Food for Thought

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Food for Thought – September 29, 2014 Edition

DIY Diagnosis: How an extreme athlete uncovered her genetic flaw – by Ed Yong. This is lengthy read but an amazing story about a patient taking charge of her own medical mystery.

Insurers Balk at Cost as gene tests unlock medical mysteries - by Julie Steenhuysen. Some good points regarding the cost benefit analysis of genetic testing. Can we really help patients?

#AACFamily Friday - Dana at Uncommon Sense is hosting AAC Family Fridays in October to raise awareness about people who use Augmentative and Alternative Communication. Go share your story.

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What have you been reading?

A New Chart and an Old Failure

The mini-cheesecakes are in the oven and the breakfast cookies are cooling. What is it about feeding people that is so deeply entwined with connection, comfort and healing?

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I couldn’t feed Aidan in his first year. His brain wouldn’t allow him to breathe, suck, and swallow at the same time. I pumped breast milk for him, hoping each day that he would get strong enough to nurse. He never did and I suppose this was the beginning of loss for me.

Our medical journey has certainly had its ups and downs and at times I’m aware that I’ve brought my A Game. I’ve been prepared both emotionally and informationally for many educational meetings and medical appointments. Garreth and I are weirdly at our best during hospital stays. I’ve charted seizures, medicines and bodily fluids. I have a firm grasp of Aidan’s challenges and, though exhausted sometimes, I’m mostly confident in my ability to care for him.

Except when it comes to feeding him. Here is where all logic leaves me. I feed Aidan, of course I do, and pack in extra calories whenever I can. He’s never grown well and I carry that guilt.

This week I finally took him to an endocronologist, Dr. Detective. She’s fabulous, very much on my side, and committed to finding out why Aidan’s not gaining weight. He had labs drawn and I felt a cold chill as I watched the diagnosis come up on the computer screen – Failure to Thrive, Feeding Difficulties and Mismanagement. Those words were never spoken to me, most likely because the doctor knows they’re loaded and unhelpful, but there they were blazing at me like an accusation. Dr. Detective helped me come up with a very concrete plan and affirmed everything we’ve been doing with Aidan for so long, but still, I cried myself to sleep that night.

Thirteen years later and my inability to nurse my son still haunts me.  In those early days, my greatest desire and the most primal task available to me to help my baby was stolen by his brain. I was powerless.

I didn’t prepare for this most recent doctor’s appointment and I made a bunch of rookie mistakes that day because I was so emotionally blocked. I knew I would be tasked with feeding my child again with purpose and intent. This isn’t the what’s for dinner tonight kind of feeding, but rather the did I remember the flax seed and oil kind of healing.

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So I have a new chart in the kitchen. I’ll check off each box and try to be gentle with myself. It’s all part of the journey and I know that emotion and logic will be in balance again soon.

Including Aidan

Inclusion is a trigger word for me. It’s the kind of word that makes me want to pull out all of my hair and run screaming for the hills.

My son Aidan has an undiagnosed developmental disability, and I have years of experience now with IEP meetings.

The first years of Aidan’s schooling were hard for all of the usual reasons. As his educational team, we did our best to include Aidan and learn from each other, but we also came to the table with different expectations.

While I will continue to beat the drum for inclusion at school, I realize that school is not the only place Aidan will experience life. While it hasn’t exactly been easier to involve him elsewhere, it’s been more of a priority.

Read the rest here…..