January 30, 2006

January 30, 2006 | Updates

Big news this week - Samuel is smiling! It started on Saturday. I was sitting next to Samuel in his room and lecturing Tanner as he stood in the doorway on getting his chores done and fast. It was a pretty long lecture :)! When I finished, I looked over at Samuel and he seemed to be really focused on what I was saying, so I said, “Tell Tanner to go do his chores!” At that, he grinned! It was like he thought it was funny how I had been lecturing Tanner. It was quick, very quick, but it was a grin and I LOVED it!Later that day, Ben yelled down from Samuel’s room that he had made Samuel smile and laugh. We were a little sceptical, but a while later, I sat in the room with them behind Samuel and Ben said again, “I made him smile!” Well, now I just figured he was saying that because he’d heard mom all crazy about how she had made Samuel smile earlier in the day. But a few seconds later, I heard a chuckle and it was Samuel. I jumped up and looked at Samuel’s face and it was over, but I had heard it. I had even seen his chest move as he did it! It was great. So, Saturday ended with about 5 smiles and 2-3 chuckles and we were thrilled.

Sunday came and went without any smiles, but not without a lack of trying. You know how people look as they try and get babies to smile? That’s nothing! You should see all of us try and get Samuel to smile :)! And then today, the smiles were back. One this morning when I put my glasses on Samuel’s face. He closed his eyes as I put them on him, and when he opened them, he grinned. He always did like my glasses. Then this afternoon, several smiles at Ben, several smiles at Tanner and several smiles at mom. We can barely contain ourselves - as I’m sure you can tell!

Samuel’s new diet is going slow. Things have been giving him an upset stomach and gas, so we have been going VERY slow. I have also been reducing his Keppra slowly for about a week now. I don’t know if that has to do with the appearance of his smiles, but I will continue until I see an increase in his myoclonus.

Otherwise, therapy as usual. And Samuel’s posturing can still be pretty bad if he gets at all upset. And the smallest things can upset him. He really doesn’t posture if he is laying on his left side. But on his right side, he can really get going. And I’ve decided it’s his left leg that leads it all. If you can keep that “offending” little leg bent, then you can pretty well prevent the posturing altogether. But we can’t hold his leg bent all day, so we do what we can.

Samuel is also eating better. By better, I mean a few bites of yogurt each day. But at least he isn’t freaking out everytime we put the slightest bit of anything in his mouth. He really does have the capability of eating (at least mashed foods), but it is going to take a lot of practice. Our biggest hurdle right now is he hates sitting up and it’s not that easy to eat when you’re laying down :).

Lastly, Samuel still really enjoys his videos. As soon as he wakes in the morning, he wants UP! And sometimes, that’s at 5:30 or 6 am. So I lay him on the floor and put a movie in the laptop and he is content to watch it while I sleep another hour or so. It’s so funny, but he will fall to sleep in his bed on his own at night, but other than that, he hates it in there. He’d much rather be on the hard floor. Funny kid.

Oh, one other thing. We had lots of blood work to check his thyroid and calcium and other fun stuff. The doctor says his parathyroid test came back strange - showing that his zinc is low and his albumin is high. His doctor is trying to get someone to interpret the results. So we don’t know what it means yet.

Keep praying. We are specifically praying for Samuel to keep smiling, for his tone to normalize (posturing to stop) and for him to be able to communicate with us. Maybe if we all pray for the same things, we’ll get faster results.

Thanks so much!

Love,
The Jewkes

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