Author Archives: Darin

Rest in peace Elie Bean

I remember just after Elie was born in the early morning hours on December 28th saying aloud that she was a Wednesday’s child, but not immediately remembering from the rhyme what that was. The attending physician began reciting it as if to also remember …

Monday’s child is fair of face,

Tuesday’s child is full of grace,

Wednesday’s child is full of …

… only to trail off when he got to that point and then muttering that he too couldn’t recall. I suspect it really came to him as it did to me. Wednesday’s child is full of woe. Not being superstitious I remember smiling at the doctor’s sudden forgetfulness.

We received Elie’s diagnosis on Wednesday March 14th, so I guess it was altogether fitting that she chose this morning, Wednesday June 27th to say goodbye to us, taking her last breaths in our arms, a day shy of her 6 month birthday. She was just as beautiful on her last day as she was her first.

We are feeling tired and empty and will miss her dearly for every day of our own lives, but thankful to be surrounded by family and comforted by our friends, colleagues and the many members of our medical team who grew to love her just as much as we did.

For those of you who have been following this blog these many months, it should be known we paid little attention to the poem. Our goal became to keep our baby girl as happy and comfortable as possible despite her uncertain future. There were many hours spent playing, reading, singing, swimming and taking Elie with us on long walks. Balloons and kaleidoscope apps were favorites. Time spent with our families and friends were also special, a trip to Charleston for her Aunt Dana’s wedding particularly memorable.

For all who have kept us in your thoughts, hearts and prayers these many months, thank you.

Rest in peace Elie Bean.


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Back in the PICU

Elie, Mari and Cheez-it.

Monday morning Elie went unresponsive and stopped breathing – her heart rate dropping to around 20 BPM. Nurse Agnes and Mari were able to successfully administer extra oxygen and rescue breaths so that by the time the paramedics arrived, Elie was breathing on her own again. Following a short ride to the hospital she was admitted back to the PICU, under the excellent care of many of the same CHOA doctors and nurses that looked after Elie following her G-tube surgery a few weeks ago.

We will likely be here a while. Despite our best efforts (increased frequency of cough assist and albuterol), the atelectasis in her right lung has gotten worse and is also now affecting her left lung. Her respiration rate is slowing and she requires more oxygen to keep her saturation levels up. Her daily naps are increasing in both frequency and duration. She often breaks into cold sweats and her cries are growing weaker. As our pulmonologist put it to us last week, she’s running a marathon every day.

We’re continuing to work with our GI docs to come up with a better plan to address her nutrition. The respiratory therapy is pushing air into her stomach as well as her lungs, leading to the bloating and discomfort that results in her vomiting.

While Elie is often anxious she doesn’t appear to be in any significant amount of pain. In between all her evaluations and treatments we’ve been reading to her, playing music and watching videos. Cousin Erin is visiting with us as I write this and we’re expecting Uncle Rob to stop by later this evening.

Thanks as always for keeping us in your thoughts.


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Weekend adventures

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Best Mommy EVER!


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Elie’s favorite Dr Seuss character? Sylvester McMonkey McBean, of course.

Now that the bi-pap is off and Elie is breathing well, we can be transferred to a regular room. However, none are available, so likely one more night in the PICU. The feedings via the G-tube have begun. First Enfalyte, then formula. If all continues to go according to plan, with any luck we’ll be home tomorrow.

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Amount Due: $16.80

Another stack of medical bills arrived in the mail yesterday. We’re lucky to have good insurance. Among them were the charges for the genetics testing that confirmed we’re SMA carriers.

The cost to us was $16.80 each ($33.60 total). At the risk of sounding like a broken record (remember those?) – or the NPR pledge drive – if you’re thinking of having children, or having more children, again please ask your doctor for the test. On our bills it was labeled “SMN1 Copy Number Analysis” should your healthcare provider need a better description.

Around 1 in 40 are carriers, and if you’re related to us, those odds are even greater that you too are carriers. It is better to know your risks and options, even if it is only to let your children know they too might be carriers. While your cost may be higher, please don’t let that affect your decision.

And now, a picture you may remember from high school biology class. I’m the one on the left.


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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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Tangerine Basil flavor from the King of Pops. Sweet and spicy with a touch of Antarctica.

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In the first days after Elie was born, I’d awaken in the early morning hours and make my way half asleep into her room. Guided only by her nightlight, I’d place my hand on her stomach, the exaggerated but rhythmic elevations of her abdominal breathing serving to comfort and reassure me. There’s a medical term for this. It is not normal. It’s one of the first things the doctors look for when they suspect SMA as the diaphragm overcompensates for the weakness in the chest wall muscles. We didn’t know. She is the only baby we’ve known. But it provided us with another nickname, Elie Belly, or just Belly. What was once a source of amusement has now become an area of intense focus and concern. Over time her ability to breathe will decline. We know this. For now we watch and we wait.

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