December 4, 2006
December 4, 2006 | Updates
I’ve sort of gotten into a every 2 week post routine. I’ll try to get back to the weekly ones, but don’t hold me to it. This month promises to be a crazy with one with Christmas and all.
The past week, Samuel saw snow! He’s seen it before, but not being able to play in it last year, I don’t know how much he remembers it. I tease him that someone made a REALLY big mess outside and who’s going to clean it up! He seems to think that’s pretty funny. I’m also noticing that he smiles at appropriate things in movies or shows and smiles consistently at the same point in several movies. Like in Incredibles, he always smiles when Mr. Incredible says at the beginning, “I just cleaned this mess up! Can’t we keep things clean for a while!” And today, he thought Harriet Olsen on Little House on the Prarie was pretty funny after she’d had a little too much of the doctor’s tonic (moonshine). Pretty cool, eh?
We’ve now done a full week of hyperbaric treatments. The first day was a real bust. We tried the new multiplace chamber and Samuel hated it and screamed harder than I’ve seen in scream in a LONG time! The new chamber looks like a HUGE submarine - almost like one out of a cartoon with lots of bells and whistles and knobs on it. You walk inside and sit down in a chair and they pressurize the entire chamber. Then they put “space helmet” on you and feed the oxygen into your helmet. Well, that caused several problems. First, there was nowhere to lay Samuel, so I had to just hold him. Second, he DID NOT like his hood (helmet). And the TV in there was small and he had to wear earphones inside his hood to hear it. (The ear phones stayed on a total of about 2 minutes.) He was so mad and screamed so hard that he kept gagging and coughing and I was SO GLAD I’d fed him long before his treatment because I didn’t even want to know what kind of mess we would have had if he’d thrown up during the treatment.
So…we went with a new plan the next day. We put him back in the monoplace chamber. (They don’t allow 2 people in those chambers anymore.) And we lined the chamber with pillows. He did good the first day. The second day, he ripped the ground right off his foot and then just for spite yanked out his feeding tube also. So we had to take him out halfway through the treatment. The third day, he did well and the fourth day he made it all but the last 5 minutes when he put 2 pillows on his head and had to be taken out. So, 5 more to go and wish us luck! He loves watching Incredibles, so we are only letting him watch that while he’s in the chamber. And he loves making things hard on his Aunt Kaylee when she takes him down for treatments (i.e. pulling off grounds and pulling out tubes and sticking pillows on his head). So we’ll pray harder those days!
He also woke up with a cold the day after I posted that he wasn’t sick. So from now on, I’m not telling you if he’s not sick! You’ll just have to assume he’s not if I don’t say he is :). But he got over it fine and just required a little oxygen a few nightes because he was stuffed up.
He’s doing great on his new formula. He doesn’t hardly ever spit up. The seizures are still around, but don’t seem to make him sick to his stomach anymore. And he seems to be getting stronger all the time. His abs are like rocks and his legs are getting stronger. Our PT suggested we start putting weights on his arms and legs while he’s squirming around to help his muscles increase. I asked him if he was sure he really wanted that. I think we’ve all been bopped in the nose by Samuel our share of times and wished for a moment that he wasn’t quite so tough.
Oh, I almost forgot that Samuel FINALLY got a wheelchair of his own. It’s cool if I do say so myself. It has all the bells and whistles and is “grasshopper green”. He seemed pretty proud of it when he first saw it. It’s worked out well. His head stays on the headrest, the lateral supports work better than any other chair we’ve had, and the footrest is GREAT! It’s one “box” for both his feet to rest in so he’s not smacking his feet against hard metal as he moves his legs around. It’s pretty well the best chair we could have asked for thanks to a great PT and a wheelchair rep who had a near drowned child of his own. It’s always good to work with people who truly understand your situation.I just want to leave you with a few cute stories. Samuel’s Aunt Kaylee comes and works with him for a few hours each weekday. Samuel has learned to expect her and a few minutes before she is due to arrive, I tell him she is coming and he starts grinning from ear to ear. Sometimes, he watches out the window with me for her. Sometimes he answers the door with me. But always, he’s excited for her to come. Samuel even went swimming with her the other day for the first time since a few days before his accident. He was pretty good – just didn’t like the life jacket – stinker. But I think in the end, the water was just too cold.
Another cute story. The other day, Tom was hitting himself in the head with Samuel’s feet. (Strange picture in your head right now, I know. But we will pretty well do anything to entertain this little guy.) Well, Tom got Samuel laughing so hard! His belly was shaking and the sound was coming out and all that wonderful stuff. And, Tom has figured out how to throw Samuel clear up in the air and catch him safely. There is nothing in this world that Samuel enjoys more! NOTHING!
So one more week of hyperbarics and then I’ve got to buckle down and figure out a few new ideas for fundraisers. There aren’t many options out there to help Samuel get better that are “approved” and that health insurance with pay for. Health insurance companies in these instances mostly pay for maintenance of the patient. The medical community just does not believe that the brain can be healed. They are headed in that direction, but there are a lot of years between now and that becoming a reality. But there are a lot of off-label treatments – like hyperbarics – that could make a huge difference in Samuel. I swear by hyperbarics and can’t believe the difference it’s made in Samuel. Yet, insurance won’t pay for it and none of our doctors would have ever recommended it. So, we will be paying for a lot of the things that we want to do to try and improve Samuel’s function. Anyway, enough on that for now. I’ll let everyone know what I come up with.
Again, thank you for all your prayers. We couldn’t ask for better friends, family and acquaintances. You are all wonderful! Keep up the prayers.
Love,
The Jewkes
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