It’s a brother. It’s a new brother. You better tell him to come out because mommy’s belly is getting too big!” And then I’ll help him point to my belly while I say, “Come out little brother. You better come out right now because mommy’s belly is getting too big!” I always get a grin at that point. In fact, it’s getting to the point now that I can ask him where mommy’s belly is and he will look at it on his own without me patting it. I think he understands what I’m telling him. He just thinks I’m insane :)!

Well, that’s it for this week. Please keep up the prayers for Samuel. He has been more agitated this week than he has been for a while. I am coming down on his tranxene and that could be the culprit. But I often just get the feeling that he is tired of not being able to get up and play. It has to be frustrating. Please pray that he will get more purposeful movement so he can roll and crawl and grab things and make a mess. What a wonderful thing that would be!

Love,
The Jewkes

Today we got quite a few smiles out of Samuel. We’ve figured out that he loves to be thrown or swung or even hung upside down. Pretty strange since he hated that stuff before his accident and it was too stimulating after it. But he loves being thrown on the bed and tonight his dad held him upside down for a minute and he didn’t get upset about it at all. That’s the first time I’ve ever seen that, but Tom says he does it all the time. It’s good for his vestibular system, so it’s basically therapy. FINALLY - Daddy has an excuse to swing his kid around!

I also discovered that Samuel likes sweet tarts. I had to bite then into tiny pieces before putting them in his mouth and even then it made me nervous. So I’m going to buy some pixie sticks and smarties and see if he likes those. I’m excited to maybe be able to use them as treats for him participating in therapy.

One other exciting thing is we should be getting our crawler this week from the Up to 3 program. The USU technology lab is making them for just the cost of supplies which is great since they are highly overpriced if you buy them from a manufacturer. We are also getting Samuel a neck brace so he won’t have to deal with holding up his neck when he’s in the crawler. I’m hoping that if we put on the neck brace, put him in the crawler and put some shoes on him that he can figure out how to push himself around. Maybe we can get him out on the front driveway and get his brothers riding bikes around him to encourage him. It could be really fun for him if he can just figure it out. Let’s hope so.

We got the chance to watch a backhoe dig a big hole in our yard this weekend (another long story). Samuel seemed to enjoy that also. And tonight he chuckled a few times as his dad played “one for the money” and threw him on the bed. He is having a harder time falling asleep at nights, but he does sleep fine once he’s asleep, so it’s liveable. I’m also trying desperately to teach him to raise his arms off the floor and reach for me when I want to pick him up. So far, no luck, but it sure would help me out if he could because I just can’t bend down that far very easily anymore!

I added a picture of him sleeping because it’s so amazing to me the difference between now and in the beginning. He sleeps now with his legs bent and his arms either bent across him or clear up above his head. Before, he slept perfectly straight in a backwards “C” shape. Now he seems to sleep in a “normal” position. Baby steps, right?

Lastly, they turned on the canal yesterday. It brought me to tears when they told me they were - just too many memories. But our fence is coming along. Yea!

Keep praying and thanks so much!

Love,
The Jewkes

Love from,
Grampa and Gramma Jewkes