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)

January 12th

I clearly remember going to our regular pediatrician for the second time since Elenor was born. We didn't go to the pediatrician often for our kids due to our more natural living style. She had been having an awful time with the reflux that she had been born with and I needed it to stop, it was unbearable seeing her in so much pain and eventually seeing her pass blood in her spit up.

They weighed her, she was only 9lbs 6oz. She would be 3 months old the next day. I quickly did the math, she had only been gaining a pound a month. The doctor came into the room, a truly loveable man, he wanted to get her length and head circumference to chart her. 3% for height, 5% for weight, and 97% for head. He started rapid firing questions at me about her development. She had already been diagnosed with torticollis  and scoliosis at a previous appointment with his associate. He thought something was wrong. Her head was too big, what about that weird patch of fur on her back, why didn't she use her legs, why wasn't she growing..

I felt like my world imploded. She is my third child, how could I not see all of these things so blatantly wrong with her?


He wanted me to start formula feeding to which I just couldn't stomach without more information, more opinions. He immediately ordered a referral to the Rehab clinic at the Children's hospital. He wanted blood work, muscle biopsies, and an MRI.

My world completely changed on January 12th.

(A sleepy 3 month old Elenor)