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.

Thursday, August 2, 2012

Happy Birthday Evelyn--Update on Alice

Today Evie turned ONE!!!  Because Alice is still here in the hospital we will wait to celebrate Evie's birthday.  I have yet to find a few more ingredients to make a gluten free chocolate cake for everyone to enjoy.  Of course Evie will not even know the difference and if I do it right the rest of us won't either. ;)

                                                    Here's to the birthday girl!





And this is Evie's invention...this is the way she likes to have a Binky.  It works for us.



As for Alice--she had a great day, with the exception of a few bumps in the road this morning.  She had a couple temper tantrums and was difficult to console.  I tried to make things better and failed at least twice.  The physical therapist came to work with her; I saw this as an opportunity to slip out before I had a temper tantrum myself.  I slipped on my running shoes and headed for the nearby gym.  I decided I was going to run for two miles.  It sounds pathetic, I know; however, right now two miles is a big accomplishment for me ;).  I did it!  It felt great and I was ready to come back and tackle whatever came.

Alice had a normal diaper, YAY!  She has been taken off TPN and Lipids because she is eating plenty.  This is wonderful.   I gave her a lovely bath and pedicure, she enjoyed it.

Lisy 

Posted by at 9:30 PM

4 comments:

  1. StephanieAugust 2, 2012 at 11:31 PM

    Oh, look at that sweet face. Happy birthday Evie! And glad to hear of some improvement for Alice!

    ReplyDelete
  2. Pehrson GangAugust 3, 2012 at 2:29 AM

    I have an amazing chocolate, gluten free cake recipe if you want it. I have made it twice in the last month for two of my children's birthdays!

    ReplyDelete
  3. Pehrson GangAugust 4, 2012 at 9:42 PM

    Send me your email address to jellypehr@aol.com and I will copy the recipe and send it to you rather than type the whole thing up (and so you can have a hard copy because you will CHERISH this recipe for ALL birthday cakes)!

    ReplyDelete

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