(Update) Emmy with Brain Atrophy!

[Ohio_Mommy87]

I'm sorry it took so long for this update. Life has just been insane.

We finally got some information on what Emmy's Brain Atrophy is, and what it's doing to her. Her Brain Atrophy is Shrinkage of the Brain, Usually it's in one spot. But Emmy's is Global, meaning her whole brain has shrank a little. Her doctor said the good news is, It can't get any worse than it already is, and We don't need to worry about her, unless she has stopped making progress, or goes behind and stops doing something she has already learned. She is 14 months old now, and just learned to wave bye bye at people, and can now sit up without support. She's learned to feed herself and how to pick up toys. She hasn't learned to crawl, but hey one miracle at a time, lol.

We got the papers in the mail today, for her to start going to a Early Development MRDD School. A teacher there has actually been coming to the house, and helping Emmy. She sits on the floor with her for hours, and plays, and teaches Emmy one on one things. She just recently taught Emily how to roll from back to stomach.

Like I said, things are getting alot better. I've come to understand Brain Atrophy and how it works, and Emily will be okay. It will just take a while for her to learn things that other children have.

I'll keep you posted on Emmy.
Oh, and if you want to see a picture of her...

http://i29.tinypic.com/2lw0vgl.jpg

Mommy's little Princess!

[Jac]

Thankyou for sharing Emmy's story - she is beautiful.

[tan32]

What a beautiful little girl.
My DD went all gaga when she saw Emmy's pic.
Keep up the great work .

[monnie]

Oh...she's beautiful!

Wishing you all the very best in your journey...

Sounds like Emmy has made fantastic progress against some tough circumstances.

Take care.

[Ohio_Mommy87]

Emmy made another little improvement today. She started shaking her head No.. Which is amazing, since she used to not move her head at all.

She is having some difficulties. She eats more than any baby I have ever seen, but she only weighs 16 pounds.. She eats all day long, until she gets sick, and then eats more.. Something's definatly wrong..

[monnie]

Hi Shauna

Great to hear about Emmy's latest progress with the head shaking...that's great!

But sorry to hear about the feeding...hope you can get some good advice about it.

Take care!

[kathtea16]

I found your thread while looking for information for my brother. His baby is 11 months old and has been diagnoused with brain atrophy. She can't hold her head up and is on a feeding tube at this point. Can you point me to any resources to help them thru this?

Many thanks,

Kathleen

[joeykp]

I know it has been a long time since you have posted but I was wondering how your daughter is doing now.

My dd is 4 moths old and was diagnosed with extensive brain atrophy at birth. Trying to find information on this is a nightmare and if you have any suggestions of where to look would be great.

Once again I hope that you daughter is doing very well

Joey

[jeca_s]

my son\s also been diagnosed with brain atrophy..how is she now?? i would like to get some answers cause the neurologists wont give us anything... my baby was born at 35 weeks weighting 3.10lbs ... he has severe GERD and intra uterine growth retardation.. he's now 4 months old and weighs only 10 pounds.. he vomits everything.. h e smiles..and cooes.. and puts his fists in his mouth.. he can't keep his head straight it's still wobbly..but he tries to push him self when i hold him by his hands.. he can turn when on belly but not the head he cries and screams.. what should i expect over the next year??? he is also tube fed,..not because he can't suck but because he vomits everything and loses weight.. so we had to intube him to get some results...

[jeca_s]

my son\s also been diagnosed with brain atrophy..how is she now?? i would like to get some answers cause the neurologists wont give us anything... my baby was born at 35 weeks weighting 3.10lbs ... he has severe GERD and intra uterine growth retardation.. he's now 4 months old and weighs only 10 pounds.. he vomits everything.. h e smiles..and cooes.. and puts his fists in his mouth.. he can't keep his head straight it's still wobbly..but he tries to push him self when i hold him by his hands.. he can turn when on belly but not the head he cries and screams.. what should i expect over the next year??? he's also tube fed.. not because he cant suck but because he vomits everything and loses weight.. so we had to intube him to get some results...