[tri-med] Re: New with questions

 
Welcome again Stephanie and Congratulations!!!!!! 

 Aleah was a terrible terrible child when it came to crying :o( I am so glad
that that portion of her life is done with... she was EXTREMELY colicky, for
the first 4.5months, then started having seizures so we did ACTH therapy and
after her wean at 8months she seemed so much happier and was not crying
consistantly. However she is definetely full of life LOL, and knows just
whatshe wants :o) I think for us the absolute best thing we did with Aleah
for the crying other then holding her almost 24 hours a day and bounce
walking was get her adjusted at the chiropractor.... it helped with her
nightcrying, and her over all fussyness, I also had a healing touch session
done (which I was totally sceptical of) and honestly it seemed to help, also
I didnt have headaches and joint pain for almost 2months after our session.
something to look into when your on your wits end with the crying, it cant
hurt. 

  Also I spoke to a well known nuerologist in regards to the seizures Aleah
has had in the past and he said that the particular form shes had is common
with 14's, not to worry you but if you have to cross that bridge I am more
then happy to give you all the info we have and doctors, ect. 

  So do you have any pictures posted anywhere of Ryan, I would love to see
him. CONGRATS again. 

 Rachael mom to Jeremiah and Aleah dx Infantile Spasms resolved, focal
partial seizures and partial trisomy 14




Rachael Larson>From: BowdenCnS@xxxxxxx >Reply-To: tri-med@xxxxxxxxxxxxx
>To: tri-med@xxxxxxxxxxxxx >Subject: [tri-med] New with questions >Date:
Mon,29 Nov 2004 16:43:49 EST >>Hi everyone, >I'm kind of new here. I posted
months ago about our son's prenatal diagnosis >of trisomy 14. I sort of just
lurked and then decided to just tune out until >our little guy got here. We
weren't sure of what to expect since three >doctors were telling us that our
baby wasn't going to survive long after birth. We >expected the worst
becausethe ultrasounds showed that our son was missing a >large portion of
his brain, mainly the cerebellum area, and he wasn't developing >normally.
Ryan came into the world on October 17th. We had trouble breathing >at first
so they put him on a vent and was taken to the NICU. He was off the >vent
thenext day, breathing on his own, and so began this new journey into the
>unknown. (Ryan is our second child born with a chromosome anomaly; we lost
>our first son at 20 months old, 4 years ago). >>Ryan has a partial trisomy
14, and from all the research I've done I can't >seem to find anyone who has
quite as large duplication as he has. His >duplication starts from the top
atp13 and ends at q 31.1. I don't know how valid this >is but our geneticist
and several others have told us that they don't know of >any child who has
survived very long with this type of trisomy. I know they >all say that, but
I can't seem to find anyone who has a similar duplication. So >far, despite
it all, Ryan is doing relatively well. The biggest problem he has >is a
largecyst on his brain that started in utero. It caused a large part of >his
brain to not develop. The MRI's paint a complicated picture of what is >and
isn't there, so we won't know for sure how this is going to affect Ryan
>until further down the road. The neuro has mentioned Dandy-Walker syndrome,
but >he's not sure if that's what it is or not. Either way, Ryan might have
to have >shunts in the future, but we'll cross that bridge when we get
there.>>Physically Ryan has: very small mandible/jaw, very small eyes,
possible >blindness in one eye, poor vision in the other, low set ears,
possible hearing loss >(he failed three tests in the nursery, a more
detailedtest is in the near >future), low birth weight (4.11 oz, but
currently in the 5lb range), bilateral >clubbed feet for which he is being
casted weekly, large fontanelles, very small >genitals, and an ultrasound
couldn't locate his testicals. He had to have a >g-tube placed because of
hispoor suck and swallow, possibly due to an >incomplete cleft palate.
>>Despite all of this, Ryan is a beautiful child. At first glance it's hard
to >even tell that anything is even wrong. He makes the cutest expressions!
He is >a very fussy baby though, and is on medication to help with his
prolonged >crying and agitation, although it doesn't seem to be helping
much.He seems to be >aware of what's going on around him. We are in awe of
him, especially since in >theory he "isn't supposed to be here". We totally
love this little guy and >even though the future is uncertain, we know he's
ablessing to our family. I >don't have any more time to write (he's crying!)
but I just wanted to introduce >ourselves and our newest little angel.
>>Stephanie >>>Building ___ooOOoo__ Rainbows >www.trisomyonline.org
>FamiliesHelping Families On-line >

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