Already?!

When we took Aurora to the GI back in January, we were told to wait 3-4 months to trial any more food. During this time we have focused on getting her to an even baseline. This, however, has been easier said than done. It seems just when we're getting her to that point, when she's finally had a good night's sleep several nights in a row, something happens. A cold, teething, ear infection, another cold, another double ear infection. We have still been unable to start on her 1 year vaccinations, she just can't seem to stay at a good baseline!!

Last week I got a call from the GI's office. She has an appointment at the end of April. Given Rosie's delayed reaction times, she wants us to start our first trial 2-3 weeks before the appointment. That means we start next week. NEXT WEEK. I am not prepared for this!! I'm still trying to get her to sleep like a regular kid! Food trials?! Inside I'm a mess. I took her back in to the pediatrician today to have her ears checked again. Her infection is still lingering, so we got some numbing drops and are staying on the antibiotics. (We can't start a trial if she's sick). We also had her lead level rechecked; at her 1 year appointment it was pretty elevated (an 8) so I have been extremely concerned about that as well. THANKFULLY it's normal!! (Insert ridiculous happy dance here).

So now I wait. Tapping my foot. Waiting for this annoying ear infection to go away and give my baby (and me!) some peace. And I'm waiting for the food trial list in the mail from the GI. It's a list that The Children's Hospital of Philadelphia (CHOP) uses for their EE (Eosinophilic Esophagitis) kids. So basically it's a big list of food, in the order we are supposed to trial. The problem (because let's face it, there's always a problem) is, even though I haven't seen it yet, I have a sneaking suspicion we have already trialed quite a few things on there. But it doesn't do anyone any good to worry about that until I get the list and know for sure. (But I'm still worrying).

My confession: I'm absolutely terrified. I just feel sick with worry. What food do we start with (Duh, I know, wait for the list!) What if she fails? What if she's in pain, again, for weeks on end? What if she KEEPS failing food? And just on and on...

BUT, I'm going to try to stay positive. She can't be allergic to EVERYTHING (can she???) It will be so incredible to have something she can eat! Right now, her special treat is an ice water in a cup, with a straw, from Sonic, so that she gets to feel included with her brother. I anxiously await the day she can actually sit at the table with him and they can eat lunch together, something that's so easy to take for granted.

Now..back to waiting..and worrying.

One Step at a Time

The next 6 months were spent focusing on food trials. Rosie had a blood test done to test for traditional allergies, which all came back negative (and the Allergist labeled her ‘Protein Intolerant’…off to find a knowledgeable GI!) At first we were doing week long food trials. Rosie was eating sweet potatoes, raspberries, blueberries, avocado, apples, peaches and some sweet potato puffs. At first she seemed fine with these things as we added them in... but slowly her good spirits started to fade. She developed a constant crusty eczema rash on her face that didn’t respond to any cream. She went from sleeping pretty consistently at night to being wide awake for hours at a time, to waking up screaming. I knew something wasn’t agreeing her, but the question was what.

The only way to find out was to pull ALL of her food. So we started back at square one with sweet potatoes. They went well for a few weeks, I had high hopes. But her eczema started to flare, then she got these cold symptoms, then she started vomiting after her meals. As soon as we pulled the food, her symptoms disappeared. And the same thing happened with white potatoes. Accidental ingestion of a serving of apples gave Rosie the worst case of crusty, oozing eczema I had seen on her.

And so it went. Food fail after food fail. Pears were our last trial and arguably the worst. I pulled them before she got to the vomiting stage, but even so, Aurora had 15 days of diapers filled with mucus and blood. This was right before her first birthday.

So by the time my Rosie turned a year old she had failed 11 foods and had nothing safe to eat, except Elecare formula. Instead of a cake for her first birthday (which was a BIG deal to me, my older son wouldn’t touch his cake at ANY of his birthdays!) I made her a giant box cake-out of hat boxes decorated with fabric and filled with toys. She LOVED it!! And seeing her chubby little face light up at the cake that was bigger than her was just overwhelming.

A few weeks after her birthday we made the trek to Kansas City again, to the new GI. She was finally formally diagnosed with FPIES. What a relief. To finally have the confirmation that I’m NOT crazy was overpowering- it was EMPOWERING. We were told to stop all food trials for 3-4 months to give her insides sufficient time to heal.

So here we sit, just waiting. Rosie is now 14 months old with still no food she can safely eat. Truth be told, it is nice to have this break of not worrying about feeding her something that will make her sick. It’s a terrible feeling, knowing you’re trying to nourish your child and instead causing them extreme pain. I do have to be very careful and watch her very closely…that cheerio her brother dropped? That piece of corn she snuck off the table? The tiny raisin she found under the couch? More damage to system, more nights of screaming and cramping.

It’s been a long year but we have learned a lot. My autistic son learned compassion and patience with his baby sister. My husband learned that doctors don’t know everything but if you keep pushing and fighting, eventually someone will listen to you. And I learned that as a mother I am equipped to face anything life throws at me. But I think we have all learned from little Rosie that no matter what you’re dealt in life, take it with a smile and keep a dance in your step because life is too sweet to take for granted.