Big sister help #SMA

Annabelle is always eager to help, even when it comes to pushing Emily and her heavy medical stroller. Annabelle, you ROCK!!

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1st Grade: Author's Tea

They do some pretty fun stuff at Annabelle's school. Today was Author's Tea where each kid read a story, authored and illustrated by THEM!! Pretty cute. Annabelle's story was, "Dot Lady."

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Modified power chair Em's been practicing on.

We're getting Emily fitted for a Permobil power chair, so in the meantime she's been driving this make-shift chair at her elementary school. She LOVES it... and she is quite good. They are short on different types of driving switches, but she doesn't mind b/c she doesn't know otherwise.

Anyway, I don't recall the details right now, but you are looking at a TumbleForm secured on a power char with a couple of adaptive switches for going forward and turning Right. The reason she needs the TumbleForm is b/c the chair does not tilt or recline for proper seeting for Emily. It's a great rig for her to practice. So, we're praying that our insurance company will not makes our lives to difficult in the process of ordering the right chair for her. They are notorious for rejecting the notion that Spinal Muscular Atrophy (SMA), Type I kids even have the ability to drive. They typically do not feel it is in their best interest to potentially spend tens of thousands of dollars on mobility for kids like Emily. We will FIGHT though, and I am preparing for battle.

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Shen Leu Kwai Luh, "Pwau Pwau" - Happy Bday, Grandma!

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Happy Mothers Day!!! W/ some new homemade jewelry :)

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Families as Faculty Program

We had our first visit as participants in the Families as Faculty Program today and it was pretty cool. Basically, strangely configured and intensely needy families like ours get to host medical students to talk about our experiences with the medical community, good and bad, and how we have survived. And, as many of you know, there is not enough time in the world for us, let alone any other special needs families, to talk about our experiences. We are an E N D L E S S supply of information and opinions about the medical community. As Family as Faculty participants we have hopefully joined the ranks of those that influence the next movers and shakers of the medical community.

Today's visitors were soon-to-be 4th year medical students from the University of MD interested in Neuro Surgery and Neurology - so they're interests are more closely aligned with our Spinal Muscular Atrophy (SMA) ridden, neuro-centered world than some other diseases they might see - But with a Pulmonary-focused treat that they may have not expected. We live for adequate Oxygen exchange -- it RULES!! Atelectasis = BAD!!

We gave an unexhausted account of our life with SMA and tried to focus on what we have learned - and also what we feel characterizes a "good" doctor. I am sure they're heads were spinning. We often get the question, "do you guys have any medical background?" which is always fun - ok, selfishly it makes us (me) feel really smart. :)

Anyway, it was a good meeting and we look forward to hosting more students. Whenever we get one-on-one time with younger doctors it is fun for us to see them learning. Gotta run.

Peace <><

It's the simple things. A smaller bipap means more can fit on the vent tray!! #specialneeds

We just switched DME companies and the new one is giving us this fancy
new and smaller BiPAP, VPAP ST. It takes up less space on Emilys
stroller, and one less outlet, which is going to be great for
travelling. :) Cool beans!

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