Thursday, January 5, 2017

BUH BYE DAY ONE!

Well, that's it in a nutshell (pun intended)--- HE DID IT!!!! As of today he completed all the doses a good portion of people are able to complete on the very first day (the day of rapid desensitization). It only took us 67 days- but we got there!

Earlier today, I looked up the weather in Suffern and it said that snow is expected tonight.  I was soooo grateful that the snow wasn't to start until after 10 giving us clear weather to drive in! We even pulled up to the building at precisely 4:15!!!!
I got this mom!

 I was (once again) not 100% confident that he'd be able to updose since he started yet another cold. They did the regular lung function test they do before an updose and Coby seemed to get it 'up there', but then they told me they needed to perform additional breathing tests on him. I was beginning to think that we would not be allowed to updose after all and that maybe his cold was worse than I thought and perhaps his lungs were not okay...
"Blow out the candles" (again & again & again)
Having him inhale some of the 'poofing' medicine before
continuing on with part 2 of the test

Between part 1 and part 2 of the test we went back to wait and wonder. The doctor came in to talk about "Coby's coughing fit after his last updose and the basketball game." 
"HUH?"
"Dr. Selter said you called to discuss this." 
"No I didn't." 
"Then your husband did."
"No he didn't. The only time he called this week was to tell you we won't be here for our appointment on the 26th."
"Are you sure?"
I pull out Coby's 'reaction log' and show her, "he never had a coughing attack after dosing thank goodness, just the regular itching and lip swiping."
"Does Coby even play basketball?"
"No."
"Oh, then I guess he mixed up his patients, so that test wasn't necessary- but it proves he doesn't have asthma... guess we won't continue on with part 2 of the test. Sit tight- we'll bring in his updose."

(I had not even stepped foot out of the building after the appointment beforeYitz was already on the phone to them  making sure we were not going to be billed G-d knows how much for these tests.)

And they brought in his dose doubling up from last week....
Updose in progress!
After he took the dose he said, "oooh- the taste is pretty good again, last week was disgusting!"

Upon getting back home with his new dose I compared it to his dose from last week...
This week's jar


Last week's jar


It seems that they forgot to add enough of the koolaid powder to help dilute the taste. Last week when Coby exclaimed, "ICK!" though, he was told, "we will be diluting the peanut protein less and less" so we thought that big ICK was normal---- but guess they in fact did NOT add enough koolaid powder after all.

The hour progressed fairly 'boringly'- yay! Blood oxygen, pulse and peak flow tested every 20 minutes with a follow up test when the hour was over..... AND HE DID IT! HE FREAKIN' PASSED THIS UPDOSE!

True, in many ways it is only 'day 1', though it took us 67 days- BUT---- this dose was as small as 1/50th of a peanut. (Max 1/60th of a peanut). Remember those doctor's original words, "It will take as little as 1/100th of a peanut to close his throat in seconds." This week's dose was FOR SURE less than THAT amount---- and he freaking DID IT!!!!!! His little body tolerated the dose. I CANNOT EVEN BELIEVE IT!
(I know, I know we are not completely 'out of the woods' and that every day can be different yadayadayada but IYH if his cold doesn't progress and we do the '2 hours of no exercise' after each dose his body can handle it.) 
Slowly but surely he is getting desensitized! 
That is a miracle in my book!

On the way home we called Yitz and Yitz asked Coby, 
"So Coby, how did it go? Did you rock it?"
"Yeah I did.... because I'm STRONG!"

You sure are my little man! You are my hero!!!! A true phenomenon!

I just updosed to 5 milligrams! (1/60th of a peanut!)


Oh---- and another quick update for those who asked... yes the doctor detected a heart murmur a few weeks back so we took Coby to the cardiologist on Dec. 30th (thank goodness b/c last possible day before high) deductible begins again.... and it's just an innocent murmur- pheeew!




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