NO JUMPING IF A CELL PHONE FALLS ON YOUR FOOT!!!!

Well this morning started off (emotionally) a bit rough but the end of the day on a better note than yesterday!

We made it through night numero uno. And I was still wound so tight. Coby had been complaining a bit about a stomach ache (which is unlike him) last night so I was afraid to let my guard down. We gave him his 1st round of nose drops before bedtime. After he went to sleep I kept the baby monitor with me so I can listen in on him. When I tried to go to sleep all I could do was watch the baby monitor (and no, it does not have a tv screen just red lights) soooo scared something would happen and I wouldn't hear him.

So I brought him into bed with me. Back to the newborn stage! ;) He used to sleep in a bassinet  next to my bed where I could reach over and put my hand on him and make sure he was still breathing. Same thing last night! Well he no longer fits into that bassinet, but again through the night I kept putting my hand on his stomach as he slept next to me to make sure he was okay.

When he woke up in the morning he said his stomach was fine but his throat was hurting. Well that could be a number of things---- side effects (though it has been 17 hours since his dose!), dry mouth, or environmental allergies. After drinking he said it was a bit better.

And so back into the world he went. Yitz brought him to school and I spent the morning worrying about him being away from me and hoping for a nice uneventful day in school. His school put up a video of all the kids davening hallel together- which was so nice, but I was eagle eyed on Coby who kept wiping at his nose. Environmental allergies? Residual effects still from yesterday? Oh my gosh I felt so nervous and at times don't know how I can chill myself out, or if I even should. I need to be super vigilant, don't I?

When I saw him in a few of the pictures I tried to decipher it. "Why does he look sad? Is he not feeling good? What's going on his little body. Especially at the beginning of OIT his little body is working so hard to metabolize and digest those peanut particles. I know his body is at war with itself and it's heartbreaking. Is he in pain?

An innocent picture- a snapshot of a moment in time has me writing essays in my mind of what is going on behind it.

When I picked him up from school and the other kids from my carpool were out quickly and buckled in my car and we were still waiting on Coby I was imagining him unconscious in some bathroom. Yep, this is where my mind goes. Not a pretty sight!

When I saw him and he had a big smile on his face and was happily telling me about his day, FINALLY my muscles loosened and I exhaled...

...and it was also very sweet and unexpected that the doctor called US today to check in and make sure Coby was okay. He had told us to make sure we call him on Thursday to let him know how it's going so I didn't expect a call from them today to us. Makes us feel well cared for.

....for a few minutes because I knew once I got home the cycle would begin again. Zyrtec followed by carb loading followed by dosing followed by applesauce followed by hours of watching and waiting and reminders of 'DONT RUN", "DONT JUMP" "NO EXERCISING."

substitute the dad with a mom carefully watching her child.... and fine, I didn't go as far as duct tape either. Yay me!

Last night people on my OIT message board were so excited that trick or treating was now safe for their children who graduated! Someone else in the midst of OIT posted a reminder, 'do not forget about those hours of vigilance and NO exercising after dosing--- I dosed my child figured walking around in 50 degree weather to trick or treat was okay- kid ended up in the ER from a reaction due to the 'mix' of the walking with his dose.' Simple walking did him in!

Even if a day goes by okay- or a week goes by okay, it doesn't mean that the next week or the next day won't be bad. Some children handled a dose fine at the doctor's office and for a couple of days at home and then on the 3rd day- reaction. Another person on the facebook group said their child had no previous reactions but when he doubled his dose (way ahead from where Coby is now) poof anaphylaxis. As you continue on the updosing comes at larger and larger quantities as the body begins to get used to the 'invader'. For example one week someone is on 1/100th of a peanut, and the following week it's 1/50th. That seems so far away for us- but in reality if Coby does well enough- that could be just 3 months down the road. I know it seems pathetic- 1% or 2% of a tiny peanut---- but we are all the way back at 1/6000 and reacting- cannot imagine getting to 1/50th!

I was a bit nervous (shocker) as I filled up the syringe to the 2ml mark worrying, 'what if i do this wrong and i overdose him? what if i dont do it perfect, what if i do it a bit too little and i underdose him to be ready to continue this....' Again, my brain is such a pretty place...

Ready to dose! Log I have to keep regarding dose, time and reaction. Blue cooler goes back and forth for new doses (must be refrigerated). Zyrtec and nose drops. Cup of water he needs to drink as soon as he's done with his dosage, followed by a bown of applesauce. And jar of microscopic peanut proteins dissolved in grape koolaid)

First time dosing at home!

Good news is Coby loooooves that grape koolaid and as soon as he finished he said, "Can I have more?!" UH, NO WAY BUD!!!

Gotta laugh though--- shortly after taking it and being reminded, 'don't run up and down the steps- just walk. Don't rush. Take your time!' Coby proceeded to drop a cell phone on his toes. (obviously ouch- not funny!) but since it hurt automatically he started jumping up and down exclaiming OW OW OW OW!!! And I yelled, "NOOOOOO! STOP THE JUMPING!!!!!! JUMPING EQUALS EXERCISING! NOOOOOO!" which cracked him up enough to forget his tough and stop the jumping. But in all reality he cannot be jumping afterwards.... and his toes are fine! :)

And the first hour otherwise passed mostly uneventfully. A tiny bit of itching and one single cough and we are now over two hours post dosing!!!!! Truth be told for several hours we will keep an extra eye/ear on him because there are always those rarer stories of reactions happening even 10 hours later... and a 'normal' side effect may be stomach pains because he's got a little, or should I say big battle going on in his little belly as his body is trying to accept this dose without going into overdrive.

Coby and I did a little song and cheer and visualization of those teeny tiny peanuts that are currently in his body but how his body is strong and he will fight them! It may take a while, but we will win this thing. He agreed those peanuts stole too many years of his childhood from him (over five years now) and he is ready to take his life back!!!! YEAH!!!!

So this day is ending off better than yesterday's and better than this morning's. Perhaps I can even trust the baby monitor tonight and let him sleep in his own bed... I guess we shall see. Inhaling and exhaling a bit easier than earlier in the day. I got this!!! Well sorta. Maybe? I don't know talk to me tomorrow when we do this all over again. And again. And again. And again.

****A couple of hours after finishing this entry and 4 hours after dosing Coby out of the blue exclaims, "MY HAIR IS COLD!" He didn't touch his hair (it does not feel cold) he just said "I can tell my hair feels cold. Brrrrr!' Weird weird comment. But one he never made before so once again the stress begins to build.