Wednesday, March 25, 2009

We got some good news the other day....Emerson's final genetic test came back to reveal that her Hypertrophic Cardiomyopathy is not a primary heart condition and is more than likely caused by her Williams Syndrome. This is good news because most of the WS children tend to outgrow their heart problems. YAY!!! So excited about that.

She is getting back into her old routine of only sleeping 3-4 hours at nights, so that's been fun. She wakes up several times coughing and gagging, most likely from her reflux. Her Occupational Therapist, Holly, is going with us to our next appointment with Dr. Escobar, her geneticist, to suggest some tests that she feel could help eliminate some ideas about what is keeping Emerson up at night. We will hopefully get a sleep study to make sure that she isn't having any apnea, or worse, any seizures. We are also going to talk to her doctor about putting Emmy on melatonin, so she can sleep at night...mommy is a bit worn out! Also, I can see such a big improvement in her when she sleeps!

Nothing else really going on...Emerson is continuing with her First Steps. She absolutely hates it, but we are seeing strides!

1 comment:

  1. hi there, just wanted to introduce myself. i'm camille and my son connor, 3.5 has WS. i wanted to invite you to my blog but it's private so i need your email address. can you send me your email address to ?

    by the way, emerson october is an AWESOME name. i love it.


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