10.29.2008

Doctor Visit

Today, Holden saw Dr. Rao for the first time. I spoke to the doctor last week about Holden's case, and today was his first visit. Aside from having to wait F-O-R-E-V-E-R, it went well. We discussed continuing chelation but are going to wait until we receive the lab results back. They did bloodwork today, and also an IV push of glutathione, NAC, and Vit C. He tolerated it really well - I was so proud of him! He cried, but once she got the needle in, he just sat and watched and ate his cookies. I have to send off an OAT test to check for yeast, a Neurotransmitter test, and the French test. Our next appointment is the 1st week of December. We'll discuss the results of everything and start chelating again. I'm anxious to get started again. We just finished another 2 months using EDTA suppositories about 2 weeks ago. I can always tell a difference in his attention, focus, eye contact, etc...when we're chelating. Then we stop, and it seems to all go away again. It's like the universe is playing some sick game with us. But, I know in time - we'll have him back to STAY.

He's also doing well in school. They call him their little "miracle 3 year old", and his teacher says he's doing great so far. He has some tantrums when made to sit at the table and "work", but he gets over it. Yesterday, I picked him up and he had on a cute t-shirt (that was too big) over his clothes that said "Fun Run". She said they had an event and he participated. He had a little certificate in his backpack folder that said he completed 4 laps. I asked her if he really ran and she said yes, that he had a blast running around with them. How cute is that?!

So, Dr. Rao asked me to keep a log over the next 2 weeks. Just write things down I notice since the IV today. We may need to do it every 2 weeks if he does really well with it.

More later....

10.12.2008

in like flynn

FINALLY. We have a house. We've been living with my brother-in-law, his wife, and their 6 month old for 2 months. And the house we lived in ... not so big. So, yeah, 4 adults and 4 kids, enough to drive you nutty! We found a place about 5 miles away and moved in this weekend. We don't have furniture yet, as we sold every thing we had before we left Florida. I found a couch on craigslist for $75, sleeper sofa. For now, it's me, Zoe and Jackson on the sleeper sofa. Dietrich and Holden in the bedroom on a cot-like pad on the floor. It sucks, yo. But, not near as much as it sucked trying to live in someone else's house with kids!

Holden's doing great in school. The first week, he cried every day when I dropped him off. Then by the weekend, he became "himself" again. Then on Monday, he cried worse than ever! By Tuesday, he was saying "HI!" when we pulled into the school. Wednesday, Thursday, and Friday ... more of the same. Smiles, and walking to class with his teacher after telling me "bye-bye". I love that kid!

Although he's doing wonderful in school, and still doing great in therapy (ABA), at home he's much more withdrawn. It's hard to watch. Yet, I know that it's just the changes that's going on. He's processing a lot...too much for him. And, although he can hold it together for 8 hours M-F, and then at therapy on Saturdays from 9:30-12:30 ... any other time, he's very withdrawn and to himself. I try to tell myself that he just needs 'decompression' time, and that all of this is so new to him. He's just having a hard time processing. I hope it's better, and soon.

With all that said - tonight, he climbed up on the sleeper sofa with me. Took the wooden train he has and I started saying "chugga chugga chugga chugga chugga chugga chugga chugga ... chooooo choooo", and would tickle him. After 1 time, he climbed up next to me and said "choo choo!". So, I did it again. He loved it! I love when he engages us. It really makes all this so worth it.

10.02.2008

school

I have to take a minute and brag about Zoe, first. She got her progress report today - which is the 1/2 way mark to her 1st report card. She has 5 A's, and 1 B!! I'm SO proud of her. Grades like that after a move like we've done recently, staying with family, her sleeping on the floor in a sleeping bag for 2 months, and dealing with her little brothers in the same room! I think we can all learn from her.

Holden started school this week. Today was his 3rd day. He's been placed in a "Communication Skills" classroom with other kids with autism. There are 5 kids in the class, 1 teacher who is a behavior analyst, and 2 aides. Holden is the youngest kid in there, as they can range from pre-school up to 5th grade. Today when I picked him up she called him her "miracle" 3 year old. She said in 7 years, she's not seen a 3 year old do this well the 1st week. This is what his report for today said: Holden put large and small pegs in a pedboard, copied actions on the Wiggles video & ate 2 helpings of turkey breast at lunch. I can't really explain how good it feels to read something so .... normal.