it's been a long time!

I haven't been able to post much. We moved the weekend of August 1st. We're now in Carrollton, Texas (DFW area). Staying with my brother-in-law and his family, so getting online is pretty scarce for me right now. Hoping and praying with all I have that we can get into our own place soon. But, for now, we'll deal.

Update on Holden. Last time I wrote, we had just done a challenge test. Those results showed elevated lead (again), and some mercury - although not elevated this time. We had a doctor's appointment the day we left Florida and Dr. Berger suggested that we continue with the suppositories. We are going to do another 2 month round of suppositories, then a challenge test, and we'll see where to go from there. At that point, I'm planning to start IV chelation. I knew it would be too hard to do that when we had just moved.

Speaking of the move. The first week was pure HELL for us. Holden came down with a stomach virus the night we left Florida. We drove straight through, and he puked straight through. It was horrible. Once we arrived, it just went from bad to worse for him. Although he slowly - and I mean VERY slowly started to feel better physically - he was having a really hard time with a new place. Everytime we would drive up into the driveway, he would cry. Everytime I tried to bathe him, he would cry. He cried pretty much constantly for the first week. He wanted nothing to do with us, except for when we left the room. Then he would chase us, as if he was afraid we were leaving him in a strange place. Slowly, he began to get better, and now that we've been here 2 weeks - he seems to be adjusting. No more crying. No more than usual, anyway. I'm beginning to see my happy little boy again.

The first Saturday we were here, we had to take him for bloodwork to check his levels. Most importantly, his liver function. He's on sporonox everyday, so it's important to make sure his liver is functioning as it should be. We're awaiting those results.

We also stopped the TD Glutathione cream. Instead, we moved to Glutathione suppositories. He gets one everyday. And, every other day, he's getting the EDTA as well. So, every other day, he gets 2 suppositories. Thankfully, he doesn't really fight me anymore. Poor kid. I think he just knows there's no use in fighting me on it...it's going to happen anyway. He does really well on IV Glutathione, so I'm really hoping he responds well to the suppositories too. I think he will. Last night was our 1st EDTA suppository for this 2 month run. He seems to be okay so far today. I am making sure to supplement the extra minerals, as well as the Taurine. Hopefully that will help.

We have an appointment with a place in the area called The Woodall Foundation for Kids on Tuesday. They will do a Speech eval, as well as an ABA eval. He'll be receiving services through them, but I'm not sure how many hours quite yet. We got his discharge summary from Quest Kids in Orlando and it was great to read (see). Here's an excerpt:

During his time at Quest, Holden acquired an abundant amount of new language and gained numerous age-appropriate skills. his vocal repertoire developed from babbling to and 3 to 4 one-syllable letter sounds to 2 to 3 syllable word approximations and nearly 20 letter sounds and combinations. he acquired several new mands, vocally as well as with manual signs. Holden also learned new gross motor imitations including clapping hands, stomping feed, and holding his arms out in various positions. Holden acquired the receptive identification of several body parts, and correct responses to some intraverbals including animal sound sand appropriate vocals for play. The most notable amount of improvement was made in the area of object imitation. Over the last eight months Holden's rate of acquisition also showed tremendous progress. He went from acquiring approximately 7 new skills each month to nearly 12 per month. Holden is a very bright little boy who made magnificent progress in a very short amount of time.

So, it felt great to read that and realize that I'm not crazy. My son is improving. It may be slowly, but we knew there was no quick-fix when we started this journey.

More later!

1 comment:

Mommy2Kyler said...

OMG. I had to comment on your blog. I just moved to Texas (Dallas area) this past July from FLORIDA (Bradenton/Sarasota area) too! My son is 18 months old and is somewhere on the spectrum.... Anyway, I'd LOVE, LOVE, LOVE to find a way to contact you. We're seeing a DAN doc who is actually near the Carrolton area. I would love to hear about Dr. Rao. I'm also part of a Mom's group that is based out of Plano/Carrolton (though I think I'm the only one with a child on the spectrum). I'm soooo struggling trying to figure out if I'm doing the right biomedical treatments. It's so hard. We just started MB12 this week. No progress yet but I'm keeping my fingers crossed. Well, please feel free to visit my blog and send me an email.