I think the combination of witnessing the child next to us go into anaphylaxis at our last up-dose, together with the upcoming switch to capsules must be weighing on my subconscious (or maybe not so 'sub'). Coby has just two more up-doses until they switch him to peanut flour filled capsules. While a reaction is possible at any appointment, for some reason, kids have a harder time when they switch 'forms' of peanut. In fact in just under two weeks (if all goes well) Coby's final liquid updose will be to 50mg, and the following week his first peanut flour dose will be.... 50mg! Yep, they don't up-dose the child, they same-dose the child because switching forms is hard on the body. Kids tend to react even at the same dose of a different form. Scary stuff.
It will be soooo weird when we switch to capsule form. (Peanut flour is compounded and put into capsules at an apothecary. At each dose I am supposed to open the capsule and drop the flour onto a spoonful of applesauce or pudding for Coby to eat.) Now when Coby has his purple liquid dose pulled up into that syringe it doesn't look anything like peanuts. ...but peanut flour looks like ground up peanut. Won't be able to fool ourselves anymore. (Hmmmm perhaps I can pretend it's light brown sugar...)
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| Peanut capsules |
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| Peanut flour from within the capsules in pudding |
Anyway the dream... I dreamed we were at some family simcha in a fancy ultra religious hotel where people wore long dresses and sheitels. There were shuls inside this fancy schmancy hotel. I took Coby aside to give him his very first capsule dose, but Coby grabbed it from me, pulled the two halves apart quite vigorously and the powder went flying and multiplying itself and landed all over Coby's face- in his eyes, up his nose, on his lips and in his ears and he immediately started reacting. I grabbed him and started running through the halls screaming. For a second I was embarrassed that I was running through the place of the ultra-orthodox dressed in my sweatpants pajamas but oh well.... I injected him with an epi-pen as he screamed as I held him down. I picked him back up and continued running. I passed by an open door to a shul and saw my mother in law sitting in the front row. She was wearing a yellow jacket and black skirt. I tried to quietly wave to her to come help, but she thought I was just waving and she smiled and waved back. I was clutching Coby to my shoulder (he seemed to be the size he was when he had his big reaction at age two and a half) and saw the spots spreading and his breathing become more labored. I heard rattling from within him. I was wondering if I needed to inject him with his second epipen saying, "I cannot believe this is actually happening." In my dream I even updated my facebook status, "There is nothing like holding your child as he is struggling to breathe. Please. Hug your child a little tighter today." And I woke up.
The details of that dream stayed with me throughout shabbos. The details did not get hazy as dream details usually do.
Sigh.
But it was only a dream. (I hope!)
As exciting as it is as we inch further and further in this journey (122 days, but who's counting) it is also a terrifying one.
Once we get past the hump of switching forms, it will be so much 'easier' when we graduate from liquid to capsules because we will no longer have to worry about refrigeration, or running out of liquid dose, or the fear of us breaking that glass bottle, so that will be nice change after all these months.
IYH March 9th will be his first capsule dose (after two more liquid up-doses). After four weeks (if all is well) of capsule doses it will be actual peanuts which would be before Pesach! Stores are already stocking Pesach supplies (sorry for the reminder)- but while the rest of the world is dreading and counting down to Pesach, we will be counting down to peanut. Crazy! Thanks to all of you who have offered us your good wishes and support. It helps carry us through the journey!
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