We made it to hyperbarics all week and now just have one more week before we get a break from it. That will certainly be nice. We also have a few doctor appointments this week, so it should turn out to be a pretty busy one.

Samuel has been mostly content most of the time lately. We finally seem to be to a point where if he is upset, it is because something is wrong - like he’s hungry or wet. There is very little agitation from him that I can’t find a source for. It’s so nice to be to that point. I am excited to be done with hyperbarics so we can take him off the last of his tranxene (anxiety medication). That will just leave us with a very low dose of Keppra (seizure medication) twice a day. I probably won’t mess with that for a while, though, since he does have several seizures a day.

Yesterday, I put Samuel’s tumbleform chair inside his stroller so he could be strapped in sitting up and we went for a walk. He was content the whole way and seemed to enjoy being outside (although the sun seemed a little brighter than he would have liked it). We didn’t take too long of a walk (just about 6 blocks) and that was all I could manage. For some reason, being pregnant really affects my legs and I’m not able to walk very far. So I guess we will be doing short walks, but as often as we can since Samuel seemed to enjoy it so much.

Tonight, one of our neighbors brought us a strawberry pie. She had no idea how perfect that was for our family! We all love strawberry pie. Well, maybe all except Ben, and he isn’t much for pie all around. But even Samuel loved strawberry pie before his accident. Maybe you noticed that that’s what his birthday cake had on top of it - strawberries! Anyway, as I ate my pie, I couldn’t help but try some with Samuel. And guess what? Oh, you’ll never guess. But I’ll keep you in suspense for a minute. OK. I’ll tell you. He liked it! Really, he did. I haven’t seen him eat that much since his accident. Mind you, it was probably about 12 tiny bites of strawberry gelatin and whip cream. But he didn’t get mad about it at all. He just licked it off his lips and swallowed it down. Woo hoo! Strange thing to get excited about, be we were sure excited!

Samuel’s cold is also gone. And he is still sleeping well at night. I hope things keep up this way for a while. It’s nice to have good days one right after the other. And Samuel is still responding well to games we play with him. He loves to roar like a dinosaur and always smiles when we act scared of it. And today, he was reaching out to move a little truck in front of him as his dad teased him and told him not to play with it. It was funny because he wouldn’t show off for his dad when I said he’d been playing with the truck earlier. But as soon as dad started teasing, his little hands worked like crazy to move that truck and he grinned away at it.

Thanks again to everyone for all their prayers. And keep them up for our little guy.

Love,
The Jewkes

We were pretty adventurous this week again. Tom rode down to hyperbarics with us one day to run some errands in Salt Lake while we were at Samuel’s treatment. It turned into a very long day when we got caught in traffic and decided to pull off the freeway and have dinner rather than fight the traffic any longer. So Tom, Samuel, Ben and I had dinner in a little restaurant and Samuel was good (except for his wiggling). He certainly does not like to hold still lately. Not that I’m complaining. He is just a busy 2 year old and wiggling is what he loves to do. As long as he’s not mad, I’m good with it. (But it does get a little tough holding him as my belly gets bigger and my lap smaller!)

We all went out to eat at the Cracker Barrel cafe just a block from our house on Saturday. Samuel was good again and just sat (well, wiggled) on my lap the whole time. And we even ventured to church together as a family this week. Samuel slept a good portion of the time in his Aunt Kaylee’s arms and lay on the floor the rest of the time scooting and wiggling around. But for the most part, he was perfectly happy to be there with us.

Samuel did have a cold all week. But it has not been a difficult cold so far. (Knock on wood!) He’s just had a bit of a stuffy nose. We are on hold for therapy since our home therapies ended on the 15th of April and we have to wait for the insurance company to decide whether they will continue home therapy or switch us to outpatient at this time. I’m pretty sure they will switch us to outpatient which will be a 10 minute drive to Providence once a day for therapy. But it should be OK, I hope!

Still not much luck on getting Samuel to eat by mouth. We try everyday, but it just upsets him to have anything in his mouth. We also are at a loss on how to get him around. He won’t have anything to do with his wheelchair or his stander. And although he will sit in his tumbleform chair, he won’t be strapped in it. The only place he will sit is in his carseat which is ironic since that was his most hated place to be just a few months ago. So I guess we’re going to have to find a carseat on wheels so we can take him with us more places without having to carry him everywhere. I’m not sure if he’s getting heavier or I’m just getting weaker. Probably a combination of both. But hauling him everywhere in my arms just isn’t going to last too much longer.

Samuel’s myoclonus has also changed. He has small, quick seizures. They last about 5 seconds and happen several times a day. (Myoclonus is a form of seizures, so this is not that much of a change. They are just different than before.) But they don’t seem detrimental to him, so we are just watching him. It would be wonderful if they eventually go away altogether.

For Easter, Samuel got a gazillion bubbles machine that we were able to hook an adaptive switch to. So when he pushes the switch, the bubbles blow and when he stops, they stop. He was a little overwhelmed by it on Easter morning, but we’re hoping he’ll really like it as he figures out how to work it. Samuel also got a haircut and didn’t make a peep through it - a far cry from last time when he got so upset he threw up :)!

Well, that’s about it for this week. Thanks for all the prayers and keep praying. It’s a long, slow road, but we couldn’t be more grateful to have this absolutely beautiful little boy in our lives. He is amazing and we sure do love him!

Love,
The Jewkes

Samuel got a new toy this week that he really loves. It’s just a small “wall” of beads that play music when touched. It’s amazing how well he can use his hands and arms when he really wants to. When we put the toy next to him on the floor, he gets himself right by it and sticks both hands in the beads and moves them around to get the music playing. It’s good to see him so interested in something.

We were pretty brave this week and took Samuel with us Saturday to run all the kids to and from soccer games and then we even made a trip to the grocery store. He was good through all of it. That night, we even took him along to a family BBQ near Lagoon and he was great considering all the noise and people. And then on Sunday, we ventured to church together as a family for the first time since last July. Samuel made it through the whole 3 hours of church (though mom barely did!) By the end, he was pretty wiggly and I had held him about all I could for a while.

The past few days, I’ve noticed that Samuel seems to be getting better at moving himself across the floor. It’s not that he’s moving in any different way. It’s just that he seems to be going where he wants to more than in a circle. Everytime I leave him in his room, he basically ends up with his head and arms in the closet where all his toys are. And when I leave him downstairs, he moves from one end of the room to the other. Sometimes I wonder what in the world he could be after. But I think he just wants to be moving somewhere - ANYWHERE :)!

Samuel is still smiling quite often. Today, I put a stuffed monkey on my head and then pretended I couldn’t find it. I kept asking Samuel if he knew where it was and he’d look at up my head. Then I said, “Is he on my head?” and Samuel grinned. When I looked up and finally “found” the monkey, he really let out a smile. He loves to watch his brothers run around and wrestle with dad or get tickled or just play. And he is always happy when they are doing things with him. I don’t even know that he cares what. He just likes having them around.

Well, that’s about it for now. We’re excited for summer and trying to figure out some sort of stroller that Samuel will be happy in so we can go and do things in the nice warm weather (when it gets here!)

Keep praying. We certainly are grateful for everyone’s prayers and help. And maybe when you pray, you could ask God to bless all the children who suffer and struggle through trials such as Samuel’s. We have met so many others who have such difficult trials and it breaks my heart to know of the things they endure also. There are a few specific children in my mind right now who I know are struggling. I pray for them and their parents that things will get easier SOON!

Love,
The Jewkes

We have come up with a lot of games that we can play with Samuel. We will have him push our noses and we will say “beep”. Or we will pretend we are looking for Samuel or one of the other boys even though Samuel can clearly see where they are. Then we’ll act startled when we finally find them. He thinks those are both funny. And the other night, Tom took Samuel and pretended that they were hiding from me. As I would peek over Tom’s shoulders to try and see Samuel in his arms, Samuel would catch a quick glimpse of me and knew I was trying to get him. He loved it!

One of Samuel’s therapists brought him a switch which is basically just a big button that does something when you push it. We actually have several. Some work toys and others replay recordings. But this particular one is very easy to record different sayings on and is easy for Samuel to push. So we will record things into it like, “Hi, mom” or “Ready, set, go” or “Turn the page.” Then we will get Samuel to push it. If it says “Hi, mom” then I will reply with “What, Baby?” If it says “Ready, set, go” then the kids will take off running down the hall. And if it says “Turn the page” then we will turn the page on the book we’re reading. He absolutely LOVES it! I would say it is his favorite things to play with.

Samuel has also discovered a few new movies this week - Toy Story and the Tigger movie. He seems enthraled with them for a week or so and then gets bored with them so we have to find new ones. I consider that a very good sign. He also still loves reading books and we are scanning some of his books into the computer so we can hook up a switch to the computer and he can push the switch to turn the pages on the book. He should enjoy that.

We are working on having a crawler made for Samuel and his stander that we ordered 3 1/2 months ago finally came. He doesn’t like it, but we will just have to work him into being in it a little bit each day.

Last of all, we finally got to spend some time outside yesterday. Samuel seemed to enjoy it. His favorite thing was when we put him on the tramp and lightly bounced with him. He smiled at that and at watching his brothers jump around him. He is just so aware and seems to remember so many of the things he loved before. It was fun to be out in the sun!

Thanks again to everyone. Keep up the prayers and the great faith!

Love,
The Jewkes