In addition to Ariel's pediatrician, she is followed by a Neurologist, Nutritionist, GI Surgeon,
ENT, and an Ophthalmologist. Ariel sees her specialist every 6 months with the exception of her Nutritionist and GI Surgeon.
Those she sees on a need to basis.
Ariel's neurologist follows her development and orders any testing that maybe in order to
find a diagnosis. Thus far, Ariel has had several EEG's (while in the NICU)and three MRI's. Ariel's first
2or 3 EEG's were abnormal, however, her last one performed at Cornell while in the NICU was normal.
Her most recent MRI performed in April of 2003 showed "miminal brain loss". Ariel's
new neurologist at Children's Hospital in Philadelphia is not too concerned with this at the moment. We are told that
a child's brain fully developes in 3 years, therefor, it is too soon to see what the future may hold for Ariel. Her
neuro along with Genetics ordered several bllod tests in October of 2003. They are as follows: RETT Syndrome-Negative
Acylcarnitine-Normal
Glycosylation-Normal
CK-Normal
Ammonia-Normal
Pyruv/Lact-Normal
FISH-Normal
Ariel was also test for Spinal Muscular Atrophy which was Negative.
What this all means is that so far Ariel has tested Normal to everything with the exception
of the brain loss. Will we find an answer to her disability or was it a mishap at conception? That is what we're
trying to find the answer to.
Ariel sees her Nutritionist simply as reasurrance that she is being fed adequately being
that she is tube fed. Her GI surgeon monitors her Mic-Key Button. I am told that I am doing such a good job with
her GI site, that the doctor is going to start sending me patients!
Ariel sees her ENT as a follow up for her tubes that were placed in May of 2003. Prior
to tubes being placed in Ariel's ears she was falling all her hearing test. Fluid was not draining from her ears.
This may have been because Ariel has a weak swallow. Since having her tubes, Ariel has passed her hearing test!
Originally Ariel saw an Ophthalmolgist for a blocked tear duct. This has since corrected
itself, however Ariel does have an outward deviation of alternative eyes. The doctor would like to see if this too will
correct itself, or if not we will discuss the possibilty of "patching" her better eye.
Ariel has had three operations, two having been performed at the same time. In November
of 2002 Ariel had her GI tube placed. In addition to that she also had a muscle biopsy taken. This was normal.
And as stated above, Ariel had tubes placed in her ears in May of 2003.
All in all, Ariel Ariel continues to thrive at home and is making great progress. She
went from a tiny infant who never moved to a healthy, chuncky quite lively little girl. She knows her family and knows
strangers. She knows when it's bedtime and I carry her up to her crib, (she starts to whimper) and she knows how to
bring a smile to everyone's face!
