Waiting is by far the hardest part of this journey.
We waited for seven days to hear the biopsy results from Maya’s Upper Endoscopy. In my heart I knew what the results would be and to be honest I was kind of hoping for a diagnosis. A diagnosis would give us a starting point rather than raising more questions. When Maya’s Nurse Practitioner called me to let me know what the results where I answered the phone with a giant lump in my throat. I was so very conflicted and felt terrible that I had been hoping for a definite answer.
The results did not surprise any of us.
Maya undoubtedly had Eosinophilic Esophagitus.
I probably freaked out our sweet Nurse Practitioner because I was so relieved and happy to have an answer. While she had me on the phone she told me what our first step was going to be. A medicinal slurry of sorts was our first line of treatment. It involved swallowed budesonide, ten packets of splenda, and pharmaceutical cherry syrup.
I seriously thought she was joking with me when she gave me the mixing instructions.
After I copied down everything and noted the things I’d have to find we talked about how long we’d have to be on this ridiculous slurry.
She told me we’d let Maya have three months with the slurry and then we’d re-scope to see what her allergic cell count was. If the count was worse or the same we’d have to try an elemental diet.
At this point I was not comfortable at all with the idea of an elemental diet. I didn’t want to take food away from my daughter who was struggling so much already. In my efforts to keep her from needing to go elemental I called and set up an appointment with her allergist so we could eliminate the offending foods and avoid the elemental diet.
We skin tested for everything we could think of that could be causing such a tremendous amount of reflux along with random outbreaks of hives.
Friends, just about everything we skin tested for came up positive. We tested for 27 foods. The only things that did not come up positive were beans, egg whites and shellfish oddly enough. She still had some fruits and veggies, but no nuts or meats whatsoever. We got those results the week of Christmas, 2010.
My world came crashing down.
I had just gone grocery shopping a few days prior and had already spent my weekly budget to get food for our family. It took everything I had to keep a straight, positive face and a sweet spirit for Maya. It’s so hard to put on that brave face when you really don’t know what on earth you’re going to do.
My help when I feel completely out of control and lost is to make lists. They help me see the problem at hand and the steps I can take to make it better.
I went straight for my notepad and started listing everything I could think of that Maya could eat. At this point she still had soy and we gained egg whites.
I made a quick little plan and priced everything to the best of my ability. I needed about twenty dollars to make do for a few days until our next grocery trip.
We just so happened to have a very large change jar that was almost full that we were saving for ‘just in case’. This was my just in case. I took my humble jar to a coin counter and got the money I needed to feed my daughter.
We then went to our local natural food store to gather the things we would need. I remember veggie burgers and gluten free buns being on our list. We got some egg whites, some shrimp, and plenty of rice, veggies and fruit to fill in the gaps.
After we got home I fed everyone a quick lunch and we headed out to take my brother who had been with us to help me handle everybody during the appointment back home.
I let the kids run and play while I talked to my mom. Really though, there wasn’t much talk. I looked at her, gave her a brief summation, and then proceeded to ugly cry into her shoulder.
The pain, the heartache, the impossible all pressed in and it felt like they were crushing me. I wanted with everything I had to make it stop hurting.
I hate crying.
The puffy red eyes, the smeared mascara, the embarrassment and the sad face simply don’t appeal to me. I hate the hurt that starts the tears. I generally go to mad so I don’t have to feel the hurt. (Yes, I know this isn’t the best way to handle the situation but I had to be strong that day) As I sobbed into her shoulder I kept saying “It’s not fair…It’s not fair!”.
I was so….angry.
I hated the hand my sweet little Maya had been given.
My amazingly awesome mom just held me, murmured “I know sweetie” and let me get some of my pain out.
After I came to a sniffling halt and cleaned up my streaky, bedraggled face I actually felt much better. Had I not been able to see my mom that day I think I very well could have crumbled spontaneously at some random point not conducive to crumbling.
I thank the Lord that she was my angel that day.
With some of the pressure relieved I was determined to make sure Maya would have plenty of tasty things to eat come hell or high water. I was not going to let a limited diet get in the way of her sweet spirit and our Christmas.