Big decisions today with the allergist

Tuesday afternoon, shortly after I last posted, I received a phone call from CHKD. I have been leaving messages with Dr. Konikoff's(GI) office a LOT lately because I need these prescriptions.. well apparently he put a set of eyes on my messages and then wanted an update on how Annabelle was doing. I was pleased to tell him she is doing very well. She is eating great.. although not quite as much as he wants.. but she's eating better than she was before. He asked when we would be seeing the allergist and I informed them that the appt was scheduled for September 20th. THIS news, he was not happy with. He wants us to be able to begin foods sooner than October (remember, our strategy at this point is to avoid a feeding tube. In order to do that, Belle needs to be taking in enough nutrients to maintain her weight. I begged for the opportunity to give her at least "A" food in hopes it will brighten her spirits and she'll accept all feeds much easier. Granted this could backfire and she get one taste of food and then push the formula away, but I at least have to give it a shot! If we end up scheduling a tube, I will know that I did the best I could.) About an hour later I received another phone call from the Allergy Center, asking that I come in the next day for an appointment at 1:30p. Oh, it's that easy? Hmm.. Okay, no problem I said. I wish I had more of a notice and I wish it could have been scheduled so I would miss less time from work - but when the doctor says jump, I ask how high when it comes to my babies health. I also want to take advantage of Annabelle feeling WELL right now. Her weight is looking good, she's smiling and were riding thru a good week.. we haven't had one of these in a while and I am enjoying every bit of it.

Wednesday, June 5th. I went into work at 6am so I could at least get a couple hours in before heading down to Norfolk Virginia Beach for the appointment. I left around 11am and picked Annabelle up. She was dressed cuter than ever, way to go Daddy! You did good this time!! :) We loaded the car and were full of smiles and giggles. She fell asleep shortly after getting onto 64 from 295 and slept until we got off the interstate and onto Independence Blvd. Great timing! She's doing better at sleeping for these trips, it makes it easier for the both of us for sure.

We arrived at the medical office with 15-20 minutes to spare. You can't beat that timing when you're on the road for over 2hrs. The traffic down there is so unpredictable, so I am glad we made it.

Registration was a breeze this time, fortunately they now have every bit of all our information so all I need to do is confirm who I am and we move over to the elevators. 2nd Floor button, up we go, down the hall and to the left for the waiting room. Not a minute after we sat down and we were called. Gracious, have I mentioned how much I love this organization?! The sweet nurses were very easy and patient with Annabelle, although at this point she was making it easy for them. She knew right away we were at a doctor's office and became her clingy, nervous self. While it breaks my heart to see her change like this, it also melts me that I get to take advantage of some pretty snug cuddles.

We got her weight, height, vitals and moved into our room to meet our new allergist.

Dr. Maples was very nice. We discussed her history briefly and then discussed food allergies vs. food intolerances vs. Eosinophilic Esophagitis. We discussed what we wanted for Annabelle and had some deep conversations regarding quality of life and what is safe. These have been thoughts, worries, fears and questions that literally keep my up at night. Food is something every one of us eat everyday, but food to Annabelle can kill her. I see this threat sitting in front of my babies life and someone asks if I want to give it to her and take a chance.... I get to decide whether or not to play with fire and gamble on giving her a better quality of life, or putting her in a bubble, isolating her from all things that kids her age do, risk developing issues with food aversion and losing those muscles and life skills that she is building during the developmental stage of learning to eat by not giving her food at all. If I choose this method, and I choose not to give her food back, we are going straight to the G-Tube. I know I need to give it a shot. I am gambling my child's health but if we come out on the lucky side winning, Annabelle will truly win tremendously. Even if this means she gets 3 foods. THREE. It will be worth it. I will get REALLY good at cooking creatively. I pray, pray, pray we can get thru this safely. I pray with everything inside me that we make all the right decisions for her in the next several weeks as we decide what to trial. I believe in the doctors we are working with to help guide us thru this selective process. I pray this is the right choice.

So here's how this works.

Annabelle needs to pass three tests. A skin prick test, a patch test and a blood test. We want to make sure that there is no way she is allergic to the food we will be trialing, because then that would just be a waste. If she can pass all three of these tests, all negative for an allergy, then we can put that food into the pool to consider using for a Food Trial.

Yesterday we began with the skin test. These are all too routine for Annabelle, although they're still not comfortable. They do hurt her and she's always allergic to things so I know they are terrible itchy and irritating. We tested for 17 foods yesterday. Some of them were repeats of previous tests but we were curious to see how much, if anything, has changed since. And sadly, most things she was very allergic to before (Cows Milk, Soy, Beef, Rice,) still remain the same. Some things showed less of a reaction (Barley, Oat, Rye, Peanuts).

We take these results and use them to determine what we will Patch Test against. The things that she tested high/positive to this time, will not even be considered in a patch test, there truly isn't any point. But the other things that were negative (Eggs, Corn, Chicken, Fish, Tree Nut Mix) and then also several others, we will setup a Patch Test.

Once we have the Patch Test results, we will do a panel of blood work. With all three of these tests, the things that appear least offensive for an allergy, completely negative, we will decide which of those to trial.

A Food Trial is several weeks long. It requires food diary's, a very close eye, looking for reactions or signs of an EoE flare. If we see signs, immediately we stop the trial and bump up the meds to bring the EoE back into remission. If all appears to be going well, we keep moving thru the trial. Once the trial is over, we schedule and do another Endoscopy to read Eosinophil counts. If the number is high, we consider this a failed trial and determine which food is deemed a 'Trigger Food', if the number is still low and hasn't changed, we consider this a passed trial and the food becomes a 'Safe Food'.

The appointment only lasted 2 hours, which sadly, is very impressive for an allergy appointment. Annabelle got to taste her very first lollipop. I wasn't a fan of the mess, and to be honest she wasn't either. She kept reaching for a paper towel every time it would drip. It kept her occupied though, and she deserved it. I left with an Action Plan for both an allergy reaction and asthma. We got another prescription to pickup two more Epi-pens and paperwork explaining the next couple procedures. I have 6 pages on how to read labels when avoiding Milk and Soy (as if I didn't know those already.. stay in the produce section - done.) and also paperwork for the Patch Testing. All in all I would say it was an eventful, long but productive day in Virginia Beach.

Annabelle did wonderfully on the way home. She slept 99% of the drive back and was a bundle of happiness when she saw her sissy and daddy when we pulled in the driveway. I am starting to believe that she is loving her sissy more than daddy lately. She yells her name out and it's beyond cute. They really love one another.

• Im waiting to hear from the hospital to schedule to come back to begin the next test.
• Im also still waiting for the reflux medication to be finished.
• I will be calling Social Services today for waiver services that have taken now 3+ weeks to begin, and
• I have two messages left for Lincare Medical for medical supply that hasn't been delivered to my house. I swear, this is a full time job in itself.

Most importantly, my 2in binder/EoE bible of all Annabelle records, note keeping, everything that I keep attached to my side.. it's overflowed and completely broken because I have crammed so much stuff into it. That means I get to go shopping an buy another :) There's MY highlight!!