Thursday, December 31, 2009

Things 2009 gave to Me..


12 months of obsessive compulsive research.

11 months of biomedical treatment

10 months of keeping mileage records and every single medical reciept(from the point we realized we’d be itemizing medical expenses this year)

9 months of the school district on their toes

8 months of calling the insurance company twice a week.

7 months of ABA therapy at Alpine

6 different doctors for Dominic (not including the dentist)

5 date nights with my husband

4 different babysitters who work well with Dominic

3 months of post H1N1 intestinal issues that no one seems to be able to fix

2 weeks of “YES”’s

and one sweet little boy who makes it all worth it in the end.


Thanks for being around to support us through this year. We hope that 2010 is far more even keeled and forward moving.

Monday, December 28, 2009

Another poop post. You can feel free to skip if you like...

So... the horrible diarrhea has not abated. At all. We did a round of activated charcoal - nothing. The poor kid's poop is VILE smelling, explosive, mulitcolored liquid with assorted undigested food in it.

I called the lab today to find out how much longer for the stool test results. They got the test kit Dec 18, and it takes 7-10 business days to run the testing (they have to grow fungus... and such), so we're only on day 5. At least another week, i'd guess.

I called the doc's office to talk to the med. assistant about it, but she was with a patient.

So i called my master herbalist friend, Joan, who has helped us before to pick her brain. In talking with Joan, her take on diarrhea is that chronic stinky liquid diarrhea is actually a sign of severe constipation - something is plugging him up so that only liquid is getting through. Something has SO coated his intestines that food isn't being digested. Something is in his gut and needs to come out. Period. So her take on it is we need to shift gears and focus instead of plugging him up - which is clearly not working - on emptying him out. We talked about a couple of options, and the gentlest is going to be good old fashioned prunes.

So while we wait for the stool test to come back to show if there're any weird pathogens going on, we'll be feeding Dominic prunes and giving him prune juice. Kiddo's " juice" is now a cocktail of prune juice, aloe juice, glutathione, zinc, cod liver oil, and a splash of real grape or apple juice. *yum*

For the record, we got 3 flavors of prunes today from safeway - plain, "orange essence", and "cherry essence". Interestingly enough none have nitrates. I got one orange and one cherry into him. He cried when i tried to give him the plain ones. I got about 4oz worth of prune juice into him, but he refused a second "cocktail" at dinner.

So, no diarrhea for me tonight. Which is odd. Normally there're 3-4 bouts of it in the evening (we think he holds it). And at least 2 in the morning. So we'll see what tomorrow brings.

in hindsight, it does seem more likely that he'd be constipated - this is the kid who as a nursing baby pooped one day a week. And when potty training, held it and really only went once a week... and who up until he had the flu had multiple times per week that he clearly had issues going.

we'll see. prunes won't hurt him, tho. And if we need to up the ante a bit, Joan's got a couple of lower bowel herbal formulas we could look into

Friday, December 25, 2009

And to all a good night....

I am tired, so this will be fairly stream of consciousness, but i'm overdue, so here goes.

We're having a good week. We started OSR in a tiny dose on monday, and so far don't really see anything. dominic had kind of a high energy morning, but that could be attributed to the nitrates in the salami we let him eat last night. His tummy is still a mess - no change at all from stinky explosive liquid poop. We hope to have the test results back from the last stool test and REALLY hope they find SOMETHING that is treatable. I stopped Vit. C as well, hoping maybe that was it. Nope.

Dominic made out for Christmas. Thank you to all who sent presents. He opened them last night with the inlaws over and had to sleep with his new cars from his buddy Logan.

As you can see, he is still doing the imaginative play. apparently the horse needed to be hitched.




The yes's continue. Little less today than the rest of the week, but that might be the nitrates. Might also be the OSR. No clue. We'll track it.

At the Alpine Christmas party on Wednesday, he had a major meltdown (because i was there for the family party, and me being there usually means its time to go, and it took a good half an hr for him to calm down). BUT, the therapists there all heard a TON of talking during that meltdown, mostly requests to leave. And they got to hear him say YES without pairing it with a noun, which they were all excited about.

Insurance is being... pesky... about the Oct claim. They have it under review. So frankly at this point, I'll be glad to get anything they send, and everything they send will go directly to his therapy. For now, we've committed to keeping him there all of 2010 and HOPE to be able to continue through the end of Aug 2011, then segue him into all day first grade. We'll see. We'll hope.

Christmas eve and day, the entire extended family came over and some friends, so we had 8 for dinner last night and 10 today. Dominic did SO WELL compared to last year. Last year, he would barely interact, and in fact ran off crying when his cousin tried to sit with him. This year, they played really well the whole time.

Here he is putting together a HUGE floor puzzle of Nemo.



Here he is hamming it up with his cousin.


Friday, December 18, 2009

update on our busy week...

Friday the 11th - last Friday special preschool class of the year
He did great, and had fun. he generalized YES here as well

Saturday the 12th - fasting bloodwork visit (fun)
this wasn't so fun, but we got it done.

Monday the 14th - physical w/our primary doc to make sure he's peachy for oral surgery the 18th
He was peachy. Took the physical to the dentists office, paid them, signed paperwork and that was that.

Wed the 16th - last day of preschool this year and December parent meeting at Alpine to talk progress.
Preschool sent home a present from Dominic to us. We'll open on Christmas. And a present from them to Dominic. Very fun. The parent meeting went well at Alpine. They're still tweaking his colors and shapes programs because he's just having a hard time getting the concepts behind something being a color or a shape. We're kind of hoping that the neurological reconnection we have seen with the YES thing will happen for shapes, colors, and time.


Friday the 18th - oral surgery. (fun)
Not so fun. He ended up with 8 fillings instead of 6 and woke up really angry and disoriented. We can tell he's in pain, and are hoping that as the anesthesia and narcotics wear off (they gave him phentanyl) he'll be less out of it. Surgery was 2 hours late in starting due to an emergency in the OR before us. So we got to sit and wait.... and wait... and that was probably the most frustrating part.


We ended up doing another stool test this week because Dominic's poop is still vile colored, mostly liquid and horrendous smelling. We did a 3 day test w/parasitology, which i fedexed off yesterday. The instructions were to do a double dose of activated charcoal 3 days in a row after doing the stool test to see if that firmed things up at all. Which was good timing since AC pulls out everything, we're using it today to pull out the toxins from the anesthesia.

Wednesday, December 9, 2009

and we have generalization....

The YES thing has generalized... he's doing it now "lots" at Alpine, and did it for our OT tonight. He hasn't had preschool since it started (weather cancellations and delays) but i expect it'll generalize there too. Exciting stuff.

Next year, we're going to only be doing private OT every other week (new insurance is limiting us to 30visits per year), and our OT is pretty excited because at 2x a week, she's seeing new developments in him every session, so she's expecting HUGE changed every session when we go to 2x a month.

the rest of the month shakes out like this:

Friday the 11th - last Friday special preschool class of the year
Saturday the 12th - fasting bloodwork visit (fun)
Monday the 14th - physical w/our primary doc to make sure he's peachy for oral surgery the 18th
Wed the 16th - last day of preschool this year and December parent meeting at Alpine to talk progress.
Thursday the 17th - gingerbread house construction w/Daddy
Friday the 18th - oral surgery. (fun)
Wed the 23rd - last Alpine session of the year AND Alpine party.
Thurs the 24th - we'll start the OSR protocol (starting it while he's off school just in case...)

Then we're hosting the family christmas eve and day stuff.

BusyBusy.

Saturday, December 5, 2009

yes.

so, one of Dominic's biggest IEP goals has been to appropriately use yes and no. Seriously, the boy has not been able to say yes or no in like 2 years. he totally lost the concept of replying to something in an affirmative fashion. The past few months, he's done really well imitating us saying yes, but his way to be affirmative is clearly to repeat the noun.

For example - Mom: Dominic, would you like some more juice.
Dominic: Juice, juice.


Anyway, once a month or so, we'd get a very quiet independent yes out of him.

This morning, our conversation went like this:

Dominic: juice juice
Me: What about it?
Dominic: juice juice
me: did you want some more?
Dominic: juice, juice....... yes.

clear as a bell, he gave us an independent, non-imitative yes.

And he's done that since then at least 10 times - there is a pause, but he's independently saying yes. Its going to be really interesting to see how/if it continues, but this is a HUGE shift. Seriously, he has said yes so infrequently in the past year, that we can count the times on one hand.

For now, tho, since nothing else has changed in the past few weeks, I'm chalking one up to the biofilm protocol