Thanks from Jillie's Mom.

[Guest guest]

Hi all!

Thanks so much for writing in with your words of support over the

past few days when I truly felt overwhelmed. I feel better because of

your support and because I actually slept for more than 3 hrs in a

row - wonders will never cease!! Everything is always so much worse

when sleep deprived and getting ready to go into work on a cold yucky

night.

As regards learning sign language, I've bought books, DVD's and

computer programs for us at the house and a book for her speech

therapist who does not currently know many signs at all. Her class

teacher knows the basics. Jillie recognizes the entire sign alphabet,

numbers up to 10 and at least another 50 + signs. I know many nouns

(? 150) but am having a hard time figuring out how to put it into

sentence structure - especially for a hearing child. She is beyond

the baby 1 to 2 words. She needs to tell me about events, how she

feels, what hurts, who she likes etc.. The SPED director is going to

find a teacher for the family so Jillie can progress beyond my

limitations. Jillie's brother is excited about having a secret

language to learn and picks it up so fast. I'm daunted and my husband

just shakes his head. He'd much rather focus on the picture

communication symbols.

Jillie tunefully sings great but with awful pronunciation. Her

repertoire has got to be 20+ songs/tunes. You know what she is

singing because she truly carries a tune but can't make out the words.

The reason she needs to wait for surgery is her anatomically screwed

up airway. If she gets it too early, it will make make her airway

issues worse, condemning her to a tracheostomy or worse. Dr H and her

craniofacial team all agreed strongly about this. They all also

concur she may never be a candidate for the surgery.

I'm still a NICU nurse by the way - work every Friday and Saturday

night just so I can be at home all week to deal with appointments and

school etc.

Thanks , Dawna, Jodi Z, Jodi R, Marcy, , ,

and " advocate22003 " (sorry I didn't catch your name as you

signed your post H - I'm sure I know you though!!) for writing back.

Hopefully in the near future I'll have time to help people on board

regularly. Always know anyone can contact me anytime for anything I

might be able to help you with. I've been an RN for 20 years - 5 in

pediatrics and 15 in neonatology. If I don't know an answer, I sure

might be able to find it out.

Have a great week!