It's Been Oh So Boring.....

Sorry, I know it's been a while. A long while. But here I sit. The night before my daughter GRADUATES!! We are nearing the end of this amazing journey. We have driven 7,136 miles so far, and I would do it again in a heartbeat. After the third, fourth, fifth updoses it all became so blissfully boring that I neglected to update this as I had nothing new to add. However, I do have something new to add. Hope. For all of those in "limbo". For all of those who just gave their first home dose. Don't get me wrong. We did have a couple setbacks. Illnesses. Some reflux in the beginning. A super swollen lip after a dose when I hadn't realized she had a cut in her lip. In fact, Ccwe ran out of her normal peanuts and I had to buy a brand I don't normally buy.  When she dosed with twelve peanuts her lip immediately swelled up. This was just days ago. A distinct reminder that yes, she is still allergic. A reminder to never get complacent, even months or years after graduation. She is protected, but still allergic. The lip swelling subsided with a little Benedryl and some chap stick, and all was right with the world again.

And here we are. Graduating tomorrow. And we are over the moon at all the possibilities open to us now. We have the best summer ever ahead of us! And then she starts kindergarten. Away from my watchful eye and allergy-induced helicopter parenting. Away from the safety of a peanut free classroom. And I will be able to breathe as I say goodbye to her and put her on the bus that first morning.  And every morning thereafter. OIT did that.  All of the amazing people that have posted about their experiences did that. The incredible Dr. Mayer and his staff did that. We would never be here without them.

To be fair, my daughter has never had an anaphylactic reaction. Her numbers were never incredibly high. But even if she had and they were, I can tell you with the utmost confidence that I still would have made the same decision. Even more so, in fact. I have witnessed some tremendously brave kids (with high IgE's and a history of ANA) face their fear and become victorious. They now enjoy a life of freedom. And Mom and Dad can worry just a little bit less. It is priceless. Here we come 24 peanuts! 

Onward and Upward - 2nd Updose!

Three trips down, only about twenty three more to go. Hopefully. And worth every mile. Although admittedly I cannot understand why I live in what is supposed to be a medical mecca and yet still have to drive three hours one way for this treatment. But now that I have met Dr. Mayer I might still drive the three hours even if it was available here!

After a couple episodes of vomiting (reflux) way outside of the dosing "rest/observation period" of two hours after her last updose, it was smooth sailing the last eight days. With the exception of one skipped dose due to a returning ear infection. We were safely able to updose again! And we were ready. Ten milligrams of peanut protein here we come!

After a quick bike ride and lovely picnic lunch to shake off the cobwebs from the drive, we arrived just after two thirty and were whisked back to the common room by the amazing and one-and-only Eileen. During our previous trips we have always had a private room, so this was our first time in a room with other OIT Moms and kids. And what an awesome experience it was. We witnessed a graduation, and these brave kids overcoming their own personal poison.  How refreshing it is to be in a room with other Moms that just completely get it. Don't get me wrong, all of our family and friends are amazing and incredibly accommodating and I thank God for that, but there is just something about the support of others that are going through it or have gone through it. It was truly inspiring. 

Now we are four days into the new dosage, and she has had a couple minor reflux episodes, although without vomiting this time. I understand this is quite common during the early stages, and if anything has reinforced for me how important it is for us to do this.  And just for the benefit of those considering OIT, she is completely fine before and after. She does not feel ill at all.  She is strong and determined.  (And not to mention can't wait to eat at a real ice cream parlor!). 

This is a marathon for us, not a sprint. So now we anxiously, but patiently, await twenty five milligrams.  Onward and upward!

First Updose!

Today, I was lucky. My husband has been on vacation so he was able to join us on our trek to Dr. Mayer's office and back for our first updose. I know I won't typically be so lucky and will be making these journeys solo with the kiddos. 

We had a plan. The plan was to be there hours before the appointment to allow for park and exercise time before dosing and the long drive back. There is a fantastic park just minutes from the office that has a beach, splash pad, nature center and animal park. Perfect place to blow off some steam between car trips to make it doable in one day.

After enjoying some quick beach time and our healthy packed lunches, we were ready for the task at hand. Today was a dual appointment. Since my daughter was diagnosed at sixteen months, we have banished peanut anything from our home. Which means my son, now three, has never had a peanut touch his lips. Today we were having him tested to find out if he would be joining this journey with his sister or munching on his first Reese's cup this Halloween. 

Dr. Mayer's staff efficiently and cheerfully whisked us back to a room, took both the kids vitals, and gave Ava her 6ml of grape peanut solution.  Ethan hopped up on the table and squirmed as his little back was lightly poked with the skin test. 

There we sat. Seconds ticked by in that little room as we waited and watched them both. And we waited. And waited. And nothing happened. Not a thing. Exactly what we wanted to happen. A slight hive emerged next to the positive control on Ethan's back. Exactly what should happen.

So we left with our new bottle of grape flavored peanut solution for Ava, and a prescription of Reese's Pieces three times a week for Ethan. (Yes, you read that right!)

I thought we were home free after a not-so-healthy dinner on the long drive home, some playtime outside, bedtime stories and goodnight kisses. Just as I was starting to prepare for the day ahead tomorrow and getting ready to finally sit and relax, Ava comes out of her room (which is normal for her), and tells me that her belly keeps hurting (which is not normal for her.). Ugh. After a few minutes of writhing around on the floor and telling me that her belly hurts, she throws up. So now a million questions start popping up in my head. Is this dose related? It was seven hours ago. Is this because of the long car ride and the crappy food? (Why is it so hard to find healthy allergen friendly food on the run?) Is it a stomach bug?  Please, no! She just updosed today! So now, I wait. Again. Hoping for nothing to happen. Again.

Day 1

We made it.  Day 1 behind us.  And you know what?  It was pretty painless.  All those months of research, and that scary first phone call to the doctor (because there are many), and "lurking" on OIT facebook pages, and wondering, "can we really do this?"  Yes, you can.  Believe me, I know we have a long road ahead of us, but to get to this point in the game is huge for us.  The weight lifted off of my shoulders right now is, as my daughter likes to say, "ginormous"!  

The first dose was big.  Then I relaxed a little for the next few doses.  By the time we were ready to start the afternoon doses, I became nervous again.  This is where the reactions occur.  What reactions?  Will she throw up?  Will she have hives?  Will she start coughing?  Will she get a tickle in her throat?  For the love of God, will we have to epi?  (This is rare during Day 1 and during the process.) Dose after dose would come and go.  "How do you feel Ava?"  Good!  She would say.  During this time, the amazing staff came in and walked us through every. Last. Detail. of the process.  The nurse came in and had my husband and I role play having to Epi.  With both an Epi pen and an Auvi-Q.  With the training injectors and an ACTUAL injector (into a towel!).  We left with a comprehensive Food Allergy Action Plan to share with her caregivers. Not just, "Watch for symptoms and you'll know when to Epi."  She and the doctor answered every single question (because there were a million) that we - OK, I - had. 

Even though Ava went through the entire day without a hitch, this process, this face-to-face, this meeting other OIT parents and kids, was cathartic in and of itself.  And now I feel prepared.  Prepared and ready for anything that comes our way.  And confirmation that we absolutely made the right choice. Even if she had had a reaction, we were in the right place. And we had a place to go for answers any time of day or night. 

For me, NOT trying this was not an option. Even if we do happen to come across obstacles that cannot be overcome (also rare), we would still be no worse off than before we began. But if we are successful? Well, the benefits are priceless. 

So home we went with our little styrofoam cooler of fruit punch flavored peanut solution, relief and hope for a better tomorrow.

The Night Before Day 1

Well, technically it's not day 1. Day 1 begins when you learn of your child's allergy or receive a diagnosis. It has been a LONG journey to get us to this point. 

From red cheeks after a peanut butter laden wash cloth wiped her face to several blood tests, many homemade cupcakes, turning down invitations and countless hours of research later, here we are. Three plus hours away from home and ready to wake up tomorrow morning and intentionally give my daughter peanut. It is surreal. It is almost as if I am watching this from afar but not actually taking part. 

But as I lay here, with my darling daughter next to me, before we begin part 2 of this journey, I am humbled and calmed by all of the support, research and treatments that are now available to families like ours. I'm a fixer.  I don't succumb to the status quo.  I find solutions.  And I know this is the right thing. Even though there will be bumps. Even though we have to commit to this six hour drive twice a month. (We feel lucky that's all it is, actually. I have heard of many families moving from overseas to undergo this treatment.) 

Soon, my daughter will be safe. Safe and free to enjoy birthday cakes, ice cream from ice cream parlors, attend sleepovers, camps, and not be relegated to the "peanut table" when she begins kindergarten next year. I am giving my daughter her childhood. And while I will probably not get much sleep tonight, knowing that is all I need to remember tomorrow.