updose #5...over halfway there!

Number 5!!

Well, everything that could've gone wrong this morning seemed to have gone wrong 😜.  We left late for the train station and halfway there realized we left her epi at home and had to race back to get it.  We arrived at the train station only 8 minutes before the train was to leave.  That's when I realized that I booked the wrong day for the train, so I had to book it again real quick with my app because there were too many people in line to do it in person.  Thank goodness there were still seats and it wasn't full!!  But now I have to call and see if they'll credit us with the train we paid for but didn't take!  ugh!

Once we got on the train (phew!), it got delayed because something broke down on the track.  The conductor apologized for the delay and said that we were lucky we didn't have to stop altogether...so I guess that's a plus! 

When we arrived at the train station in Philly, we called an uber because it was very cold and we didn't want to walk.  The first one came and went saying we weren't at the right pick up spot (he was wrong).  The second one was very nice, but went the wrong way and a normally 7 to 8 minute ride took 15 minutes.  Overall, instead of getting there almost an hour early like we should have, we got there five minutes late!  Thank goodness for the train though because traffic was terrible. 

Ella had no issues with her last two weeks of doses so she "graduated" from oat flour mixed with peanut flour to just straight peanut flour.  we have been looking forward to this! Why?  Check it out...

the flour on the left is what she has been doing for the last two weeks, the tiny bit on the right is what she is doing now!

She had updosed to 2 teaspoons of oat/peanut flour...which is a LOT of flour to mix with something.  It thickens very quickly and it has a not so yummy taste.  Ella had a rough week making herself take it every night - gagging her way through her D'animal mix.  So, when she graduated to just 1/16th a teaspoon of peanut flour we were ecstatic!  It's nothing!  It'll be a piece of cake! 

Well, we were wrong 😢 Yes, it was a smaller amount, but since it is straight peanut flour it has a strong peanut smell.  She smelled it before the nurse even handed her the cup :( The smell alone was enough to make her queasy.  Drinking it upset her stomach.  We had to stay an extra 45 minutes to make sure she was okay because she kept having stomach pains.  She fought through it though and we stayed distracted by playing games :)

Since we had to stay late, we couldn't eat lunch and still make our train, so we decided to get a later train and eat a slow-paced lunch at the train station (we were hungry!).  We got home an hour later than expected and a little tired from the fretful morning, but it certainly could have been worse!

After doing this dose for 3 nights though, I can see that it's only going to get harder and harder, not easier like we were hoping.  Please keep her in your prayers.  She wants to do this, but forcing herself to drink the "concoction" is not easy.  Every night is a battle.  It's still giving her some stomach pains - which could be the peanuts or it could be anxiety.  Either way, if it's this difficult with just 1/16th of a teaspoon, I can't imagine what 1/2 a teaspoon will be like! 

She only has 3 more updoses after this (she will be going back every month now instead of every two weeks).  And then her last "updose" will be a full peanut which she will do in a different part of the hospital closer to the ER.  That last step is called the peanut "challenge".  That is our end goal, and we'll hopefully get there in April!  That would be an awesome Easter present :)

It seems like an eternity away and it sometimes feels like an unattainable goal.  Please pray for resilience, no reactions and for peace - she could use it!

God bless and have a Merry Christmas!!

Chillin in the train station after lunch :) 

Ella's thoughts on this adventure and some problems we encountered last month...

It's been 4-6 weeks and two doses since our last blog post! We got some disappointing news after her second dose.  She had a big reaction one evening in October and we ended up in the emergency room.  Thankfully, we never actually had to do the epi pen or check in to the ER.  We got as far as the waiting room and stopped.  After experiencing some stomach pains, then a stuffy nose which progressed to breathing problems, she took some Benadryl and we headed to the ER while I talked to the doctor on call.  From the time we got out of the car to the time we entered the building, the medicine must have kicked in because she started to breathe easier.  So, we sat in the waiting room for 30 minutes to make sure everything was fine.  Once we felt assured that the reaction had passed, we went home.  Because of that reaction, her allergy team decided that it would be best if she goes to CHOP every month instead of every two weeks. 

doing math homework on the train :) 

This would mean, of course, that the process would take twice as long as originally intended.  We were disappointed, but in the big scheme of things, it's not that big a deal.  In all, I believe there are 9 up-doses - including the final peanut challenge.  So, it meant extending the process an extra 3 months. 
However, after doing very well the last three weeks and having ZERO reactions, they decided to try the two week up-doses again.  Yea! (i think lol).  So, we're praying that there are no reactions.  We will do our part by making sure she has a full stomach beforehand and that she rests completely for the two hours afterwards.  The two reactions that she has had both came when we went out and did some "light" activities 30 minutes to an hour after her dose.  We won't do that anymore! 

#4!

Yesterday, she had her 4th updose.  She went from one teaspoon of oat/peanut flour to two. 
This is a big jump and we were a little nervous.  It's also a LOT of powder to mix with Danimals yogurt (which is what we are now using).  She has a hard time not gagging while drinking it because the taste is bad!  The good news, is that this is the largest amount of powder she'll have to do.  From here, she goes to straight peanut powder and it will be a verrrry small amount :)   Hopefully we get there in just two weeks!
Here are a few pics of our trip yesterday. 

waiting for the train when it's freezing outside isn't quite as fun:) 

CHOP has beautiful paintings on their walls :) this week, we got the "elephant room"

taking her dose and trying to keep it down!

what has now become our tradition - eating at wendy's in the Philly train
station while waiting for our train home :) 

Ella had a writing assignment in school to write about a "personal triumph".  So, she wrote about her journey so far...enjoy :)

 Overcoming Allergies

By: Ella Juarez

      As soon as my mom and I stepped out of the train station doors in Philadelphia, we heard and saw all sorts of commotion outside.  Graffiti was sprayed on almost every wall. The colors ranged from red to purple and every color in between. The car horns honked furiously and bicycle bells dinged with their bags in the little baskets that rustled throughout all the streets. We looked up and saw that the clouds danced happily to the rhythm of the street song. My mom looked at the GPS on her phone, located our hotel, and we started walking. Me and my mom started taking the steps of a lifetime adventure.

      “Hurry up,” My mom said, waiting for me and becoming impatient “it doesn't take that long to eat Wendy’s!”

“You don't know that!” I said, my mouth full of hot breaded chicken nuggets, with crumbs coming out of my mouth. After a little while, I’m done eating, and we already started walking, for we didn't want to check into our hotel any later than 7 o’clock, and it was already 6. We walked, and walked, and walked, admiring the scenery every step of the way. There were construction sites, buildings as tall as skyscrapers, and cars turning left and right and the traffic never stopped. After about 20 minutes, we were on the sidewalk leading to our hotel. Around it were restaurants and shops. The automatic door kindly welcomed us into the hotel, and what we saw! It was very beautiful, and had decorations in the perfect spots. My mom checked us in, while I almost fell asleep on their extremely soft couches in the lobby. We got our keys, went up the elevator, and started unpacking in our room. When we finished, it was 7:30, so i decided to make microwave popcorn and find movies on the TV. My mom and I decided to watch guardians of the galaxy until 10:00. Then we went to bed. What was bad was we had to wake up at 7:00 AM to walk to CHOP. so we had to get ready really quickly and get out the door. Once again, my mom pulled out her GPS, and we started walking to the hospital. After turns, walking, crosswalks, and more walking,we arrive, but then get lost. A very kind nurse directed us to CHOP. It was so cool! We waited patiently (well not that patiently) until our nurse came for the qualification to see if we could do our dose. The waiting room was very children friendly, a lot of posters and colors. “Please follow me to the peanut test.” She said. I felt scared. My nerves suddenly awake when they heard the sound “peanuts.” My stomach tingling as if spikes were poking through it. This was it, we step into our small curtain closed area, I sit down in what looks like a fancy dentists chair, and out comes our nurse. She came with a bowl filled with the tiniest amount of oat and peanut flour. We give her the pudding that we brought from home. She leaves to go to mix it up in the back room. I hear a baby’s voice through the curtain “a baby is doing this OIT?” I thought to myself. It kinda looked like my mom was thinking that too. My thought burst when my nurse came out again with the pudding all mixed into the oat and peanut flour. The confusing mixture of my first dose ever, the mixture of pudding and peanuts, was coming straight towards my mouth, not hesitant one bit. And chomp! I have eaten my first dose ever. We waited for about 30 minutes. “I’m back,” Our nurse said “and I have your second dose now”, which was a little bit more than the first dose. And then this repeated again, but then I started feeling bad. So we waited to see if I would have an even bigger reaction. Good news, I didn’t. Afriad I might get sick again, we stopped updosing for the day. I got to go home, and then my mom got an email. We qualified! My whole life, changed forever. A small day that will be one of the biggest days ever in my life, just ended. My fist real dose starts tomorrow at 9. So we had to be there as quickly as possible.

     That is the story of my trip to Philadelphia and the trip that will and still is changing my life. Right now I am at 1 teaspoon of peanut flour and oat flour which is a lot. That one trip meant so much to me and my health and future. The trip that started a whole new adventure...