New member to CHARGE List

[Guest guest]

Hello Everyone, I am a mother of a delightful 6 year old girl, Sara, with all

CHARGE features ; and then some of course. I am no stranger to CHARGE but am a

complete novice when it comes to computers so please forgive any major breaches

in protocol. (Thanks Betsy from DBLink in getting me here.)

Just a brief history about us. My husband and I are both nurses and I first met

Sara when she was 12 mons. old, an inpatient in the unit I was training on. Her

big brown eyes looked at me and I was GONE. Tom and I brought Sara home as a

foster child at age 26 mos. A task in itself! . A year ago last Sept. (1998)

I gave birth to our daughter . On June 23 of this year our adoption of

Sara was complete and our family is " officially " whole.

Sara has a trach & MicKey G-tube since 5mons. old. She has bilateral moderate

to severe hearing loss with relatively functional vision. Her communication

style I would describe as sometimes complex informal: and of course on her

terms! We are very lucky to have a FABULOUS support system in place for her.

She goes to Perkins Deafblind Program in Massachusetts. We live just 10 minutes

away by design. We have private duty nurses who are truly devoted to her: all

with her at least 2 years. Her PMD is a GENETICIST and is the absolute BEST!

And last but not least, Sara and have connected in a way I never dreamed

.. But do We still need help? Have questions? Seek advice and support? You

bet!!!!! That's why we're looking forward to using the CHARGE List. Thanks.

Anne. P.S. Tom and I attended the last 2 conferences. Sara did not come to

Texas.