Sunday, March 22, 2009

DAY 122

Met with TCM Dr yesterday for an exam, but Ty was very uncooperative. He did get a good look at his tongue and it was much improved from photos I had sent him several weeks ago. All "raspberries" on outer perimeter are gone and he said color looked great. Ty wouldn't let him check his lungs (but Ped. did a few wks. ago after mild pneumonia episode and said they sounded clear), nor would Ty let TCM Dr. take his pulse. Too bad. But overall, he felt he looked really good. Circles, that were red, under eyes also looked normal per Dr. and we haven't seen Ty's butt rash in over a month I believe.
We are collecting a 24 hr. urine sample today to send in for a UTM. We haven't taken but two the entire time on TCM and they were both unimpressive (however so were his IV chelations last Summer, so I am fairly confident we have gotten the majority of his toxicity down.) Still should be interesting though, as I have never done such a lengthy collection for testing!
Ty has been producing some very interesting sounds today - while babble is down today, he is coming out with some things we have never heard, like loud extended "oh's" and other approximations that are very controlled. Just different from the jibberish we usually hear. He did echoic "Bo" several times, which is the name of our dog! That is new.
We have taken Enhansa up another 75 mg. , so 1.5 caps a day, 225 mg daily. So far so good!

Friday, March 20, 2009

DAY 120

Just got back from a 4 day trip to Austin to visit friends and Ty did great. BM potty success the entire time and slept every night through. Woo-hoo! We tried to add back methylation supps last week and things went nuts - shredding came back to boot. So, of course, I pulled them! We are at 1 cap of Enhansa and that is going well. Echoics continue to be strong, truly longest "pre-verbal" has stuck, EVER! We may get language yet. Hearing tons of "no" (sometimes articulated "na") when he doesn't want something, and an actual appropriate conversation, albeit small -
He climbed into my bed at my friend's house the other morning and said "up" trying to get me out of bed, I said "no, lay down" and he said "na, up" and I laughed and said "no, night night" and he said "niy-niy, shhh..." waited a moment, and then said "up!" LOL! His babble is very appropriate, about the 9 mos. level - running beautiful sounds, some new - I really think we may finally be getting somewhere!

Thursday, March 12, 2009

DAY 111

Well, we survived IEP hell, and his teacher showed her true colors to the end - we really need a classroom change! Will be having that discussion this Spring and another ARD scheduled, since he is slated to have another year in her room next year!
But on to Ty - whoa - I don't know, but have to give a thumbs up to Enhansa where language benefits are marked! Ty sounds great! This is the first time in a year that "preverbal" is sticking for this length of time. His babble is fabulous, he is saying "no, no, no" spontaneously when he is upset enough to muster up an opinion, and his target words and sounds are perfect articulation. I love it! We just today took his Enhansa from 75mg to 150mg again, and no aggression like when we increased a week ago. Let's see if it holds.
Picked up a new batch of tea yesterday, and Dr. wants to attempt another exam on Ty. Up until now he has been relying on my testimony.. next week is Spring Break, so I will bring Ty in for hopefully a compliant tongue check and pulse. I still don't know exactly what the tea is doing, but I continue to see full BM potty trained, good looking stools, and nice joint attention. We are surviving on 20 supplements instead of 90 and overall, things are calm and progressing, although we have noted some ups and downs, lately things are great (knock on wood!).

Saturday, March 7, 2009

DAY 106

just a quick note - parents watched Ty today for 3 hrs. I have noticed a major increase in babble and better articulation lately, but didn't mention it to them. The first thing they said when I asked "how was he" was glowing reports of magnificent babble! This is great - truly objective. I have to say I think it is falling back on the Enhansa! The change seems to correlate with that introduction! Whatever, we'll take it!

Thursday, March 5, 2009

DAY 104

I let Ty sleep in this morning since he played in bed until 11pm after his late nap yesterday. He woke up at 7a and was very vocal. Good babble with excellent articulation. I am currently in IEP hell - so not much else to report for now until this storm blows over, lol.

Wednesday, March 4, 2009

DAY 103

Ty awoke fever free, albeit early (430a again), but not surprising as he slept almost the entire day yesterday. While lying in bed with him (I wasn't getting up that early!) I worked on echoics half asleep, lol. He had some of the best articulation I have heard - mom, dad, night night. Then later this morning I had him try to say "bed" (a new word) and much to my delight, he said it. Hubby was shocked..."I heard that?!!" What is really cool is that he used the ending "d", very clearly. So when I was running some of his word cards later in the day and got to "bread" he signed it, but usually doesn't attempt an echoic for it.. I prompted "say it" and he DID, hitting again the "d"!
Fever returned in the late afternoon, but he was fine after a nap and no motrin at night.

Tuesday, March 3, 2009

DAY 102

Ty awoke at 430a and came to our bed - he was miserable, couldn't settle in and wanted to snuggle close. All morning he was like this and completely lethargic and pale, so I took him to the Dr. A double ear infection! AGAIN! His last one was just on 1/10. I had him do a flu test, as Ty looks terrible (Dr agreed he looked much worse than just an ear inf.) but it came back negative. He has been sleeping all afternoon. Dr put him on Omnicef antibiotic, which in the past has done wonders for his strep gut bacteria and he usually looks great on it! We'll see - but I am concerned with the back to back ear infections. He hasn't had one in years and now this.

Monday, March 2, 2009

DAY 101

Ty was very tired this morning - he had fallen asleep early last night and awoke in the middle of the night, but stayed up for an hour and settled himself back down. He had a great day at school they said, but tired out around 2pm. He was fine afterschool but ran a 101 fever again around 6p and took a nap, (ugh). His face is kind of splotchy, some red patches, but after nap, no fever. Not sure what to make of it - as usual! Certainly the most fevers we have seen ever!!!

Sunday, March 1, 2009

DAY 100

Put all of his sign or say words on cards last night and ran through them. Nice echoics and decent signing, going to work these to death and see if we can't get some spontaneous use of them! Fell asleep on my bed early last night (around 830p) and slept until 730a!
Lowered enhansa to 1/2 cap and no aggression today. Pretty mellow day, though requesting is down - he is pulling us to everything, but won't sign when we get to intended item. His Go Talk has been at school during eval. and I can't wait to get it in full swing at home this week. I think this will help spontaneous intent.