Her Rare Life

Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife

Friday, May 14, 2010

Beach!

We made it!!!
Sent from my Verizon Wireless BlackBerry

We made it!

Sent from my Verizon Wireless BlackBerry

Thursday, May 13, 2010

Hibiscus Flowers on DAFOs

The Henry's Family....Sadie has the same hibiscus flowers on her dafos!!!
Sent from my Verizon Wireless BlackBerry

Wednesday, May 12, 2010

Ortho update

I'm making this short and sweet because I'm exhausted. We saw the orthopedic surgeon yesterday for Sadie's annual checkup. He said her feet look good, but she is still toeing-in. He recommended tibia torsion surgery, where the tibia is cut and then turned, and reattached so the foot is turned out or straight. She would then be in casts for 6 weeks....sounds like ZERO fun...for me or her...for right now...i say NO.

Saturday, May 8, 2010

Several postings ago

I would like to say for the record that I don't agree with the doctor that said Sadie was experiencing the terrible 2s....She didn't feel good and had the beginning symptoms of a sinus infection. She probably had a headache...anyway, she ended up being on back to back antibiotics 5 days after that appointment and a runny nose 1 day after that appointment. AND she is now on allegra for allergies.