TIMING IS EVERYTHING

So you know those times you feel like everything has fallen on your shoulders and flattened you, and you were just beginning to dig yourself out. Then boom- another avalanche hits.

Yep. 

We were just beginning to relax about this dose. Coby had four good days in of dosing at 250mg with NO reaction and we were beginning to look forward to this week's up-dose to 500mg.

And BAM!

I thought we had everything under control. Yes, Yitz is in tax-season so pretty much is absent, but I had it all under control. Shopping done. Kashered oven Saturday night. Finished kashering kitchen this morning. Had planned on baking 4 things today and the rest tomorrow before heading off to Brooklyn.

But BAM!

Yitz is working from home today but pointed out to me how cute Coby was lying down on the couch almost falling asleep.

WHAT? That is NOT Coby.

Coby asking for a blanket because it's a bit cold.

No, it is not.

Coby sounding just a little bit congested.

Me saying from across the room, "I bet Coby is getting sick, usually when his voice sounds like that he is sick."

Coby and Yitz insisting Coby is fine.

But the magic 6th sense of mom knows. She always knows.

And despite the seemingly symptom-less Coby I take his temperature.

And BAM!

101.6

Seriously?

Now?!

In the capsule stage?

With no way to half-dose?

And very limited amounts of capsules left in the house?

And the day before Pesach?

With no kosher lipesach meds in the house?

And about to go to Brooklyn?

Now?!

Coby still insisting he feels fine.

Coby singing at the top of his lungs as he plays.

But 101.6.

Not a high fever.

But.

A bam nonetheless.

One cannot full-dose with fever because fever together with allergen can bring out anaphylaxis.

One can also not dose within a certain time-frame of taking Motrin because Motrin plus allergen can bring out hives and a reaction.

Are you flippin' kidding me?

Now?!

The day before Pesach begins?!

We FINALLY got a good streak going of dosing at 250mg and were going to updose to 500mg this Thursday.

Now?!

So with just one hour before having to dose we paged our doctor.

He called us back and we asked him what to do. I expected him to tell us to check if the motrin Coby had taken an hour and a half earlier had brought down his temperature to under 100 and allowing us to full-dose just as he had in Florida.

"Do not dose Coby at all today."

What?!

Not at all?!

Not even a partial dose?!

BAM

4 days into OIT Coby had strep so they down-dosed him to half the dose, and at that point Coby had temperature of over 104!

In Florida , 2.5 months into OIT Coby had fever, so they down-dosed to half the dose.

But now- NOTHING?! 

The doctor said until Coby is seen by the pediatrician and has a possible 'diagnosis', he doesn't want to risk dosing him with fever. He said we should call him back after Coby is seen by his doctor and we willl decide how to proceed. He said skipping just one day is completely fine. (Is it?) And if he is fever free he can even go back to his full dose of 250mg- tomorrow.

But what is the likelihood of having fever for such a short amount of time?

And if he has fever again tomorrow then what?

He is not yet on peanuts so we can't simply do half the dose of a nut.

He is no longer on liquid which was so easy to half dose.

He is on 250mg of crushed flour. He does have a bunch of the last dose of 175 left--- but that's not a half dose. He has a handful of the 100s left- but that is less than half a dose.

Isn't something better than nothing?

Maybe Coby is at such a high level now and coming out of the big reaction he had it's just too dangerous to dose at all without knowing what's going on in his body?

BAM

And so I spiral.... How will we do this? Will the doctor continue to have him completely NOT dose as long as he has fever? And then what? Will we have to slowly climb back up? Will that be safe to do at home?Will his next up-dose appointment at the doctor's be where Coby was at weeks ago????How much progress are we going to lose?What about updosing this week to 500?! Come. On!!!! Is that now circling down the drain?

COME. ON!

Seriously?!

BAM. BAM. BAM.

And so for the first time in 5 and a half months Coby ate NO peanuts.

Zero. Zilch.

And I have no idea what the repercussions will be.

And we continue running up the down escalator that at times seems to be going at super-sonic speed.

And. I'm. Running. Out. Of. Stamina.

And until tomorrow's doctor appointment (that has yet to be scheduled since they were closed by the time we realized he had fever) we are left in limbo.

BAM!

And since of course everything has to happen in the suckiest of times, despite it being tax season, Yitz ran out to buy both children's tylenol and children's motrin that can be used on Pesach. Motrin to be given for higher temperatures but not too close to our dosing time, and tylenol to piggy back if necessary to get his fevers down in order to be able to dose him with something. 

Praying not to lose the progress we have made...

But fevers and dosing can lead to anaphylaxis. We are going to Brooklyn for the first two days and while we hope to avoid hospital visits, when necessary we much prefer the hospitals in Bergen County to the ones over there. 

Obviously we hope to avoid the hospital. But we also hope to dose. We need to dose. Why must the stressors keep piling up one on top of each other?

Every once in a while as we continue to run up that loooooong down escalator, someone pushes a switch that shifts that escalator into a slippery slide and down we fall.

BAM!

So since Coby did not dose today. He said, "it feels soooo weird that I'm not dosing!"

Actually for the very first time just a couple of days ago Coby was whining about all his dosings during OIT. "This is so annoying, everytime I dose I lose a half hour!" See, Coby didn't mind the two hour rest period, what bothered him was that even if he is in the middle of a computer game, at a certain point we have to stop him to eat his carbs, wait ten more minutes, then dose, then drink, then applesauce. In reality all that takes about 15 minutes but in his mind it was 30. And for the very first time since beginning in October Coby complained about it being annoying. Oysh.

Anyway since we did not dose Cobes today, I ended up gaining about two hours in which I didn't have to observe him after dosing, so I figured I'd better get everything done TODAY because who knows what tomorrow will bring with Coby's doctor appointment, paging the allergist, figuring out dosing, hoping for no reaction after having completely skipped today and getting over to Brooklyn during rush hour traffic on erev Pesach.

And so I packed today instead of tomorrow.

And other than the kremslach which I need to make tomorrow, (because on Erev Pesach, Kremslach is like the law!), everything else I baked today:

1. Sponge cake

2. Heavenly crumb coffee cake

3. meringue cookies

4. custard biscuits

5. brownies

6. brownies with chocolate chips (for Josh to take back to the dorm)

7. chocolate vinegar cake

8. pop overs

9. hard boiled eggs

10. apple kugel number one

11. apple kugel number two.

which leaves tomorrow almost completely open to figure out what the hell is going on with dosing while keeping Coby safe and keeping him from losing too much progress.

Sigh.

Why now?

Why, why, why?

Capsule stage was only supposed to be 4 weeks. That's it. Why couldn't it be not complicated for just 4 weeks? 4 weeks of dealing with James. 4 weeks of trying to get those capsules open without shattering. 4 weeks of Coby downing 'FLOUR'. Eating flour is HARD to do. You try it. Liquid is doable. Solids are doable. But powder. YUCK!!! 4 weeks of hoping we have enough capsules to get us to the next step since it is so difficult to get the peanut flour and then get it to the apothecary (who is only there once a week and then takes several days to get it done.)

4 weeks. That is it.

So why?

TWICE within the 250 'week'?!

Why?

Couldn't it have been simple just for the capsule stage?! It is so hard to handle all these bumps during the capsule stage.

But alas (and here I am using THAT word twice within a week), why should it be simple?

We have a reputation of 'stuff' happening at the more inconvenient times which include, but are not limited to:

-Josh getting 104 fever the day before we are supposed to leave to Disney on the auto train.

-Mikey getting stitches on a Friday afternoon, one of those short ones in the winter, and we barely getting out of the hospital in time to make it home for shabbos. 

-Josh breaking his finger the day before leaving to camp requiring hospital visit b/c no doctors had any last minute availability and he needed to leave to sleep-away camp the next morning.

-Mikey getting 105 while in Canada when we were there for Yitz' grandmother's funeral. Having to find a babysitter (despite me and my trust issues of leaving my kids with babysitters especially someone I don't even know) who will stay behind with a sick kid, get to the funeral on a Friday, find a doctor who will see us despite us not having insurance (they saw us for 75.00 cash). Doing a slow culture which takes 3 days. Yitz and I carrying 6 year old Mikey around the block from where we were sleeping to where we were eating for shabbos because he had no energy to walk. And us needing to start driving back home early Sunday but being held back for hours as we waited for a callback from the Canadian doctor to see if he had strep and to get him started on the medicine before the 8 hour drive.

-Josh slamming his head into the ceiling the day before leaving to camp requiring an emergency room visit to determine if he had a concussion.

-Coby getting sick while vacationing at Disney requiring a trip to centra-care at age 3. (yep him getting sick this year at Disney was not a 1st for him.)

-Coby getting sick with pneumonia while vacationing in Canada. Since we didn't have Canadian insurance we needed to drive back over the border to a hospital in NY. 

-Josh getting sick with swine flu, the day I accidentally set my oven on fire which filled the house with so much smoke that we needed the fire department to come fan out the house as we all waited for a few hours in the backyard for the smoke to clear out. On erev Shavuot. We did not yet know at the time that it was swine flu, but a few days later when Yitz ended up in the emergency room, the hospital diagnosed Josh with swine flu... and a few days later baby Coby was also diagnosed with swine flu as well. Husband in hospital. Two kids with swine flu. Erev Shavuot. Kitchen fire. No biggie.

So we really should be used to this by now. I mean, we even laugh about all the above times too. 

BUT.

This feels different.

This isn't just a single episode at an inopportune time.

This is a continuous uphill battle. Every Single Day.

This is not a simple something a dose of antibiotics can cure.

This is so much more than that.

So much is riding on this. 

Coby had been eating some fraction of peanut every single day for the last 160 days.

And then today? Nothing.

Zippo. Zilch. Nada.

BAM

And I am losing my mind about this. 

Because I need a road-map with clear-cut directions printed out. Yes, I know what our destination is but I am so sick of getting 'road closed' signs and 'detours' and 'construction ahead' and 'dead end's. There is just so much that this type A personality/touch of OCD (self diagnosed) gal can take. And why not throw erev Pesach into the mix while you're at it? "Keep those curve balls coming," she says sarcastically.

Well, we all know that there is an upside to nearly everything and even I can see one as well--  since I had been crazy busy non stop all day I didn't have time to eat breakfast. Or lunch. So at least I'll be heading into this heavy caloric holiday a few ounces lighter than I otherwise would have been--- so yeah, there's that.

Hoping for a miraculous 12 hour fever cured by the morning so we can full dose tomorrow. Stranger things have happened, right....