Onions

On Monday this week we saw a new endocrinologist. When you say her first and last name together it sounded like her name was Onion. Which made me giggle. She told us about how they looked at her growth hormone levels which could be erratic since growth hormones shift at any given point in a 24 hour span of time. They also looked at her base capability of making them. What she told us was that she doesn't have detectable growth hormones but that she's able to make them. Then she said it could be kidney failure, celiac disease, or poor nutrition. That last thing made me want to punch her in the face. From day one of my daughter's FTT diagnosis they keep asking if we feed her and what we feed her and how often. It's ignorance at this point. She eats 3 meals a day, 2 snacks, and breastfeeds in between all of that. To say she 'might' be underfed is a good way of 'maybe' getting me to attack you. :(

Needless to say that just like the geneticist at the same hospital we probably won't be returning. I'm not in the mood to be treated like that. And that doesn't even hit the "tip of the iceberg" which is that they didn't have her bloodwork from 4 weeks ago so a) they were going off of stuff from the summer and b) they needed to take more blood. In Elenor's lifetime she's had 52 vials of blood taken. FIFTY TWO. And what do we know today that we didn't 10+ months ago? Do we have significant answers?

A very good friend of mine listened to me prattle on after this appointment and told me that she thinks I need to step back and stop trying to find an answer. That will come in time. I need to focus on my beautiful little bean and just treat her like I would any other baby I had. She's special, and different, but she doesn't necessarily need to see 11 specialists at 2 different hospitals at the moment. It's okay to take a break. It's not permanent but just a breather.

So consider me on hiatus! Don't tell the hospital - they may go broke without our money! (lol)