April 17, 2006

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