3.31.2008
true joy
Today Holden was at the clinic for ABA. I usually drop him off and run errands and come back 2 hours later to pick him up. Sometimes I stay in the waiting room, sometimes I go back and watch so that I can learn. Today, I went in to pick him up about 15 minutes early and sat in the waiting room. He came out the door in the little flintstone car he likes so much and I didn't say anything. I wanted to see if he would notice me. He did more than notice me. He turned and saw me...smiled with those dimples of his, got out of the car, said "mama!!" and came over to give me a hug. I can't even begin to describe the way it felt. You wait so long, and then one day it happens. You finally know that he realizes you are mama. And he loves me. I could see it on his face and how excited he was to see me. I'll never stop fighting to bring him back to us.
good day!
The new yeast medicine (Sporanox) must be working. Holden's having a great day today. A far cry from the past 2 weeks. Not even ONE tear or tantrum this morning at Quest. No problems transitioning from outside to the therapy room. His therapist said he did great. Notes from therapy this morning:
-1st hour - was able to fade prompts and had numerous independent vocals for movie (mmm-ooo-eee). he wasn't always singing and saying but got vocal without help! was also able to fade prompts to a light touch on hand to get the sign for raisin. got 1 independent "bray bray" (what he calls raisin) vocal. worked on echoics (tata, ahhh, oooo). when holden was playing with balloons, did get correct for all 3. also got an approximate "balloon" and ask for balloons - sounded like "bahloo"!!! also said "mo" for elmo.
-2nd hour - good hour. worked alot on down - was able to fade out prompts to a model of the sign and he got the vocal many times ("duh" for down).
yay!!!!!
-1st hour - was able to fade prompts and had numerous independent vocals for movie (mmm-ooo-eee). he wasn't always singing and saying but got vocal without help! was also able to fade prompts to a light touch on hand to get the sign for raisin. got 1 independent "bray bray" (what he calls raisin) vocal. worked on echoics (tata, ahhh, oooo). when holden was playing with balloons, did get correct for all 3. also got an approximate "balloon" and ask for balloons - sounded like "bahloo"!!! also said "mo" for elmo.
-2nd hour - good hour. worked alot on down - was able to fade out prompts to a model of the sign and he got the vocal many times ("duh" for down).
yay!!!!!
3.30.2008
holden
I spoke to Dr. David last Thursday evening. We're switching Holden from Diflucan to Sporanox. I think the yeast is giving him a tough time. He's still extremely stimmy, unfocused, and hyper. His hand is down his diaper constantly. Dr. David said to expect a tough weekend, due to dieoff, if the new anti-fungal works. Boy he wasn't kidding. Holden was up last night until 10:30, when he finally fell over and went to sleep. He was a little maniac, extremely hyper. I even tried activated charcoal and he was STILL all over the place. A little less hyperactivity, but still going nonetheless. We'll see what today holds in store for us.
I've also ordered some digestive enzymes from Kirkman. We should start those this week once the order arrives.
We still have 2 challenge tests to do - with DMSA and DMPS suppositories. I haven't been able to do them because I didn't want to make the yeast problems any worse for him. I was hoping it would settle down and we could do one this weekend, but we'll put it off a few more days to see how he does.
He starts daily ABA therapy this week. 2 hours a day, everyday. Quest Kids has been a godsend to us. We could never thank them enough for the grant they've given us.
I've also ordered some digestive enzymes from Kirkman. We should start those this week once the order arrives.
We still have 2 challenge tests to do - with DMSA and DMPS suppositories. I haven't been able to do them because I didn't want to make the yeast problems any worse for him. I was hoping it would settle down and we could do one this weekend, but we'll put it off a few more days to see how he does.
He starts daily ABA therapy this week. 2 hours a day, everyday. Quest Kids has been a godsend to us. We could never thank them enough for the grant they've given us.
zoe
Her EEG came back normal. She hasn't had another 'episode' since the last one almost 2 weeks ago. Maybe it was a fluke?? I hope so. She's on Spring Break this week, so she gets a well needed and deserved break!
3.23.2008
a lot going on
Since my last post, Holden has had his 2nd IV DMPS session. He seems to be tolerating it well, I think. Some things we've noticed that he also did after the 1st IV - his appetite seems to decrease for a few days (which is not normal for him), he's a bit spacey, and he's very stimmy. Once all of this cleared up last time, he made some good progress and started doing things we'd never seen him do before. Good things. So, we'll see how the next few days go.
I know I don't write about much, other than Holden and his treatments. But, lately, we've been concerned about Zoe. She's had 3 episodes in the last 5 weeks or so. She'll wake up at around 4am and throw up. Then, she will continue to throw up every 10 minutes or so until around 5, 5:30am. No other symptoms. No fever. She feels fine the next day, and just before the "episode". It's strange. I've taken her to the doctor, who has ordered an EEG. We take her to the children's hospital tomorrow for the test. It's to rule out seizures. I pray she doesn't have seizures, and I pray that this goes away. She's such a trooper, that kid. I know when I was younger (and even now), I would get upset when I got sick. Lots of drama! But, with her, she just gets up and takes care of it on her own. Sometimes she doesn't even tell me she's sick. She never complains about it. She's awesome. Anyway, hoping we get to the bottom of what's going on with her soon. Poor chicken.
I know I don't write about much, other than Holden and his treatments. But, lately, we've been concerned about Zoe. She's had 3 episodes in the last 5 weeks or so. She'll wake up at around 4am and throw up. Then, she will continue to throw up every 10 minutes or so until around 5, 5:30am. No other symptoms. No fever. She feels fine the next day, and just before the "episode". It's strange. I've taken her to the doctor, who has ordered an EEG. We take her to the children's hospital tomorrow for the test. It's to rule out seizures. I pray she doesn't have seizures, and I pray that this goes away. She's such a trooper, that kid. I know when I was younger (and even now), I would get upset when I got sick. Lots of drama! But, with her, she just gets up and takes care of it on her own. Sometimes she doesn't even tell me she's sick. She never complains about it. She's awesome. Anyway, hoping we get to the bottom of what's going on with her soon. Poor chicken.
3.10.2008
speaking of roller coasters
You know how I said autism is a roller coaster ride? Well, here we go again. I posted that last night on here. This morning, we went to ABA. I sat in on the program today because I wanted to see how he was doing. His therapist told me that they were going to be changing his programs/goals, because he's mastered most of what they started with just a few months ago. And he's moving so fast with the echoics, they need to create a new program. Now THAT'S the kind of roller coaster ride I like!!!!!
3.09.2008
regression
I hesitate to title this post "regression". Holden's doing great still, esp. with the verbal imitation. He will pretty much at least TRY to say whatever you tell him to. It's clear that it's just not easy for him to get the words out - he will make a sound, and it's also clear that he thinks he's saying what you told him to say.
The reason I titled it regression is because the yeast has returned and he's very spacey, stimmy, and just ... out of it. I haven't seen him this way for a few months, so it's really hard to see. He's been on a 'high' for a few months now, and to watch him slip back into his own world - even though it's much better than before - is just hard. He's been back on the Diflucan for 4 days now. I'm suspecting that he's going through a die-off with the yeast, which usually occurs when you're trying to clear it out.
At the advice of the DAN doctor, we've held off on the 3 challenge tests we're waiting to do. We have everything we need to do them - but yeast can get worse during chelation, so we're giving the Diflucan time to work. It's hard to wait. You know your kid has crazy levels of toxins in his system and you know that you need to get it out, but you have to wait. I'm hoping to do one of the challenge tests on Tuesday. But we'll see how he is tomorrow first.
I told my husband that I feel guilty for complaining or even bringing up the fact that it bothers me to see Holden this way. Because, even at his worst now, he's better than his best about 7 months ago. So, yes, he's making progress. And I'm so thankful for that. But, as we all know, autism is a roller coaster ride and it's hard to go from a 'high' to a 'low' in a matter of days.
So, Happy Anniversary to us today! 3 years of marrige, 6 years of being together. This past year of our marriage has truly been a test for us. We're still here. Still married. And still very much in love. Thank god. I don't know what I would do without my husband and having to go through all of what life has thrown us by myself.
Zoe's taking the FCAT this week. The standardized test for 3rd grade. They've been preparing (or rather, scaring) the kids for a year now. She's nervous, but I know she'll do fine. She's so incredibly smart and intelligent and loving, and I could go on and on and on.
Jackson's 7 months. He's doing fine, developmentally. Holden also did fine at 7 months. But, every month that he's on track is a blessing. We'll continue to watch him and probably have a formal eval at 12 months. That way, if there's anything at all worth looking into, we can start even earlier than we did with Holden. Here's hoping we won't need to.
The reason I titled it regression is because the yeast has returned and he's very spacey, stimmy, and just ... out of it. I haven't seen him this way for a few months, so it's really hard to see. He's been on a 'high' for a few months now, and to watch him slip back into his own world - even though it's much better than before - is just hard. He's been back on the Diflucan for 4 days now. I'm suspecting that he's going through a die-off with the yeast, which usually occurs when you're trying to clear it out.
At the advice of the DAN doctor, we've held off on the 3 challenge tests we're waiting to do. We have everything we need to do them - but yeast can get worse during chelation, so we're giving the Diflucan time to work. It's hard to wait. You know your kid has crazy levels of toxins in his system and you know that you need to get it out, but you have to wait. I'm hoping to do one of the challenge tests on Tuesday. But we'll see how he is tomorrow first.
I told my husband that I feel guilty for complaining or even bringing up the fact that it bothers me to see Holden this way. Because, even at his worst now, he's better than his best about 7 months ago. So, yes, he's making progress. And I'm so thankful for that. But, as we all know, autism is a roller coaster ride and it's hard to go from a 'high' to a 'low' in a matter of days.
So, Happy Anniversary to us today! 3 years of marrige, 6 years of being together. This past year of our marriage has truly been a test for us. We're still here. Still married. And still very much in love. Thank god. I don't know what I would do without my husband and having to go through all of what life has thrown us by myself.
Zoe's taking the FCAT this week. The standardized test for 3rd grade. They've been preparing (or rather, scaring) the kids for a year now. She's nervous, but I know she'll do fine. She's so incredibly smart and intelligent and loving, and I could go on and on and on.
Jackson's 7 months. He's doing fine, developmentally. Holden also did fine at 7 months. But, every month that he's on track is a blessing. We'll continue to watch him and probably have a formal eval at 12 months. That way, if there's anything at all worth looking into, we can start even earlier than we did with Holden. Here's hoping we won't need to.
3.03.2008
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