Going to Chicago

I am debating where to start explaining the events of the past week. Let me start off by proclaiming, “I am SO glad it’s Friday!”

Sophia started solids again. She failed them miserably, again. As of today we have no safe foods besides Neocate Nutra, don’t get me wrong I am so thankful for that! But she loves to eat.

I called the GI’s office and gave them the update, per their request. After speaking with the dr, the nurse returned my call and told me that he’s not worried about her not liking solids at this point. She needs to have 40 oz daily of formula and neocate nutra to meet her nutritional needs. After hearing this all I could say was, “WAIT did you say ‘not liking solids’…no no…she loves foods. It’s the throwing up, bleeding butt, reflux and not sleeping she doesn't like” aaaaaaaaannnnnnnnnnnddddddd she ignored me and continued on as I said nothing. She said that the dr wants her to see an allergist. I explained he already referred us and we saw him twice over the last month. When I explained what the allergist said, she had the nerve to tell me it was hearsay and she needed written statement from the allergist. I was about to blow.  I calmly said goodbye to process.

I asked all of my lovely ladies on my forum boards about GI issues and FPIES on what to say/do next.

The next morning I woke up to a voicemail from the GI’s office and the nurse explained that all the notes from the allergist was in her file and the dr looked over them. Nothing more, nothing less.

I called the allergist/immunologist’s office to let them know that the GI wants her to be seen again and they were nice about it, even though he said that the allergy part is GI’s problem because it’s not an actual IgE allergy and he is treating the immunology part.

At this point, I was again, frustrated. Each doctor was pointing their finger telling me to go to the other.

There is only 1 FPIES knowledgeable doctor in the state of MI. I wanted Sophia to see him, even though the wait is months to get in. Even if she doesn't have FPIES, she has SOMETHING and they need to figure it out.

On the forums I was referred to a Dr just outside Chicago. I prayed about it. I felt this was right and decided to give the office a call. It would mean driving 5 hours  and paying out of pocket to see this Dr (but if she helps Sophia I would pay 100x that). When I called, I actually SPOKE to the Dr. She was amazing. She talked to me, made payment arrangements and she said she will speak to Sophia’s Dr’s up here for us! WOW. I made the appointment a week from today! It is so amazing to know that we should have some answers 1 week from today!!!!!!

I don’t think this next week can go by fast enough. Seriously.

So I pray that this is exactly what Sophia needs, that we were guided correctly and we will FINALLY get SOME answers.