Thursday, February 24, 2011

A day at CHOP ~ Children's Hospital of Philadelphia

Our fears confirmed...
           ....but not all gloom!

    The two previous EEGs did NOT show Infantile Spasms (I.S.), even though they showed a lot of abnormal brain activity.   However, Ema's first EEG at CHOP showed that Emaline DOES have Infantile Spasms. 
     Our first research on the spasms was pretty devastating news but doctors have been encouraging and we've learned they are not as bad as we first thought.  If the spasms can be stopped, Ema will be able to progress and develop much more easily.  Her motor skills have been affected so each week the therapist works on new exercises for her.

     She has started some intense steroid treatment which has some pretty tough side effects.  If you are familiar with know!!

     The Infantile Spasms are a result of the stroke she had before she was born. At her young age though, the rest of the brain should be able to compensate, and development will take place. She has been and will continue much therapy to work on damage from the stroke and the Torticollis which she also has.

This is a sample picture of a normal EEG for a baby:

Normal Awake EEG

Here is a sample EEG of a baby with Infantile Spasms.

To me, it looks like this should cause headaches.
I'm amazed she can do what she is able to do!

On a happy note....
Ema gets to see her Aunt Amy who traveled
from CT to Philly.

Sleepy little sweet pea!
Love these girls!
Ema looks so little to have so many problems.


First appointment at CHOP~
A long day ahead...

Riding the train to the hospital.

She managed a beautiful little smile even though she was feeling very perky.
What a sweetheart!

the Hospital

One MAJOR blessing is Ema's Grandma & Grandpa Martin live in Philadelphia
so Rick, Melanie & Emaline are staying with them.
Thankful for that!!

W A I T I N G for the EEG
Sound asleep in Daddy's arms.

Precious family!!

Four hours later....
up at 6:30 a.m.
no real nap





What a strong little baby!
Blessed by so much love and prayers of people all over the world!
Thank you!

"Call unto me, and I will answer thee, and show thee
great and mighty things, which thou knowest not."
Jeremiah 33:3

1 comment:

  1. I love that verse, such a sweet reminder of His grace and love and a promise of great things ahead for Ema!...Can't wait to meet your sweet little Ema and see Rick and Mel and Amy too on Sat. It doesn't seem right that you aren't here! What would we do without FB, Skype and the internet? It melts the miles away.