THIS IS THE MOMENT

So this morning we spoke to the doctor and they decided that Coby will NOT be up-dosing to two peanuts this week. They decided that due to the severity of Coby's allergy it is too risky to do an increase of 100% at this point. Instead he will be up-dosing to one and a half peanuts. An increase of 50%.

Why?
Last week at the appointment, we were discussing this week's up-dose to TWO peanuts, but an hour later she called to say that while regular protocol has this week's increase to two peanuts, for Coby it may not be.
What changed in that hour to make her go from talking about our updose to two to an 'it may only be one and a half.'?
Did they decide his post up-dose check up was not as wonderful as they wanted it to be?
Was it because they realized we are approaching the same amount that caused his biggest reaction---- his "incident" and it's getting riskier?
What changed their minds?

Today they called to say the head doctor agreed that it's in Coby's best interest to slow down this week and only go up by 50%.

My initial feeling upon hearing this is disappointment. Ugh, another week added to his treatment. This now means that if there are ZERO more hiccups/changes/sicknesses/reactions in the rest of his journey his graduation date will be July 20th, nine days short of his birthday.
If more than one more thing happens he will miss graduating in time for his birthday, and will probably not be able to have his long awaited for ice-cream cake on his special day. :(

(While the 24 peanut food challenge will not happen for another month after that which would mean real freedom, I believe he will be given most freedom on that initial graduation day.)

When we started this journey he said, "I want to do this so I can have an ice-cream cake on my birthday!"

Our initial goal was for this to be done in time for his birthday, in time for that birthday ice-cream cake but that seems to be slipping away. Everything has to run pretty much SMOOTHLY for the rest of this journey in order to make it.

What's the chances of that happening?

I need to stop and remind myself that I shouldn't be upset about another week being added because what really matters is being successful in this treatment. And so far, so good! We are still in it. We are more than half done! And Every single day he is able to successfully dose is a victory in and of itself.

But his birthday.....
 I am someone who is very into exact 'dates', both the bad and the good, and am very into celebrating (or mourning) things on the specific days they happened. I feel the moments of life strongly on the anniversaries of the dates they happened. If someone wishes me a happy birthday at 11:57PM (three minutes early), it pisses me off. "It's NOT my birthday!" I want him to get that ice-cream cake ON his actual birthday. Yes, I know he can have ice cream cake at a later date.... but we want it for the day he entered this world.

 I feel like a toddler having a little tantrum kicking and pounding at the floor. I WANT WHAT I WANT WHEN I WANT IT AND I WANT IT NOW!!!!!

Though honestly, who even knows if an up-dose can happen at all this week? My Coby is sneezing a bit. Is it (environmental) allergies? Just a cold? Is he getting sick? If he isn't getting 'real' sick as in fever, but continues to be sneezy, that would mean another trek up to Suffern to determine if they will allow him to up-dose at all.

...on the other hand even though we are only up-dosing by 50% I've got eagles in my belly instead of mere butterflies....

Why?

Because, THIS IS IT. THIS IS THE MOMENT.

THIS IS THE POINT WHEN HE IS GOING TO HOPEFULLY SURPASS THE AMOUNT THAT GAVE HIM HIS BIGGEST REACTION YEARS AGO.

Last time he ate this amount.....

And now?

(She actually said instead of eating one and a half peanuts we can bring in the equivalent in reeses pieces---- EIGHT! He probably will be doing that. And next time when he does go up to two full peanuts, we can bring the equivalent in peanut M &Ms- which would be 3 Peanut M&Ms.)

So I know to trust the doctor. That one and a half is the way to go. They got us this far and again, this is the right decision. Safety is paramount. After all even by 'only' going to one and a half--- it still gets us to his 'moment'.
THIS IS IT. THIS IS THE MOMENT. THIS IS THE WEEK HE IS GOING TO SURPASS WHAT NEARLY TOOK HIM LAST TIME--- so why push it? Let's slow it down and do it safely.

But..... I'm soooooo scared. This is going to be another one of those week's where it will be hard to slap that smile on, buckle up our seatbelts, drive up to Suffern, willingly walk in that door, encourage him to open his mouth and start chugging down those reeses pieces.

So yes while I am disappointed that we're 'only' going up to one and a half, I'm also terrified. I witnessed what happened last time to this amount. You don't forget those moments. Those moments are forever etched in my brain. The goobers were on the desk. Right here where I sit typing. He came up to me and asked for one. I gave it to him. He said, "more", I gave him one more. And it was all downhill from there..... and now I'm going to sit back and feed him the equivalent? And do it again?

Isn't the definition of insanity, doing the same thing again but expecting a different result? (I know, I know it's not exactly the same, because we've been preparing and training for the last several months to get this different result, but....) Who does that?

I read someone's post in the OIT board whose child graduated three years ago. She said at the time everybody questioned what she was doing to her child. Somebody even reported her to child protective services!!!! (It was of course dismissed)
At first I gasped upon reading that. CPS?!!!!
But then I understood.
Hell, sometimes I want to report MYSELF to CPS. I feel like I am forcing him to walk barefoot on burning coals in order to get to the promised land.

Actually the road he is walking on is WORSE than simple burning coals.

Sigh.

I feel like there are two moms on my shoulder--- one pulling me by the neck and shlepping along this OIT journey and the other one pulling me back and shouting WHAT THE HELL ARE YOU DOING?

There is a real battle going on inside me and at certain points in our journey that battle gets very loud. This is one of those points.

So here I am, questioning if they will allow him to up-dose at all since he's got the sneezies and praying he is okay enough to up-dose.
And here I am frustrated that another week is added on to our journey.
And here I am hopeful and seeing the light at the end of the tunnel.
And here I am terrified of feeding him MORE THAN....

IYH he will be okay enough to up-dose.
IYH he gets past his "moment" safely.
But it is so scary.
I cannot imagine that I'll be getting much sleep on Thursday, post dose. Even though by the time I go to bed, seven hours have passed since dosing, I just can't chill the hell out. Not since his possible anaphylactic reaction he had a few weeks ago. I say 'possible' since while the doctor agrees that technically it was anaphylaxis, it wasn't nearly as bad/dramatic as his initial incident/moment so it's kind of hard for me to wrap my mind around it and call it 'anaphylaxis'.
Each time I try to chill out and lie down and relax and sleep, my heart starts pounding and I shoot up in bed thinking WHAT IF.
And so I go to check on him, (yes I literally make sure he is still breathing) and am relieved he is okay and I exhale and then go lie back down.
A few minutes later I shoot back up because--- WHAT IF.
And so the cycle continues.

I even sleep with a baby monitor next to me, but it's not enough of a reassurance for me to relax. I don't trust in it. I keep shooting up in bed because I'm positive the monitor will have stopped working. And if it were to stop working then I wouldn't hear him if he were in trouble. And so I need to sit up to make sure the red lights on that monitor are still on. (One time the lights were actually off and I had to jiggle the wire to get it working again, so there was my validation that I shouldn't relax and sleep.)

FEAR. RELIEF. FEAR. RELIEF.

This brings me back. Fear followed by relief quickly followed by fear again.

It's nothing new.

When I finally got pregnant with Coby, (following the years of my treatments and the losses we had to endure beforehand) I was terrified. I could not relax. I wanted to enjoy the pregnancy, but I could not. I was terrified.
Even at the very start the doctors warned me to prepare myself to lose him too since the numbers just weren't adding up. The HCG levels were not increasing the way they should. After a few weeks, they stopped doing the blood work and just relied on the sonograms since the blood numbers just made no sense in comparison to the baby they saw on the monitor. THAT baby looked okay, though my blood numbers indicated otherwise. So they told me to just trust the sonograms. But I couldn't relax. Not after all that happened in order to even get to that point to begin with.
When the RE graduated me to a regular ob/gyn I didn't want to leave.
BECAUSE WHAT IF?

Each time I went to my regular ob/gyn I was terrified there'd be no heart-beat. It happened too many times already. With the others.
With Coby--- each time I heard the heart beat, it was a HUGE relief. A weight off my shoulders.

But by the time I was in the car driving back home I was positive something happened to the baby in the time since they checked his heart-beat twenty minutes earlier....

and I lived in fear until the next appointment. Then relief. For about 20 minutes. Then fear again.

Once the baby started moving- ahhhhh, relief.

But when he decided to rest and so he stopped moving? FEAR! There were many times I was literally yelling at the top of my lungs BABY MOVE. WHERE ARE YOU? BABY MOVE!!!!

When he did, I felt relief apologized for possibly waking him. And then a few minutes later. Fear again.

Then the baby is born. RELIEF!

But then they called in specialists because the back of his head was way jutting out and way too big. Was there possible fluid in his brain?

                                                  Doctors had said the back of his head was protruding too much away 
                                                 from his neck and out of proportion to his body, and were concerned it
                                              could be due to fluid build up in the brain (which is very bad), thankfully
                                      it was just a big head! (nothing to do with 'cone head- as he was born via c-section)
FEAR

Four days later we needed to take our newborn to the hospital for sonograms of his head to check his brain. When they told us he was 'all clear' and just had a really big back of head.

RELIEF

But those night-times....
Each time he went to sleep for a few minutes.

FEAR

Unable to sleep through the night because... WHAT IF

Staying awake to keep putting your hand on the baby's back to make sure it was rising.

RELIEF.

Til FEAR.

Til RELIEF.

Ever since doctors (and others) told me to give up. Don't try for that baby. It's not going to work. I didn't listen to anyone other than my heart and I got my Coby.
But--- I have since then been waiting for that other shoe to fall.

So many hospital trips when he was little. Pneumonias. Fevers of over 105s. Two (minor) surgeries by the time he was 18 months old. FEAR. RELIEF. FEAR. RELIEF.

And I try.

I try to calm down.

But then something happens. So I can't.

Because what if I calm down, and something happens and I miss it?

I mean he is at his "MOMENT".

THIS IS IT.

In less than two days time we are going to try again.
Take two.
And hope for a different result.