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Help?? Even just someone to talk to and offer a listening ear?

Posted by on Feb. 1, 2013 at 4:20 PM
  • 20 Replies

I am a mommy to two precious little girls, one is almost three and my youngest just turned 4 months..

My youngest has alot of problems, was born and in the NICU for 2 weeks we almost lost her...
Now she has FTT they think spina bifida, possible slightly autistic and Chairi Malformation.
 
I feel like my mind is on overload and no one seems to understand..
Someone help?? 

by on Feb. 1, 2013 at 4:20 PM
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Replies (1-10):
blessed4918
by on Feb. 1, 2013 at 4:25 PM
1 mom liked this

You onload oh hi I am blessed 4818 on here I have an 19 year old who is in her last year of school my daughter was born with trismony 21 down's syndrome March of 2011 she started with suendo seizures she started with just one a week now some weeks may be 3 boy I have it rough she is having one now no she more then one  now to anyways she wonts to walk that sends me crazy now I moved my computer out here in the dinette but she wonts to walk and eat I am here you need to talk.

ZakkarysMom
by Silver Member on Feb. 1, 2013 at 4:25 PM
1 mom liked this
Oh my. Im sorry. Sounds like she is a fighter though. Whats the malformation if you dont mind me asking? Ive never heard of that.
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BusyMommy21910
by on Feb. 1, 2013 at 4:30 PM

Shes a huge fighter and has been since the begining (:
I dont know too much about it yet all I know is that is part of the reason why she wont eat why she gags and throws up so much and is making her weight issues worse... 

ZakkarysMom
by Silver Member on Feb. 1, 2013 at 4:40 PM
I have seen alot of moms talking about feeding tubes. Have the drs considered that?


Quoting BusyMommy21910:

Shes a huge fighter and has been since the begining (:
I dont know too much about it yet all I know is that is part of the reason why she wont eat why she gags and throws up so much and is making her weight issues worse... 


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BusyMommy21910
by on Feb. 1, 2013 at 4:44 PM

Yes :(

we will be going to a GI doctor soon to discuss it...

dawncs
by Dawn on Feb. 1, 2013 at 4:55 PM

Welcome to the group! You have come to the right place to find support on the internet. There is help out there for you and your daughter. Have you signed her up for early intervention (http://www.wrightslaw.com/) with your school district which is free? You might also find Easter Seals (http://www.easterseals.org/) and Variety Club (http://www.usvariety.org/) very useful. You can learn more about her diagnosis through here: http://www.conquerchiari.org/.

Dawn
Beautifully Talanted Autistic Social Story Author
Diagnosed Asperger Syndrome as an adult
Diagnosed Edema (since young)
Author Page: http://www.toyboxunlimited.com/ (has discounts)

Tay06
by on Feb. 1, 2013 at 5:00 PM

*HUG*  My sister has MR, CP, Epilespy, and Autism, had a heart defect, was tube fed the first two years of her life, and she was born with a double aerotic arch, which means her aeorta was wrapped around her trachae TWICE.  The didn't catch it in time so by the time they did her aeorta had literally been strangling her trachae.  She was the second child to have the surgery done to fix it and the first to survive.  She wasn't supposed to live past two because her trachae and aeorta were damaged, but she was still going... so then five was supposed to be her deadline... then seven, and then they said she would die at 18.  She turns 20 at the end of the month and she has more energy than I do.  :)  Hang in there.  I know it's hard.  Try to join a support group if you have time.  They help.  There are online groups too!

jjamom
by Michele on Feb. 1, 2013 at 5:06 PM
Welcome to the group! We're here for you. We may not have a child with the same issues, but we all know what it's like to feel overwhelmed and alone. Vent, post, ask questions, reply to posts. Just jump right in!
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CameronsMommy23
by on Feb. 1, 2013 at 5:48 PM
Welcome first of all. You can come here to vent anytime! We all feel overloaded at times. But it sounds like you're doing everything you can for your little one. Hang in there!!
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Elyssa414
by Elyssa on Feb. 1, 2013 at 5:52 PM
Welcome!!
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