since we're in a holding pattern...

Here're some pictures of how we spend most afternoons. First, Dominic being SILLY in the infrared sauna. In theory, his whole head is supposed to be out, but he's taken to sitting in the bottom of it playing, and only sticking his face out when he wants some water or a breath of cool air. Note the sweaty bangs.



And here's a side profile of Dominic in the Hyperbaric chamber. Its actually pretty roomy, given that I'm on the other side of him in this photo.

The detoxing... off the charts...

The last 3 nights in a row Dominic has been so sweaty at 10pm when he gets up to use the bathroom that his pj's have WET SPOTS along his back and chest. His pillow cases are soaked.

Both Thursday and Friday in the HBOT chamber (in a 65 degree room, mind you), he sweated so much that the entire inside of the chamber had a layer of condensation on it. (this is a new phenomenon, until this week, it was only the windows that were getting a bit of condensation)

We went ahead and picked up a nutreval test which we'll do the week he's off school in July. We haven't done one in about 18 months, and what we're hoping to show is that we can start reducing the frequency of the B12 shots. Right now we're at 3x a week. I'd like to drop it to 2 and eventually to 1. We're also going to do another post provocative urine metals test (we've now finished a whole bottle of NDF+ and it'll be interesting to see how everything is looking). I'm hoping to be able to phase out the zinc and lithium, too. Goal is to get him down to where he's just taking a good multivitamin, fish oil and probiotics. As long as the detoxing is this significant, he'll be on liver support. and we'll keep detoxing (hbot, cytoflora, and ndf+) until he stops the night sweating.

His gut appears to be healing. He's not having diarrhea nearly as often (its still there tho, especially if he holds it all day and doesn't go at Alpine), and his poop doesn't look yeasty anymore. We aren't having yeast die off behaviors after HBOT anymore either. (we did for at least the first 20 sessions, which from what i've seen online is much longer than average). He's off almost all the antifungals (only one left is MCT oil, which is very gentle), and we'll probably come off that one too here shortly.

his daily reports from Alpine continue to show his verbal attempts per 90min session to be between 120 and 150 (in April, they were shooting for 80... in May they were shooting for 100, so once we get the average back, I am guessing its going to be another nice jump_

more tidbits...

Dominic is sleeping peacefully on his new twin bed, with the CARS sheets Daddy bought him today. No problems at all transitioning him to the twin bed from the queen futon.

Said futon has been drying (it was damp. lovely) and i just vacuumed the heck out of it. I got 90% of the white moldy looking stuff. It's going byebye, but i still feel like we should make an effort to clean it.

I have a witness to Dominic speaking in short sentances. He's been doing it at HBOT all week while sitting in the infrared sauna - he likes to play by unzipping the hand slot and sticking his foot out for me to tickle. Generally when I tickle him, I say "i'm gonna get you..." which is followed by hysterical giggling on his part. So he's been sticking his foot out and saying "igetchoo". Mr B at HBOT is a witness. Today Mr B left the room for a phone call, and I would just about swear Dominic said "Where is He"

all very gobbledegook, but its coming.

His therapist today made mention of his free operants just shooting up on the graph crazily, so again, going to be super interested to see June data. I know today he had 147 FOP's in 1 90minute session. For Reference, in April, he was struggling to get 80.

and now for something completely unrelated to Dominic....

So, years ago, when we first put our chain link fence up, we put it up along the same line as the old, falling down, wood fence. LAter the neighbor behind us told us there was an easement and he didn't have a fence on his property line, but that the middle area belonged to the city.

That man died several years ago, and a young couple has lived behind us for about 2 years now. They have decided to enclose their yard with a privacy fence.

Fast forward to yesterday. Rod caught the husband CUTTING DOWN our hops vines growing on our fence. They had a verbal altercation. Husband didn't apologize. Rod called me furious that we'd lost about 80% of our beautiful, lush vines.

I have BABIED those hops. And they RIPPED them down. This does not please me.

So, I called the city, and got the real estate office (who knew we had a real estate office) to check the plans. There is a 12ft utility easement - 6ft on either side of the property line. The woman advised we have a survey done. I schedule the survey for this morning. Last night I went over and suggested to the wife that they stop working on the fence while we figured out where the property line was, and told her the whole easement story. At least she apologized for our vines being decimated. anyway, survey says... our backyard is acutally 8 feet deeper than we thought. Which means the fence they wanted to butt up against ours, will be going 8 feet into their yard. I'm sure they will not be pleased, but we had it done by an independent surveyer. We're getting some quotes to move our fence, i'm pretty sure we won't be able to afford them, but we may at least take down the chain link if we can ensure the yard would be fully sealed once they put up their new fence.

And i would've NEVER bothered calling the city (or paying for a surveyor to mark the property line) had they not ripped down my vines.....

this and that

Sunday, I got to meet DaMomma (www.damomma.com) and ended up needed to take Dominic with me as Rod had another commitment pop up. Since I knew that starbucks would have NOTHING he could drink, we stopped at Jamba Juice and got him an all fruit smoothie. He did SO well sitting at Starbucks while I visited with DaMomma. He actually interacted nicely – he sat with them while I got my drink, answered a couple of questions, and generally did good. Towards the end, he got squirrelly, but I’m sure he was completely bored.

Monday, Alpine finally got him to poop there. It only took gummi bears and thinking he was alone (they prop the stall door open instead of giving privacy, so she closed the stall door and then opened/closed the outside door so he’d think she’d left. And waitied, then opened and closed it again and asked if he was all done. And he was. ) so that’s a relief.

And OMG, Mold. We found MOLD on the underside of Dominic’s futon Mattress. Cue panic attack (Mold can be a contributor to all kinds of immune and neurological issues). Dominic’s gradutating from a futon to a twin bed very soon. Tomorrow while he’s at school, probably (we’re picking it up tonight, thank you Tiffany for happening to have a bed getting ready to go to Craigslist…)

May Data Graph. Not our imagination.

So I sat down and graphed the data from May. Its interesting, over the past several months, I’ve specifically graphed 4 data points from each type of verbal attempt per month. Human nature and alll, I’ve done my best to make sure they were from better days.

So this time I realized that Alpine has been giving us daily averages, too, for each month, and thought it would be interesting to see what that looked like.

And WOW, can you tell a big difference in MAY in all the areas. Remember, the only change we made in May was to add HBOT. And at the end of May we were only completely 11 or so sessions.

Check them out:

Tacts are labelling. I've noticed spontaneous labelling going THROUGH THE ROOF the past week or so at home. Specifically, now when we read a book at bedtime, Dominic will label pretty much everything on the page without having to have me say it first. HUGE shift. HUGE.

Manding is requesting.

This last one is Free Operant pairings - FOP's are any verbal attempt


Its not just our imagination, we are seeing good things!

(even with the occasional meltdown)

Bad Day and May Stat's....

Dominic had a really rough day today - he's developed a bit of a phobia about pooping anywhere but home and I got an email from Alpine that they could tell he had to go but was refusing.... I tried when I got there to no avail. He had a totally swollen tummy, too. And he was MAD that we kept trying to get him to go.

So we were scheduled for HBOT after Alpine. I got Dominic in the car to realize that he'd had his worms (the fricking things that i'm starting to hate) in the pocket of his backpack that has holes in it (duct taping commencing) and he was missing 2. He threw a fit in the car. We get to the HBOT parking lot and he refuses to get out. I have to manhandle him to get him into the bathroom there, where he throws himself on the floor demanding WORMS. I tell him we're getting ready to go see Mr B (the HBOT operator he adores) and he cheers up. We head in there, only to discover that Mr B is in Denver and its his wife - who we'd never med - running the show today. Dominic's face FELL and he went into full blown meltdown.

AFter much grinding and gnashing of teeth, i manhandled him back into the car and we came home, where he rushed inside and locked himself in the bathroom. I have a headache now. And he's watching Dora.

anyway.

In Dominic's bag were the stat's for May. I don't have time to graph them, but the numbers were like this

Spontaneous MAnds (requests) (avg per day): April - 43 May - 61
Spontaneous tacts (labels) (avg per day): April - 14 May - 20
Free Operant Pairs (verbal attempt) (avg per day): April - 151 May - 180

His behavior issues also went down, and he did well on a number of programs.

June will be very interesting.

20 visits into HBOT… 21 to go (in this round)

And we’re making great strides.

Dominic seems to be ramping up on another round of detoxing. Remember, his normal detoxing mechanism has been his skin 0- every time we ramped up with curcumin, liver life, cytoflora, and NDF, he’s had massive night sweats. He’s been drenched in sweat at night the last few weels and yesterday he was VERY sweaty in the HBOT chamber. I knew it was steamy in there when my glasses wouldn’t stop fogging up… but the comment our HBOT dude made after we got out was that Dominic was sweating at a level he’s not only never seen in a 43lb child, but at a level equal with a cancer patient detoxing chemo.

My theory is that he’s got yeast at a cellular level in his body, and because yeast are anaerobic, each new cell that is over oxygenated by HBOT has to have the yeast die off and be detoxed out. And given that every HBOT session, the oxygen goes a bit deeper… every session we get more detoxing done. That would also explain why we’re still seeing the behavioral and poop signs of yeast die off.

I’m on pins and needles waiting for the May report from Alpine. We should see it this week or next. What I can say is that the April report said he was still struggling to master 80 verbal attempts per session, and we’ve been regularly seeing now 100-120 per session in the daily communication log. We’ve also been getting reports of lots of tacting (labeling) which is exciting because those’ve been really low numbers.

Dominic’s SPED teacher for next year got to visit Alpine today, and she will go back the end of the summer with the para that will be working with Dominic. She really enjoyed seeing the kinds of reinforcers he like (mostly toys and water, we’ve been lucky to mostly stay away from food based). In talking with her, it sounds like half of his mornings will be spent in the regular kindergarten room and the other half will be spend in the SPED resource room. We’ll see how it all pans out.

Our current plan is still to stay with Alpine through next summer, and then in first grade to have him entirely with the school district. We did some playing with numbers last night, and believe we can do another 2 rounds of 40 HBOT visits after the current one if he needs it. It’s a really good thing I can stretch a dollar until it begs for mercy.

Dreamnight at the Zoo, 2010

The zoo was great fun. It'd been a while since we'd gone (we had to let our membership go this year, just weren't able to renew it).

We decided to avoid the throng of people who started at the giraffes and go backwards this year. That meant We were first to ride the horses. no line. yay!

He has NO attitude at all. None. Really.



After the horses, we saw the peacock. All was well with the world until the peacock sqawked, and Dominic screamed and jumped a foot. It was actually really funny.


After the peacock incident, we had some dinner (hotdogs, nothing exciting), and proceeded to play with the skunk. It took Dominic a bit of time to get comfortable, but he really enjoyed petting her. And she was mightily curious about the maggots in his hand (the ever present glow in the dark things he loves)


On our way to see the otters and bears, we found the moose in his pond.


We spent some time with the otters and then headed for the grizzlies. They gave us a good show - apparently they get frisky in the evening. Here's one hanging out with Dominic. Big feet.


We meandered down the hill and saw a nice volunteer bottle feeding an 8 month old wallaby. (looks like a small kangaroo)


By the Elephants, there was a car to get in.


But the motorcyle was not NEARLY as interesting


He got to be all by himself this year for the train ride (since by this point, everyone else was mobbing the ponies)


The meerkats were hilarious, as usual.


And no visit to the zoo is complete without feeding the giraffes.


Overall, a good time. And this year, the zoo got t-shirts in kids sizes. Amazing concept...

Argh. This should not be this hard.

So, The Resource exchange emailed me a few weeks ago. They needed a copy of Dominic’s IQ testing, by June 1.

If you responded, “what IQ testing?”, you responded correctly

Apparently they need him to be documented as having an IQ under 70 after age 5, but before age 6, in order to keep him on the CES waiting list. We’re number 295 out of 300 on the wait list, so we’ve got at least 3 years before we could see anything from the CES waiver. We dearly hope we won’t need it, but we don’t want to lose the chance if we do.

So I started trying to find out who would do an IQ test for an essentially non verbal 5 year old.

First stop, the schools. We got his big triennial IEP scheduled for early December, but because they have him documented as having a physical disability, they will not be doing cognitive testing.

Second stop, the list of approved testers that TRE sends out. Called all 7 of them NONE of them take our health insurance. One of them was willing to talk to us about maybe being able to do it. But she’s $200/hr, out of pocket. And believes that there will be 4 appts (1 intake with just parents, 2 with dominic, and then a followup appt to give us the results. If we want a typed report, it will take another 2 hours of her time). Hello $1000 for a piece of paper? Seriously? We do have an appointment with her, but really hope to find a better solution before that appointment (which is the beginning of July)

Third stop, I contacted my friend on staff at the CC Psych department for some ideas. She reached out to one of the clinical psychologists on staff to get some ideas. The local ideas don’t take our insurance. So I ended up calling the Denver Childrens hospital. They COULD do an IQ test, BUT they won’t do it unless they do a full diagnostic workup. We don’t need (or want to pay for, or want to pay copays for) a full diagnostic workup. Their intake nurse very kindly sent me a list of Denver Area folks who could do the testing.

I called the first one on the list. They don’t take our insurance. They said that apparently there’s only one neuro-psychologist in Denver who works with young children who does. I left him a message.

By last count, I’ve called at least 25 people about this.

So I went digging back in the file folder languishing in my laptop bag from early January when I was trying so hard to get Anthem to cover Dominic’s Alpine bill. I had the direct line for a team lead in the Anthem behavioral health dept. I called her, fairly convinced she would have no clue who I was. Nope, she not only remembered us, she was like, oh, Joy, I remember you, how’s Dominic. Blew my mind. Anyway, she’s now made it her mission to find me someone capable of doing this test, in Colorado Springs, who the insurance will pay for. I believe the way Anthem works is if there’s no one within a certain mileage who is in network that can do it, they agree to cover the out of network charges at an in network rate, but I didn’t confirm that with her. This is just nuts.

Weekend Roundup…. it was busy

This weekend was really busy for us, AND the first real (eg, more than an hour) road trip we’ve taken with Dominic in well over a year.

Friday, he had HBOT after Alpine, and then came home, had dinner, and went to bed.

Saturday, he had HBOT at 1pm, then came home, and we had a cookout with 15 dinner guests. He did great for the cookout, some good interactions with our guests. Played well, ate beautifully. Our friend Jen actually heard him say “NO” when I told him to come inside – she looked at me and said “is that Sass??”. Yeah. It is. He was in bed fairly close to his normal bedtime tho.

Sunday, we had planned to drive up to Estes park to go to a wedding with a friend who stayed over Saturday night. Apparently she came out of the bathroom and completely surprised Dominic while he was eating breakfast. Dominic did great for the car ride both ways (3 hours each direction) and about as well as we could’ve expected asking him to sit still for an hour long wedding, outside, with all sorts of other distractions. He was squirmy, but no loud squealing, and no tears so we called it successful. He did fine at the reception, ate his weight in food (on a side note, the chef had NO problem making us some un-buttered rice – amazing what they do when you tell them you have a kid with a food allergy. I’m convinced they all immediately think anaphylactic), and did some dancing with the band. It was cute. He stayed awake all the way home, too, which was a surprise. We basically gave him his bath and put him to bed when we got home and it was about an hour after bedtime.

Monday the plan was to relax in the morning and then go over to a friends for a cookout in the afternoon. Then Rod was going to teach a class in the evening. Dominic normally loves this friends house because of the chicken coop. This time, he was just frustrated, and scared of the coop, and refused to interact, and cranky. I think it was just too many days in a row out of routine.

Today is his last day off before full days start at Alpine. It will be a good thing, but likely a shock to his system, so we’ll see how it all shakes out. We have HBOT today, Wednesday, Thursday, and Saturday this week. Friday night, we are taking off of HBOT to attend dream night at the zoo again since last years was so much fun.
Look Here
and Here


This week also marks the beginning of the supplement phase down. It'll be interesting to see how it goes...