Monthly Archives: April 2012

Equipment

It wasn’t the kind of birthday present that you necessarily want but Elie’s arrived this weekend.

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from left: Oxygen tank and Ambu-bag, pulse-ox monitor, oxygen travel tanks, suction machine, Cough Assist, and oxygen concentrator.

 

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Avery just made CNN homepage!

Awesome!

http://www.cnn.com/2012/04/28/us/texas-baby-bucket-list

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I’m Four!

 

Lordy, lordy, looks who's four. Me!

The opening lines of Chrysanthemum, a gift from family in Wisconsin (and one of our favorite books), say best what we were feeling four months ago today …

The day she was born was the happiest day in her parents’ lives.
“She’s perfect,” said her mother.
“Absolutely,” said her father.
And she was.
She was absolutely perfect.

Happy Birthday Elie!

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Inspiration from Avery

I think I’ve read Avery’s entire blog, and watched all her videos now.The first (of many) SMA chronicles that has made me happy instead of sad. So I am taking inspiration that it’s ok for us to be happy too!

Please help make Avery’s story go as viral as possible (it’s Elie’s story too, just much more entertaining to read;) )

May 1 (Tuesday) everyone is to blog Ellen Degeneres to get Avery on her show and raise awareness of SMA.

Avery’s Bucket List

 

 

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Updating the blog

Brightening up this page a bit.

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Avery’s Bucket List

This little girl is living up what time she has due to SMA too. Great blog.

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Elie & Mommy go to Piedmont Park

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Dr Brooks and our first post-diagnosis Pulmonogy appointment

We started out the appointment very much on the wrong foot with a few nurses who did not know our diagnosis (one asked us that since Dr Brooks was running late, if we’d like to meet with a NP instead! Are you kidding us? This is NOT an appointment that a NP can handle). Once Dr Brooks did make it in though, she proved why she was recommended to us. She understands the diagnosis, the care choices, the problems and the variations of progression of what we are facing. She will be our point person for all care moving forward.

Dr Brooks walked us through the machines and ordered the equipment we will need. We will be starting out with an Ambu-bag (for breathing assistance) and a suction machine. A Cough Assist machine is also on order but will take longer to come in than the first two. An assistant gave us an overview of how to use the ambu-bag and suction equipment that we will be getting.

Elie is now clear for her g-tube surgery. We will be meeting with the highly recommended GI surgeon (Dr Wulkan) at Egleston (instead of Scottish Rite) next Wednesday, which is great since Egleston is within walking distance of our house instead of the 20 minutes to Scottish Rite.  After further discussion with Dr Brooks, we will not be doing the Nissen-fundoplication wrap of Elie’s esophagus, but instead control any reflux with medication. This will make the surgery easier on Elie’s respiration and lessen the time she would need intubation. We discussed our concerns about when to time the g-tube around our trip to Charleston for Dana’s wedding and Dr Brooks replied, “you seem to be thinking ‘weeks’ before we start to see Elie’s respiration be compromised, I’m looking more at ‘months'”. This is great! in all likelihood we will be able to spend a full week in Charleston and wait for Elie’s g-tube surgery until after we return .

Despite the scary topics we had to discuss, the appointment went well and we are extremely glad to have Dr Brooks’ help.

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Swim in style.

For the modest baby, a new swim diaper. (courtesy of Advance Auto gift)

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Astronaut Elie

5am: waking up dreaming of Elie on a space station. A whole world without gravity pulling against her. It was one of those dreams you close your eyes and consciously continue even after you wake up in a heavy reality.

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