The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Tuesday, October 2, 2012

Back to ICS

Another day moving forward.  Natalie has improved tremendously today.  Her mental status is coming back more.  The anti seizure medication can cause her to be slightly loopy.  It's called Kepra.  Possibly she will not need to be on this medication too much longer.  We are anxious to see if the Kepra is in fact causing her dizziness and loopiness....not sure if that is a word.

She had an MRI taken today.  They had to sedate her again to accomplish this.  The results have not been clearly stated at this point, although the MRI does indicated sinus congestion...no surprise.  Neurology will explain more tomorrow about their findings.  We do know already that the injury on her brain that occurred during her swine flu intubation three years ago is still prevalent.

The area of the brain where the damage occurred with swine flu is in the back section.  It has affected her memory and ability to process information, which we had noticed three years ago.  It has improved over time and we hope it continues.  We really hope this recent trauma did not increase the existing damage.

Natalie ate food today and loved it.  She ordered a huge meal by request, we let her knowing she would only eat a little.  Her tummy needs to start simple...but her eyes are big.

When we came to ICS it was like coming home ;)  She was happy to be in a familiar setting.  She went straight to the window to find the temple in the city.  I heard her say; "Yep, there it is...I see it!"

We played games and watched National Treasure.  She enjoys American history or anything that has to do with the American flag; she kept asking if the treasure was real.  I started to read the Declaration of Independence to her...she feel asleep.  A little too young still.

I have another couch bed tonight...wahoo!

More news tomorrow and many thanks for the continued messages of encouragement.  We are so lucky to have many amazing people praying for us and cheering for us.


Lisy

stretching as we walked to MRI (about 10 yards)

Just drifted off and ready for MRI

Ready

She was so relaxed afterward and slept for a while

Lunch was welcomed graciously





Posted by at 11:36 PM

4 comments:

  1. UnknownOctober 3, 2012 at 4:33 AM

    charity donations
    I am impressed by the quality of information on this website. There are a lot of good resources here.

    ReplyDelete
  2. DesireeOctober 3, 2012 at 8:52 AM

    Lisy, Just checking up on you and your family. You are so strong on every level! You always have been. You have always been such a great example for me. My kids are asking me why I am crying. It makes me sad to see your kids sick. I saw on FB that Natalie was put in a coma. :( Dang. We are rooting for you!!! Desi

    ReplyDelete
  3. LyndiOctober 3, 2012 at 1:36 PM

    We are praying for you and your precious girls! You are amazing!

    ReplyDelete
  4. jfishmagOctober 4, 2012 at 12:06 AM

    I didn't check your blog for a few days and it looks like so much has happened! I am so glad to see that Natalie is improving!

    ReplyDelete

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