6.25.2008

marathon

I was talking to another mom today at therapy. She was telling me that during the first 3 months of her son's chelation, she wasn't sure she was doing the right thing. She said he had some behaviors he wasn't having prior to chelation, and that other behaviors that he previously had, actually got worse. Now that she's 6 months into chelation, she's glad she stuck with it as he's making great progress and she's excited about the possibility of his "recovery".

Another mom on a message board I belong to made a comment about how this isn't a sprint, but a marathon. That some kids will have to undergo chelation for years before they are well enough to be considered toxic-free.

We've been doing chelation for not even 2 full months yet and I'm already telling myself that I can't expect too much at this point. Holden's making progress, whether it's directly related to the chelation, or the therapy, or the multiple supplements, or the anti-fungals, who knows. I do know that 6 months ago, getting him to imitate anything was nearly impossible. Now, he will watch the Wiggles, or Sesame Street, or another video - and attempt to do what they're doing. Most of the time, it involved music and dancing. He loves music. He will also "do" most anything you ask him to do, if you show him first. We haven't graduated to actual one-step commands on much yet though. He will clap if you tell him to clap, and he'll put his arms up if you say "arms up". But, most of what he does, you need to do first. It's progress, nonetheless.

For the past 24 hours, he's been extremely stimmy. Wanting paper. He will shred it into long strips and then drop it...pick it up, later, rinse, repeat. He'll do this until we step in and redirect him. The redirection only lasts for a few minutes though, and then he's wanting his paper back. I gave him the EDTA suppository last night around 11:30pm. So, this morning, I've given him some charcoal to see if that will help with his focus. We'll see if it helps.

It's so hard to watch him go through this battle and know that you can't do anything (very much of anything, anyway) to help him feel better. I hope and pray that one day he will be thankful and not resentful that we've put him through all of this.

6.20.2008

not just good, but a GREAT day (so far)

Holden had been a bit whiney and just kind of "spacey" last week. I always know that once he goes through something like that, he always comes out on the other side with improvements. It's just waiting through the low times that gets to me. Yesterday, my mom showed up for a few days to stay with us. He hasn't seen her in a month or so. When she walked in, he went straight up to her, hugged her and sat in her lap for at least 10 minutes. Just hugging and loving and kissing her. Today in ABA, his therapists were SO happy with him. He was asking independently for raisins, to "sing", to be bounced on a bouncy ball, to be tickled, etc. Also, 2 of his therapists were having a conversation while he was watching a movie and one said to the other "his shoes (he had on crocks) are on backwards". They both kept talking about his program and she said the next thing she knew, he was taking off both shoes - switched them to the right feet - and then put them back on. Crazy. Apparently not only did he hear them, but he comprehended what they were saying too.

He's loving "If you're happy and you know it" right now. Here's a link to the video I shot on Friday:


We've been doing EDTA chelation suppositories since May 11th. Maybe, just maybe, they're beginning to help!? Whatever it is, I'll take it!

6.13.2008

Wii

We love the Wii in our house. Especially Zoe. Anyway, yesterday, Zoe and one of her friends were doing Wii Fit. They were doing Yoga poses, and I looked up to see Holden looking at her, then the tv, then her, and smiling. Then he started trying to do the pose, too. Gross motor imitation, yay!!!

I was doing the step aerobics with Wii Fit and he was trying to step with me. Again, most imitation! He's been doing great with that lately.

He's also saying the sounds of the letters with Leapfrog's Letter Factor DVD. He's had it for months now, but he's just starting to do all the sounds. I've decided to let him watch this one at least twice a day...

Suppository day today. Although I hate putting him through it, I also look forward to suppository days because I know it's helping.

6.05.2008

life

I can't believe it's been a month since I've posted. Sometimes I don't know where the time goes. Really.

Zoe's last day of school was yesterday. I can't believe she's a 4th grader now. I swear, she just started kindergarten!!! Hopefully she'll have plenty of friends to hang out with this summer so I don't have to drag her to therapy every day. Sometimes she doesn't mind, but for the most part - she'd rather be playing. Can't blame her. I'd rather be playing, too.

Jackson's all over the place now. He wants to walk, but he's just not quite there yet. I took him for his 9 month checkup yesterday (although he's almost 10 months). He's in the 60th percentile for height, but only 25th for weight. Overall though, he's meeting all of the developmental "milestones", so that's the most important thing at this point. Oh, and he wants me ALL.THE.TIME. Seriously, he's a big mama's boy. Which I guess makes sense - he's with me 24/7.

Holden's doing...okay, I suppose. We've been doing the EDTA suppositories since May 11th. He's tolerating them well. We've recently started Carnitine and Biotin. He's been extremely stimmy lately. Lots of visual stims, and some verbal stims as well. He's always been a visual kid, but lately, it's much worse. But, he seems to be doing well at therapy. Some whining during transitions, but who doesn't whine during transitions? I know I do.

They've worked in a potty break into his program at Quest. They take him to the potty every 30 minutes now (for the 2 hours he's there) and make him sit on it. They sing songs, he sits and does the hand motions to the songs while he's on the potty. Last week, I got him to actually PEE in the potty twice - both times were 1st thing in the morning. So, maybe he won't be so far behind on the potty training after all. We'll see.

I can't remember if I posted about this before or not - but he's also finishing songs now. Filling in words to songs like "Twinkle, Twinkle Little Star", "ABC's", and "Itsy Bitsy Spider". He'll also try to count along with you when you count. At therapy last week, they did a small circle time with 3 kids. All around Holden's age. All with 1:1 therapist with them. They sat, had a book read to them and then had to answer questions...such as "Where are your eyes?", etc. I didn't see the 1st circle time. His therapist said he had some trouble at first...cried for a few minutes, but then settled down. The 2nd time, I sat in. I was really pleased with what I saw. He sat and did Mr. Potatohead - and followed simple directions, like, "put his eyes on", or "put his shoes on". It was nice to see. If someone would have asked me if he would/could do that, I would have probably said no. But, now I know he can! We're going to incorporate some of that into things at home, too. So, hopefully he'll just get better and more comfortable with it.

More later!