Ella's Birthday Blog 2020 - "The year of 'buts...'"

For her birthday today, she decided to re-pierce her ears and add a second hole! 
She didn't even flinch ;)

She's turning 12 today!  My little baby - now turning into a young lady :)  I started writing the kids birthday blogs when they were little (first one was way back in 2013), but it's been a few years since I've done it so I thought this was a good year to re-start. Because, well...

It's been a year. 

It's been such a year that I can't even pick an adjective to put in front of "year".😜 Maybe an emoji would work better.  lol I was trying to think of some way to characterize the year, something to talk about in her birthday blog...usually I have some sort of theme.  I was drawing a blank except for one word that kept coming to mind - "but..." So, here goes... 

Right before school started, we got word that Ella could start OIT (peanut therapy).  This was exciting yet nerve racking for both us.  Ella was nervous, she was hesitant about missing school, eating peanut flour, but...

She did it anyway.  She took the first step and went to that initial food challenge and got through it like a champ 💪

Also, right before school started, Ella found out that she and her best friend weren't going to be in any classes together this year.  In fact, Ella only knew one person in her classes.  It doesn't seem like a big deal...but to an 11 year old girl in a big school, it is.  It was.  But...

She did her thing, she stepped out of her comfort zone, and she made some knew friends...all while still keeping her old friend.  For an 11 year old...that's a pretty cool thing :)

In October, she sprained her ankle and had to wear a brace and use crutches for almost a month.  For someone who hates to stick out and draw attention to themselves, she was mortified to go to school the first day.  But...

Of course she did it.  And she did it with a smile on her face :)  She adjusted as she always does. Believe me, I don't take this for granted.

Close to Christmas time, we told both Paul and Ella that we would be moving to Peru for a year starting this summer.  Paul was excited.  Ella...wasn't.  To say the least.  There were quite a few tears.  But...

We've talked, we've shared what we're excited about, what we're nervous about.  We've talked about the possibilities while we're there, and the possibilities when we come back.  She has started learning Spanish on her own, she speaks positively of the trip (despite her trepidation) and she seems like she is genuinely looking forward to it now.

In February, we had continuous setbacks with OIT.  She had to repeat a dose multiple times.  She had a few scary reactions and numerous "belly ache" reactions.  She was tired of missing school.  She was tired of gagging on peanut flour every night.  She was tired of riding the train (it was fun at first).  Had everything gone as planned, she would have finished in late February.  Instead, she was looking at march or most likely april.  But...

she kept going.  She didn't give up and she didn't stop.  She soldiered on.

Then, well, we know what happened next.  Coronavirus.  The terrible, fun-sucking virus.  The stupid virus that changed the world as we know it.  March seemed ok in our household.  It was a change, but we managed.  By April, the two extroverts in the house were sick and tired of it.  Ella gets her energy from being around her friends and other people.  Being stuck at home wasn't good for her mental health.  She was missing her friends, sad, and all the awesome camps she was looking forward to this summer were canceled.  With no end in sight, the summer looked very dismal.  But...

she found ways to adapt.  She facetimed with friends to do school work.  We found little positives to lift our spirits (like ordering chick fil a to be ordered to the house or dying her hair) and we even found a way for her to make a little money while stuck at home.  I told her to put her creativity to use and make some things to sell on my teachers pay teachers site.  She's already made around $50 :)  You rock girlie!

She also decided to brave it and go alone to an alpaca camp - to break up the monotony of the summer.  It was awesome!!  and she had a great time :)

After 3 months of not being able to go to CHOP to finish her OIT, we finally got to go in June for her final updose.  In two days, we go in for her final dosing appointment where she will eat one peanut M&M.  She's nervous, but...

She's also excited.  An end to a long, exciting, yet disgusting journey, which marks the beginning of a new journey that will last her lifetime.  It is a process that will take years, but this part should be much easier :) Alleluia!

The one thing she asked for, for her 12th birthday, was an audition...a real audition for a real show...anywhere.  Of course, with things the way they are, this is on hold.  But...

We are using this time to create a profile for her, to write a resume, and create media for her to submit when the time is right.  She is also using this time to listen to Hamilton over and over and over and memorize every.  single.  line.  lol

Of course, now we will not be heading to peru in the summer.  She will be going to school here in the fall...and even though that was initially what she wanted, we had all made the necessary adjustments and were mentally ready to go.  Now we have to adjust again. But,

We know that when God is ready, we will go.  Ella would like to be in the school building this fall so she can see her friends, but we have already discussed ways she can adjust if that doesn't happen. She is nothing if not flexible...and almost always with a smile.

Next year, we'll have two teenagers.  I'm waiting for the attitude to start, the drama to kick in and the snarkiness to ensue ;) lol  But in the meantime...

I'll enjoy these wonderful days stuck at home with her and all the joy she brings to my life 💓 

Happy 12th girlie!!  I pray this next year is filled with more "and's" than "but's" ;) lol.  You are amazing and I can't wait to share this next year with you!! 

1/3 tsp = one peanut!

Today's OIT peanut blogpost is brought to you by:    

 


Lol.  That's right, you read correctly.  Today, we're sponsored ;)
It was our second time going to CHOP after it opened up about a month ago.  We wear masks and drive instead of taking the train.  Other than that, everything is the same. (I miss the train 😕)
Ella was particularly nervous today - (enough that she mentioned it various times throughout the last week) - because she made it to her final updose!  Why did that make her nervous?  Because it was 1/3 tsp of peanut flour, which equals (drum roll...) ONE peanut!  In case you didn't already know, that's a big deal :)
So, to help calm her nerves, I posted on FB the night before and asked for prayers that she remain calm and carry the "peace that passes understanding".  Feeling anxiety actually increases the chances of having a reaction - which we didn't want!  My wonderful community responded.

I decided that before we entered the building, I would let her read all the comments.  I gave her the phone after we parked the car, and I told her what I had posted.  Her first reaction was - "wow!"  cool! :)  She was overwhelmed by reading comments from people she's known since she was little, people she doesn't know, and people from NC, FL, PA and a couple from Peru :)  So, thank you.  You made her feel encouraged, loved and a little famous ;) lol
Once we made it inside, we checked in on the ground floor, then took the elevator to the 6th floor which has become all too familiar.

We check in the second time and wait to be called.  She seemed pretty relaxed.  But let me back up.  I mentioned above that this blogpost is also sponsored by Hamilton.  Let me explain.  We watched it for the first time over the weekend and Ella was very inspired.  I was as well...but for different reasons. lol.  She was inspired because she loves singing and acting.  I decided to download a few new songs for us to listen to on the way there and back, and imagine my surprise when I found the entire Hamilton soundtrack available on Amazon prime music - for free!  So, I downloaded some of the songs we really liked and surprised her with it on the ride down.  She belted out the words to every song and then we repeated them again :)  It was an awesome distraction.  So thanks Hamilton, Disney+ and Amazon for making that possible ;)
When she was called back, they took all her vitals (she's still 4'11...just can't seem to get to 5' 😂) and we got placed into a room.  CHOP has fun murals in every room and it helps us keep track of which ones we've been in.  Today, we got a new room with umbrellas...I tried to get her to take a picture with them but she declined ;) lol
The nurse and doctor were thrilled that she'd had no reactions with her last updose.  This was a long time coming!!  This process was supposed to be over in 3-5 months.  Instead, it has dragged on for 10.
I forgot her OJ to dose with so she had to dose with their applesauce.  She wasn't excited about that, but afterwards she said she wants to use applesauce everyday now!  So, I'm glad I forgot ;)  1/3 tsp is a LOT of peanut flour when you're mixing it with a bite of food 😝, but she put on the nose clip and ate it like a champ!

The nurse thought the nose clip was brilliant and said maybe they should provide those to all patients!  I said go for it - then they can't smell it!
She immediately dove into her popcorn and lemonade which is now her go-to after dose snack.  Your stomach has to be full beforehand, but you also need to snack afterwards.  This has become her ritual.  Once the taste in her mouth is gone, she removes the clip ;)

When they checked on her 15 minutes later she felt perfectly fine and an hour later, the same!  NO REACTION!!!  So incredible.  Although it was peanut flour, we still feel the celebration of her ingesting the equivalent to one entire peanut and having ABSOLUTELY no reaction!  CELEBRATE!

The next step is to go back in 2-4 weeks (depending on any reactions during that time period) and take with us a peanut M&M.

She will eat that (I keep telling her it tastes good but she's not going for it) as her dose for the next two years.  After that, she is welcome to try and increase her tolerance, but that is up to her...and it's a long ways away so we don't need to think about it yet!

We had a few questions now that we are nearing the end of this and our CRNP Elizabeth Hanna answered them all -
1.  if Ella accidentally ingests peanuts and we KNOW she has, do we skip the dose?  YES
2.  Once she is eating the peanut M&M every night, does she still need to rest 2 hours afterwards?  FOR THE FIRST YEAR OR TWO, YES.  THEN THEY START TO TAPER IT DOWN UNTIL IT IS JUST 30 MINUTES
3.  How often do we come in once she starts "maintenance" (one peanut)?  EVERY 3 MONTHS FOR THE NEXT YEAR.
4.  We didn't ask this, but she volunteered this helpful info - HOLD OFF ON EATING "MAY CONTAIN" PRODUCTS FOR 6 MONTHS.

Obviously, when we go to Peru we won't be able to go back every 3 months, but we'll continue the one peanut M&M per night and jump right back into the appointments once we move back to the States.

So, there you have it.  It seems like a miracle - although when I see her eat an actual peanut in a few weeks, I think it's going to hit home even more.  For now, we're enjoying the non-eventful dose today and praying that all her doses for the next few weeks will be the same.

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PLEASE SHARE!  This blog/post is not private.  I am writing them because so many people don't know about this treatment.  Doctors and Allergists don't tell you.  It's something you have to find out on your own.  If you ask them about it, they will try and answer your questions, but if they don't offer the treatment themselves, then I guarantee you they aren't freely telling patients that OIT is an option.  So, please pass this on to anyone you know that has an anaphylactic food allergy.

This is the go-to page that explains which OIT doctors are recommended and the homepage has all the private practices that are offering OIT.  Just search by state.  But now, like CHOP, a few public places are jumping on board.  If you aren't sure about your local hospital, CALL them!  If they don't offer it, look into the hospitals in the biggest cities closest to you.  Do your homework and check out their protocols (make sure they aren't just jumping on the bandwagon but actually know what they are doing!).  If you have to drive an hour or two every 2-4 weeks, it's worth it.  Believe me.  I've even met people that drove 4 hours.  One even flew across the country!  It's worth the minor inconvenience, I promise.  In addition, any age can do this.  When Ella took her first food challenge there was a 1 year old in there doing the same.  Ella said she wished she could've done it earlier - kids that young don't understand the implications of what they're doing so there are no nerves/anxiety.  If you can get it taken care of before they start school that would be a huge blessing.  Sending a food allergy child to school is terrifying.  They're in an environment (possibly for the first time) where you have very little control.  As much as you want to protect them, you just can't.  It starts to fall on their shoulders - at the age of 5 (which is too much to ask from a 5 year old 😕).  So, look into as soon as possible!!

I started writing about our journey back in August 2019 when Ella went in for her "food challenge" - here is the first link:

https://laurieslittlemonkeys.blogspot.com/2019/09/peanut-oit-my-first-food-challenge.html

From there I tried to write (sometimes Ella helped me) every trip, although I missed a few - and then we couldn't go for 3 months because of COVID.  If you're interested and want to know more, go back and read our journey!  We want everyone to have the freedom of living without the fear of dying anytime you put food in your mouth!

https://laurieslittlemonkeys.blogspot.com/2019/10/my-first-updose.html
https://laurieslittlemonkeys.blogspot.com/2019/10/boring-weekjust-what-we-want.html
https://laurieslittlemonkeys.blogspot.com/2019/12/ellas-thoughts-on-this-adventure-and.html
https://laurieslittlemonkeys.blogspot.com/2019/12/updose-5over-halfway-there.html
https://laurieslittlemonkeys.blogspot.com/2020/01/trip-6but-still-updose-5.html
https://laurieslittlemonkeys.blogspot.com/2020/02/trip-7-updose-6-almost-half-peanut.html

God bless and thanks for following our journey!!