Archive for November, 2006
November 22, 2006
November 22, 2006 | Updates
No news is good news, right?! Things have been good the last 2 weeks. The flu went through Samuel’s class at school and, well, let’s just say, knock on wood. I’m not going to jinx it by saying he didn’t get it. And his stomach seems to be doing much better on the Pediatric Compleat. There have only been a few times that he’s thrown up. And he only spits up when he’s really wiggly after eating. So that’s all good news. I weighed him today, and he weighs 27.5 lbs. I really want him to weigh 30. Hopefully, soon. If only his little brother Nathan could share some baby fat with Samuel. Then we’d be set for sure!We didn’t make our appointment to have Samuel’s pump reduced again. He has just had a hard time getting over the reduction the last few times. I didn’t feel right about pushing another one on him so quickly. So we will wait until mid December when we go down to have his pump refilled to reduce it again. In the meantime, we will do 2 weeks of hyperbaric treatments starting right after Thanksgiving. That should keep us out of trouble.
Samuel is still having seizures when he wakes up. Sometimes they are worse than others. And sometimes, he doesn’t have them at all. He hates them, though. And so do I. He also has them if he gets startled. I’ve learned pretty quick to tap on the door of his room before I enter or make sure I make a lot of noise coming up the stairs on coming up behind him. Otherwise, it will startle him and cause a quick seizure. I even had to change the ring on my cell phone because I was sick of it making him seize. Crazy, huh?
I’ve seen a few neat improvements in Samuel lately. He’s getting much better with his hands. He can turn the pages on a book if you put his hand underneath the page. It is a definite, purposeful movement to turn the page over. He can also bring his hands to midline if he wishes. He doesn’t have a ton of control there, but he can do it, which is new. His head control is still much better then it was. He is able to catch it and keep it from falling forward. But he’s not so good at catching it if it falls backwards. Hopefully, that will come with time.
The big news…Samuel is FINALLY tolerating standing in his stander! I was looking at his legs a few weeks ago and just feeling like they don’t look “normal”. They seem to be turning in a bit, probably because he’s not bearing weight on them. So I decided I would get him to stand in this stinkin’ stander of his. So I made a plan. I figured when I bring him home from school each day, he already has his shoes and neck brace on. So now, I just leave them on and I take him straight from his car seat into the house and strap him into his stander. Then I turn on his TV show that he always watches at noon and I keep him in the stander for that 1/2 hour while I hook him up to his feeding bag and feed him lunch. Know what happened? He did it! The only stipulation he seems to have is I can’t be in the room with him. As long as I’m out of sight, he’s fine. If he sees me, he starts getting upset because he wants out. So I just stay in the other room and peek around the corner often to make sure he’s OK. And he’s done it every weekday for about 8 days now! Way to go Samuel! He even fell asleep in it one day :). And once I take him out, he’s pooped and falls right to sleep for his afternoon nap. So we’ve got our morning schedule all figured out now and it’s working great!
Well, that’s about it. Everyone else is doing well also. I do look at Nathan every day and realize just how amazing the brain is. He has only been here 5 months and he can sit, hold his head and use his hands, arms, legs and voice better than Samuel can. It’s sometimes hard to watch because I want those things for Samuel, too. I just realize how much we all take it for granted. I can hardly wait for the day Samuel can do those things again!
Keep praying!
Love,
The Jewkes
November 8, 2006
November 8, 2006 | Updates
Time has gotten away from me! It’s been 2 weeks since I posted last and I apologize. Things have been crazy as usual. The day after I posted my last post, Samuel woke up with a cold. He was stuffed up and sounded a little yucky, mostly in the back of his throat. I fed him and got him ready for school and then he started coughing and gagged. And then he threw up. It came up so quickly, that I was scrambling to grab a towel or blanket or anything and then I was trying to get his head turned to the side and keep the rest of him out of it. He started squirming and coughing and then he started gagging and I was trying to get the feeding tube out of his nose because I could see it had come half way up his throat and was causing him to continue to gag. I don’t really know what happened, but all I can figure is between the throwing up and gagging and having a hard time breathing and not feeling well, it was too much stimuation and it caused a seizure.
The seizure was nothing like I’ve ever seen Samuel have before. It wasn’t just a quick jerk or jolt. His eyes started twitching and then his face started twitching and soon his arms were twitching and his eyes rolled up in his head. He was totally unresponsive to me and I have no idea how long it lasted, but it was long enough for me to yell for Tom about 5 different times. And I would yell and then wait for him to answer and then yell again. By the time Tom heard me and came, it was over. But I was crying because I was so scared and Samuel was totally wiped out. He fell asleep for an hour or so afterwards.
That being said, it hasn’t happened again, and that’s a really good thing. Also, he got over his cold all on his own. It never moved to his lungs and although he had a cough and some congestion for about 10 days, it is finally completely gone. So we are very grateful for that. We just hope to never see a seizure like that again. I am pretty sure it was caused by overstimuation as he has been having quick little seizures that are caused by being startled for a while now. I’m learning pretty quick to make sure he hears me coming into a room because if I startle him, it often causes a seizure.
Halloween was a fun week. The kids had spirit week at school and one day was crazy hair day, so we couldn’t resist making Samuel’s hair a bit crazy just like his brothers that day. He looked cute and everyone commented that they hadn’t seen his cute little red hair forever because of his caps. So that was fun. On Halloween day, all the kids got to dress up for school. Samuel was a pumpkin. I had bought him a cute frog outfit, but when I went to put it on him, he was way too long for it. It said it was size 2-3, but Samuel was a good 3 inches longer than it was. It was also a whole body suit, so I knew he would get hot at school and he HATES being hot. So we opted for the pumpkin suit he wore 2 years ago instead. He definitely looked cute and it was a fun day for him. He got to go trick or treating at school and we went trunk or treating later that night. He collected lots of candy that he happily turned right over to his brothers so they could eat it. Maybe next year Samuel will eat his own!
We also went to Primary Children’s for another pump refill. We lowered the doseage again and he is now down to 625 micrograms per day. I can see some small changes with the lower doseage. He has more tone in his hands and in his adductors (the muscles between his legs). But I really should say he actually has some tone in his hands because they were soooooo loose before. And his adductors seems fine when he relaxes. So we still feel good about the reductions. I have had to give him some oral baclofen the past week or so because he has been agitated at times. He just has a hard time with withdrawals everytime we reduce the pump. So we may not try for twice this month like we did last month. It’s pretty hard on him and me :).Samuel is moving and rolling around all the time. One day last week, he had a red nose like Rudolph by the time I put him to bed from all the times he’d rubbed it on the floor the day! We have been army crawling him across the floor and he seems to enjoy it. We’re hoping he’ll pick up on it and do it himself. We’re also working on getting him to accurately choose pictures from a group by staring at the correct one. Sometimes I wonder if he knows the right answers because he won’t look at the right picture. And just when I think he doesn’t know it, he looks right at it and grins like, “Ha, ha, fooled you!” And I just get this feeling inside that he knows, he’s just bored and doesn’t feel like playing. So I’ve been rewarding him for right answers by throwing him up in the air. It seems to be working because he’s much more accurate when we play the games that way!Well, that’s about it for this week. We’ve completely switched Samuel to Pediatric Compleat and although he still throws up easily and spits up sometimes, I’m happier with it because it’s made more from food and less from soy.
Hope everyone is doing well. Keep in touch and keep praying. We sure appreciate it.
Love,
The Jewkes
P.S. Don’t miss the Halloween pictures! Nathan is a little fatty!
