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Emma Morgan - Journal

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Posted 2014-02-25T15:40:07Z

A Little McDonald's Never Hurt Anyone

In 2012 I worked for the hospital where Emma was admitted earlier this month. At the time I came on board, the hospital had just finished fundraising for Wisconsin’s first Ronald McDonald Family Room. I had heard of the Ronald McDonald Houses, and had admired their work from afar, thinking how wonderful it must be for families to be able to stay so close to the hospital while their child was in the hospital. As I worked with an amazing team on the implementation of the Ronald McDonald Family Room, I learned how absolutely phenomenal their work really is.[...]

Posted 2014-02-23T20:40:27Z

One in a billion…

Well, actually one in 7.046 billion. We met with a geneticist this week, and received the results back from Unique’s international database of rare chromosome disorders, and had it confirmed that Emma is literally the only person with this exact mutation. There are two other families in the world with interruptions in a similar place, but not the same. One of those families is in Australia and the other in Canada. It’s really mind blowing.[...]

Posted 2014-02-18T03:16:53Z

Let the appeal begin...

We have packaged up our appeal documents and mailed them in. It is absolutely nerve wracking. We plan to appear in person at the committee meeting. We couldn't find any resources online to help us write an appeal for coverage for an infant below coverage age, because in most states there is no lower age limit. So, we have decided to share our letter. If it works, hopefully someone else may be able to benefit from it. [...]

Posted 2014-02-14T03:20:52Z

...and then THIS happened!

Emma's therapy session was amazing today. I'm so glad it happened! I learned how to apply pressure to Emma's body in a calming way -- it is a technique used to help children with sensory processing disorders be present in the moment. Emma just melted in my arms when I started. Seriously, it felt like a life changing moment.[...]

Posted 2014-02-07T03:59:22Z

A person's a person, no matter how small.

I've been thinking about that Dr. Seuss quote today, as we muddle through another round of diagnosing and insurance questions.

On Monday, we took Emma and Daniel to a neuropsychologist for Autism Spectrum Disorder (ASD) testing. Dr. V at the Clinic was friendly, approachable, and made the children (and grown ups) feel at ease. She observed Daniel and Emma while they played, and took notes. Yesterday Adam and I met with Dr. V without the twins, and answered a series of questions from three different autism assessment tools, and provided information about Daniel and Emma's medical history.[...]