1.08.2010

It's always something.

In preperation for starting growth hormones, Lillian had her third sleep study. She failed it. Miserably. And screamed through the first hour of it. I think she had a cold and it caused the study to have a crappy outcome, but oh well... just another doctor appointment (or a few dozen) to add to the calendar.

So her endocrinologist decided to put growth hormones on hold. This is unacceptable for us so we are getting a second and third opinion. This means we'll be taking a trip to Florida to visit with a more experienced doctor, but knowing that Lillian is in the best care is all that matters to us.

Even though she screamed and faught the sleep study, when we got home she had physical therapy and did SO well! The therapist was impressed with her, and I was impressed she was even willing to let the therapist work with her. She's such a good baby.

Tomorrow we're attending the PWS Indiana chapter meeting in Indianapolis. I'm excited to meet the other families and children with PWS. As excited as I am to meet other people in our situation, I'm really nervous too. You never know if something like this is going to make you feel better or worse... Hopefully it makes us feel better.

Since I've been slacking, here are some pics!

Daddy's way of keeping me entertained....

The first man I ever met! (Our Delivery Doctor)

Mommy and I matched for Christmas


Help! Is this really my family?!?



I stayed up way past my bedtime for this.


But slept in the next morning with Daddy



Happy New Year!

2 comments:

  1. I love all the pics and I think you're doing a great job fighting for Lillian. Let us all know how the PWS meeting goes.

    ReplyDelete
  2. Good for you & good luck with the second & third opinions!! She is a beautiful little girl!!

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