[tri-med] Re: ABR and Craniosynostosis

Erin,

>We got some good news recently-they have declared Charlotte's 
>heart structurally normal! She does have some pulmonary 
>hypertension but not too bad.

Did they offer an opinion as to why she has some pulmonary 
hypertension if her heart is structurally normal?  Are they planning
on keeping an eye on it?

>They have decided to do a surgery in February on her head-turns 
>out the metopic suture closed early during my pregnancy and so 
>her forehead is pointed. They said if we don't go in and release 
>the suture pressure could build up in her head, etc.  Has anyone 
>else been through this? 

Only as far as the diagnostic x-ray.  While Philina's had closed early,
it hadn't actually sealed, so she didn't need the surgery after all.

>Charlotte also failed four OAE test for her hearing and is having an 
>ABR this week.  Anyone been through this? What could they possibly 
>find out that could help her?  Is a hearing aid a possbiltiy? What have 
>other people done?

Philina has worn hearing aids since she was 2 1/2.  And what a 
documented hearing loss can get you, is a school label of Deaf, Hard 
of Hearing, Multi-handicapped (DHH-Multi).  And that is a very coveted 
label, indeed.  It guarantees that the school district will have to work 
on communication skills for Charlott.  Otherwise they could label her
Severely Handicapped (SH) - Non Verbal, and say she's just not capable 
of learning.  Philina communicates pretty well.  She has a few verbal 
words, hundreds of American Sign Language signs, and has also used 
both a communication device and a pec symbols communication wallet 
in the past.


Fawna, mom to Philina 21 yrs (PT6p & Moya Moya Syndrome)
http://home.mindspring.com/~fawna33/
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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