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Friday, February 28, 2020

Trip #7, updose #6 - Almost half a peanut!!

Trip #7 to  CHOP

I thought it would be fun for this blog to interview Ella about the whole experience.  Once I started asking her questions though, I realized that wasn't going to happen ;)  lol  She was in no mood and she's done with the whole thing.  Had everything gone as planned she'd be in "maintenance" by now, but instead, she has two more updoses to go. That being said, because we were stuck so long at the last dose, only TWO more updoses sounds awesome :)  So, maybe the interview can come at the end when she's feeling more up to it.  For this blog, we decided to walk you through a day at CHOP...

Almost all of our appointments are around 10 in the morning so we catch the 7:30-8:30 train.  
The train is soooo much easier than flying or driving. It's a little disconcerting that there are absolutely no security measures, but we can arrive just 15 minutes before our train and wait at the door until we see that it's arriving.  So simple.  On the train sometimes we play games, sometimes we just chill on our phones and sometimes she has homework that needs to get done.
this is waiting for the train...she normally has some math to do so she either does it on the train or waiting after her dose
The train station in Lancaster only has a little store where we sometimes grab her a muffin since she needs to eat on the train.  But the station in Philly is huge and has tons of food options.  This week, we had enough time once we arrived to grab some breakfast.  As you can tell, she is less than excited to be there :) lol  Taking the train and doing OIT was at first an adventure...but 5 months later she is ready to be done and stop missing so much school.  
Tired, grouchy and fighting a headache :( 
From the train station, if the weather is nice (which it hasn't been since november), we walk.  If it's too cold, we take an Uber.  It's a mile and we always have our bookbags, so we normally take the Uber.  But the few times we were able to walk were nice :) Although a little complicated at first (trying to figure out where to meet the driver at the station), we've become pros and can now do it with our eyes closed ;)
chillin' in the uber and sporting her headache "preventer" on her hand
When we arrive we check into the Buerger building downstairs and then again to the allergy department upstairs on the 6th floor.  The initial wait is never long - then we get called back to our room.  The rooms at CHOP are nice and have really nice paintings/pictures on the wall.  Ella likes taking pics with them :) 

  After they check her vitals and get a baseline for everything, they give her the new dose.  We bring the stuff to mix with it (currently still OJ).  She's figured out that if she plugs her nose (see pic lol) she doesn't smell the peanut :)  

After the dose, she walks the halls for a few minutes.  She can't raise her body temp or heartbeat so she has to gauge how much she walks.  So, she usually walks a lap, we play a game while she has a little snack and then she walks a few more.  She's so creative that she makes it fun :)   see the pink on the floor?  She can only step on those ;) lol

If she doesn't have a reaction, we leave after an hour.  If she has any kind of reaction, we stay an extra 30-45 minutes.  The wonderful nurses and doctors are so great - checking in on us every 5 minutes or so.  When we finish, they send us on our way with our new dose, new spoons and new peanut flour.  This week was updose number six - almost a half a peanut!  Isn't that unbelievable?! She can actually eat a half a peanut and be okay!! I still can't believe it.

finally got some big smiles from her at the end :) 

Thank you for following our journey.  If you know someone with a life threatening allergy, please share OIT with them and let them know it's a choice.  It could save their child's life.  <3 

If you are just jumping in with our journey, check out the previous posts:

updose 2 (first real updose after getting the first small dose)

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