Scarlett will be TWO-YEARS-OLD next Monday. The countdown is on... When Scarlett was diagnosed with Spinal Muscular Atrophy at 3-months-old we were told to go home and love her. They said we didn't have very much time with her. I immediately started doing research on the internet. I discovered that SMA is the #1 genetic killer of children under the age of 2. Babies diagnosed with SMA type 1 are not expected to live to see their second birthday.
We haven't decided exactly how we are going to celebrate her huge milestone. To be honest, we didn't think we would ever get the opportunity to celebrate it. How do you celebrate something so BIG?
I'm thinking a pink princess party would be perfect for our little princess. My nickname for Scarlett is "Princess." I know it's not very original but she really is a princess. One time when we were in the PICU, the respiratory therapist said "someone needs to fan her and feed her grapes." He was right. She's a princess.
1 comment:
Please tell "Princess" happy birthday from me. She is just beautiful. As always my prayers are with you.
Roberta Ochs, RN
GI Dept. Arizona Medical Clinic
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