Monday, September 30, 2019

Chasing Rainbows Through Tears

I didn't take my phone out to document the moment. But I'm pretty sure I can remember forever anyway.

Today was no school. It's a Jewish holiday and we have the day off. Perfect for scheduling an appointment that both Scott and I need to take Abigail to.

The endocrinologist. Anna has been teasing her sister {in a sweet way} that it's the "short doctor".

In a way she's right.

Her primary physician and her Gastroenterologist requested that we go.

She's had bone scans for her height and weight - trying to figure out why she just won't grow. It is due to her EoE? Or is there something else.

There's nothing else I'm sure but it sure is hard.

Abigail is brave.

She's been dealing with a chronic disease since she was first diagnosed at 22 months.

She's happy - go - lucky. Teachers love her, doctors love her, nurses leave their shifts to visit her, we adore her.

But today was weird, different.

Another doctor appointment. Nothing new.

But today, out of the blue, she got off the exam table, climbed into Scott's arms and cried.

She was tired of doctors. Tired of having to work at gaining weight. Tired of the ongoing, life ongoing, struggle with a life like this.

This new doctor was brilliant - and she went over things so very carefully with us. Left for a while. Examined the bone density scan. Came back and decided on more tests.

Concerns about bone health, weight, height among other things.

I scribbled down notes as I always do in a medical notebook too full for a twelve year old.

She is quite certain that Abigail's growth is compromised by the medicines she has to take for EoE. Stopping growth is a side effect.

But she can't go off the medicine. The medicine allows her to eat - and that is quite important.

Based on the charts and what they see now she is predicting her at a height much shorter than 5 feet.

So we'll do more tests next week and meet again with all of these specialists.

Feels like chasing a rainbow sometimes - there are no concrete answers. Just a circle of 'these are the concerns' but there's nothing we can do about them because of the meds she needs.

I liked it better when she was little and colored through the appointment. She had no idea what was going on. She listens now and even participates in the conversations.

And cries.

Cries as we chase rainbows through tears.

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1 comment:

  1. Abigail is brave and beautiful and so very sweet. We will be keeping all of you in our prayers when she has her tests next week.

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