Another missed up-dose day.
Sigh.
Going into Pesach Coby had to completely skip his doses for TWO FULL DAYS due to his being sick. (That is quite ironic actually, as I was wondering how the heck I would 'carb up' Coby on Erev Pesach without bread or matzah being allowed. Turned out we didn't have to carb him up at all.)
I was quite scared as to what will happen to him when we finally were able to re-introduce peanut to his body. True we were going to start at a dose he was at two weeks ago--- but that dose was still equivalent to about 1/4th of a peanut. Back on day one, he had begun reacting to 1/6,000 of a peanut- what will happen when 1/4th of a peanut was to re-enter his body after nearly a three day hiatus?
We were heading out to Brooklyn for yom-tov and I chose to pack a spare set of epi-pens because I truly was afraid that we'd have to use a set when re-introducing his allergen.
Our doctor had told us that even if Coby still had some fever by day three, we'd HAVE TO introduce some amount of peanut into his body because it was way too risky to skip three days in a row and then try reintroducing it. Thankfully by day three he was fever free, at least that was no longer an issue!
And since he was completely off dosing we had no schedule to adhere to. (Usually he doses shortly after getting home from school at 4:10PM- and we are supposed to stick as closely to 24 hours as possible without going more than 22-26 hours in between.) I had read that dosing in the morning is actually easier on the body since the body's cortisol levels are at its lowest and the risk of reaction is lower too. So I figured when reintroducing it, we'd dose in the morning to maximize his chances of success and over the course of the next few days, slowly move his dosing time back to his regular time of 4:10.
So at around 10:30 Tuesday morning we carbed up and dosed Coby at the 100mg level.
And waited.
And NOTHING!!!!!
His body COMPLETELY accepted 100mg- 1/4 of a peanut despite it being nearly three days since it had been in his body.
I was amazed!
This is truly a miracle in my eye.
The next day at 11:30AM we went up a level and gave him 175mg.
And waited.
And NOTHING!!!!!
Amazing!!!
And today 'would have/should have' been his updose to 500mg. Actualy today 'would have/should have' been peanut day had the last two weeks run smoothly, but 'alas' (there I go again, with that word), it was not meant to be. The last two weeks were NOT boring, unfortunately.
This is Coby's dosing diary. What we want to see are 'zeroes' with a line through them which would mean no reaction or side effects. As you can see the first six days of 250, he had something going on--- then he had FOUR DAYS of no reaction at all--- but then he got sick. :(
Sigh.
Most kids are able to get through the entire OIT in 4-6 months. Next Thursday we hit that 6 month mark and we are nowhere near done.
That finish line seems to keep getting further and further. In fact when we cancelled today's appointment, we had to have them add several appointments through the month of July.
Sigh.
There are 12 up-dose appointments left. If we are able to up-dose every single week (with the exception of Shavuot) it takes us through most of July.
So we are not going to be done before the summer as we had hoped.
At times it really feels like we are walking against the wind.
But as someone recently pointed out, we may be having a bit of a bumpy ride right now, but Coby is still light years away from where he started.
We may be down, but we are not out.
And so we keep going.
And we look at the small ways our lives have already changed.
In fact, we even let (tree) nut cake into the house. There are also cashews in the house! Coby did not test positive to those and so this year we allowed them into our home. (On Pesach, they most likely did not come into contact with peanut.) Technically, Coby can actually eat them, though it is a still a bit too hard to make it readily available to him, so we put it slightly aside. If he sees it and asks for it (he won't), I would allow him to have it (and then watch). Everyone in the OIT group keeps pointing out that even after desensitization it takes A LOT to change our mind-frame after all these years of living in fear. It's still going to be hard and take a while to completely trust. But even being able to have things in the house that we didn't before- is huge. We were even able to have 'lady fingers' (may contain tree nuts) in the house this Pesach. Crazy!!!!
Meanwhile here we are on Chol Hamoed Pesach. And we're not doing anything. Instead, I am stalking facebook living vicariously through everyone else's Chol hamoed outings (keep those pictures coming!) Coby and I are got stuck at home. Josh is back at college. Yitz is at work tax seasoning. Mikey is at Great Adventure with NCSY. I had hoped to bring Coby to a movie matinee- but the timing did not work out for the time he'd need to dose today.
Oh well.
It is gorgeous outside and almost a crime to stay inside, BUT I am very nervous of (environmental) allergy season. People in my OIT group say this is the season that 'overfills the allergy bucket'. Dosing together with dealing withe environmental allergies are often too much for kids. Even though many of the kids are on an allergy medicine, or two, (as Coby is), they are having some reactions to dosing.
I am not even opening the windows to our home in fear of letting all that pollen in.
We need to maximize our chances of pulling forward.
(Don't ask me yet how I'm going to deal with allergy season in years to come, trying to get through this first one!)
So we stayed home in hopes of keeping his system calm and to get him back to his original 250mg level (that had given him problems for nearly a week when we first introduced it.).
Coby is just not enjoying Pesach apple-sauce so I made him kosher lipesach Chocolate pudding to dose with. We are prepare the dose on a kitchen chair instead of a counter or a table since it is kitniot. Coby has the heter to eat it, but the rest of us are obviously not eating it and I didn't want to risk it getting into any of our foods.
 |
| About to reintroduce the 250mg dose! |
Coby began chanting out outloud, "Okay Coby, Okay Coby- it's all up to you!" and made muscles before downing the spoonful.
He ate it. And absolutely HATED the pudding. Oysh. Is Pesach over yet?
He then drank his cup of water and he still needed to eat applesauce to keep his tummy calm.
But Pesach apple-sauce- oyyyyy.
He was grimacing. He was groaning.
We had just started watching one of Coby's favorite shows: 'little big shots', and twin boys were about to wrestle.
Since Coby was taking his sweet time eating that applesauce and I needed to get it into him and fast. I said, "I will feed you if you eat it nicely." He agreed.
I paused the show and Steve Harvey was frozen in the background.
I became the MC. "Steve Harvey.... you think two four year olds wrestling is something? They aint got nothing on this 8 year old who is wrestling his allergen and about to down it in less than two minutes!"
Coby started laughing, opened his mouth and downed that cup of applesauce.
"AND THE CROWD GOES WILD!!!!"
And together we watched the rest of the show, with me watching Coby out of the corner of my eye.
He did mostly okay. He seemed to get a bit tired and lay down on the couch. For a moment it looked like he was going to fall asleep (which is not a good thing). But he did not.
45 minutes into the hour he started rubbing at his eye.
A lot.
But that stopped after a few minutes. And nothing else happened.
Pheeeeew!
So we are back baby!!!!!
IYH tomorrow even less than eye rubbing will happen.
And shabbos should have us back at his regular dosing time.
And maybe, just maybe--- next Thursday we can finally make it out to our updose appointment?
WE MAY BE DOWN BUT WE ARE NOT OUT!
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