A New Update…
May 21, 2008 | Updates
I can hardly believe it’s been almost a month since we returned from our Canada trip. Things have been busy, as usual, and we have had a lot on our plate to catch up from being gone.
Just 2 days after we returned from Canada, we had Samuel’s IEP meeting at school. It went fine, but I am really worried about next year. We have been really spoiled the last 2 years with a great teacher in Samuel’s preschool class. And now that is ending. I have only met his new teacher once, but I have heard that some children have had a difficult time in her class. And, honestly, I just don’t know how to deal with any problems at school. Up to this point, school has been an incredible blessing for Samuel. He has enjoyed the time there with his teacher and peers. But, like I said, we have been spoiled. His teacher is incredible and I don’t know that I can deal with anything less. For Samuel, school is an opportunity to get out of the house and enjoy himself and be around children his age. If for any reason he does not enjoy school, I don’t know that I’ll see a point in sending him. I guess we will just have to see. But I know that Samuel requires a lot of attention, a lot of enthusiasm and a fast pace and I just don’t see that he is going to get that in his new class. Let’s hope I’m wrong!
Mother’s Day has come and gone and I enjoyed myself :). Tom was sweet and bought me a few nice things and then the kids made me all sort of cards and little gifts throughout the day. It was a nice relaxing day and I even gave myself the day off from ABR. Probably shouldn’t have, but it was nice! The talks in church ended up being really nice, also. It was a good day and it always reminds me of all the good things my mom and stepmom have done for me (as it should). Hope everyone had a nice Mother’s Day!
The next day was the dreaded semi-annual dentist appointment. Actually, I think just Samuel dreads it. I was dying to take him because his teeth needed a cleaning so badly. A little verced, some laughing gas, 1 dentist, 2 assistants and 20 minutes of mom and Tanner holding Samuel down and his teeth were pearly white again! Yeah! It was pretty tramatic for everyone, but the dentist was very good about it. We did get x-rays showing that Samuel’s front 2 teeth are loose because he has knocked them on the floor so many times the roots are pretty well nonexistent. He is also set to loose his two front bottom teeth probably in the next year or so. Can’t believe he’s getting that old! I went ahead the very next day and ordered the kits to send his baby teeth in when they fall out to have the stem cells extracted from them. Who knows if they will help him, but it’s worth a try.
A few days later, we headed down to Salt Lake to have Samuel’s pump refilled. We also reduced the dosage. He is now down to 95 micrograms per day and they saw no reason to stop the decreases. Hopefully, we can take the pump out soon. But, the decreases are always difficult. He had a really rough day the day after and then seemed to do just fine for a few days. Now, he’s back to being so wiggly, you can hardly pick him up. I just keep telling myself it will be a good 2 weeks before he gets over it. But then I wonder if he really gets over it or if we just get used to it. I don’t know. Baclofen isn’t a smart drug. It stops signals to all the muscles in the body (including the ones you WANT to move). So I just can’t decide if keeping him on it to make it easier on me is better than taking him off it to see what he can do. For the time being, we’re trying to get him off it. But I just don’t know what the future will bring. Honestly, I probably am just thinking too much!
Speaking of medications, I have put Samuel back on his Neurontin and have weaned him off some of his Keppra. He just never got over the agitation that came with putting him back on it after my dumb mix up of his seizure meds. He’s done much better off some of the Keppra. But on the downside, his seizures aren’t controlled as well. So, I guess we’ll be making an appointment with the neurologist to see what other options we have.
Oh, we were also able to take Samuel swimming a few days ago and he actually liked it! He normally screams through his baths and in the past, he has really disliked swimming also. But he stayed in the water for a good 20 minutes before he decided he was done. It was fun and guess what? He weighs A LOT less in the water! It was pretty nice.
So, that’s about it. They turned the canal water back on for the summer on Mother’s Day. That sort of ticked me off, but I got over it. I guess they don’t think of me when they turn it on. We have fenced in our yard and then fenced in a playyard for Nathan inside of that. We have child door handles on all the doors to the outside and on the inside of Nathan’s bedroom door. We still have him sleeping in his crib and when he’s not in the playyard fence, but is outside, then he is wearing a lifejacket. I still have to get a wireless child leash that will beep if he gets too far from me and an alarm for the back sliding door and maybe a baby gate for the back deck. I have to admit that I am seriously paranoid about this year. In a few weeks, Nathan will be the same age Samuel was when he had his accident. I just wish we could fence in the canal, but we can’t. Anyway, not a good thing to dwell on…
Speaking of Nathan, he’s been sick for nearly 2 weeks. I think he had one thing and then just as he was getting better, came down with something else. His eyes have swollen up huge twice in those 2 weeks and he’s had several fevers. They swabbed his throat for strep yesterday because it looked so sore, but it came back negative. When I took him to the doctor, he had a fever of 105 degrees, which caused me to nearly pass out! Luckily, motrin brought it right down. But I’ll be glad when he is better. He is just so terribly miserable right now. And I certainly hope no one else gets it - especially Samuel. Fevers tend to bring on seizures and big ones…
We’re doing ABR everyday, but haven’t seen any changes yet. I didn’t expect any this soon, but some parents are already seeing changes in their children. I have to admit, it makes me jealous. I’m struggling a little because it’s hard to care for Samuel when he is so wiggly and not as happy as usual. Here’s to praying it goes away soon. I also so wish that I could find a way for him to communicate with us. It seems like whatever we try, he isn’t willing to participate. It makes me start to feel that maybe he doesn’t even understand us, but I do believe in my heart that he does. I just keep hanging in there knowing that this is a marathon race, not a sprint. But I can’t wait for the day that he can even somehow tell me “yes” or “no”. What a wonderful thing that would be!
Schools out soon and things will be crazier than ever, but I LOVE the warm weather! I hope you are all enjoying the spring. I know I am! Thanks for all your prayers! Until next time…
Love,
The Jewkes
P.S. We also celebrated a birthday party for Wesley! It was fun. And thanks to everyone who signed up for the Revolutionary Money Exchange. We were able to raise $110 towards our next ABR trip!
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May 29th, 2008 at 8:32 pm, Natalie Says:
Wow,chica,busy as usual! Glad you had a nice Mother’s Day. I seriously love that day. My mom hates it–she says it reminds her that was never a perfect mom. Me and my brother disagree but she still just doesn’t like that day. I,however, love it. I know I’m not perfect but I just feel so grateful to be able to be a mother. I love it all. It’s the hardest, most satisfying thing I have ever or will ever do! And I admire you as a mom–I am so glad to have you for a friend!
I have to comment on the water in the canal. Don’t ever be afraid to be paranoid! If it makes you feel better and keeps Nathan completely out of harm’s way it’s a great thing. I was the same way with Bubba. Until he was past the age that Brea was when she was diagnosed, I was so sure that he was going to have the same thing. Every little problem I attributed to hydrocephalus instead of normal growing pains! After having such a trying experience with one child, it is so very brave to try it again with another one. But I have to say, having Bubba really healed my heart and let me enjoy watching him grow. I never take anything for granted! I hate that I had to learn this way but it’s still such a blessing to have grown the way I have. And you, my friend, are the epitome of brave, loving, and strong! I love ya!