Share. Connect. Love.
We're starting to sound like a broken record, but we couldn't be more honest if we tried: This really tough experience has shown us how much goodness there is in the world, and how strangers can make us feel so loved. FEEL GOOD POST ALERT!!!![...]
This morning I received a phone call...
WE WON THE APPEAL![...]
We are home!
Emma was hooked up to the EEG monitor for 28 hours in total. She was a superstar.[...]
Well, today has been long (as predicted) and, hopefully, valuable. I wish I had the faintest idea what each of the 21 squiggly lines running across Emmy's monitor mean, but other than understanding that her heart is beating regularly I am at a loss. We will meet with her neurologist tomorrow around lunchtime. Fingers crossed for some results then![...]
We are settling in to our room (the same room we were in before!) and even have some of the same nurses, which is comforting. Emma has had two of the presumed "drop seizures" since she had the EEG attached, which means that the doctors will have good data to look at. [...]
Thank you.
To every single one of you who gave, whether it was a box of cereal or a financial offering: Thank you.
To those of you who have held, and continue to hold Emma in your hearts: Thank you.[...]
It’s been a while since we blogged, as we were relaxing in a week or so of no real symptoms. Emma had had such a fantastic week, we were starting to forget…[...]
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.[...]
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.[...]
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. [...]
