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a little about May

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May is 5 yrs old. She was diagnosed at birth. May has choanal

atresia, ear abnormalies with a mild hearing loss, microcelepy(small

head), small mandible(chin), malformation of her soft palate( it is

short and does not move or vibrate with speech), malformation of her

brain, one side in one lobe is thicker than the rest causing

epilepsy, which is for themost part under control with meds, she has

developmental delays in alot of areas but is progressing. She

receives alot of therepy and is in a self contained kindergaten

class. She has had many surgeries attempting to repair a chonal

atresia with little success. her next surgery will be in Feb. They

will attempt another c. a. repair, try again to fix her deviated

septum and do a pheringal flap to try help her speech, she is

hypernasal and very difficult to understand she also does a glottle

stop which means she stops or makes sounds from her throat. We were

very lucky in that Mays heart is fine. Her brother is going to be 7

next week he has down syndrome and aside from his other problems his

heart is fine as well, he has an insignificant heart mumur. If any

one has info on pheringal flap i would greatly appreciate your

input. cris

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hi Cris

welcome!

i know that children with cleft palates sometimes go this step and need the

p-flap procedure ... i wonder if you had thought of accessing a cleft email

list too with any questions? i don't presently belong to any cleft

listserves ... too many other things to learn about at this stage ;0) ...

but, have in the past belonged to both " widesmiles " and " cleft advocate " ...

maybe you could join and search their archives also? just another avenue of

potential info...

hth

Jo

ds Ben, ds Josh CHaRGE uclbcp

----- Original Message -----

.. If any

> one has info on pheringal flap i would greatly appreciate your

> input

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