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.

Monday, December 10, 2012

Clinic For Alice

Counts remained the same for Alice, ANC is 500.  We did not give her Nulasta.  Honestly, I was surprised and happy to learn that her ANC wasn't lower.  She is now off of Amlodipine (blood pressure med).  Her Cyclosporine dose just tapered another step today.  It's a wonderful thing to drop another medication from the list.  Alice is now currently taking 9 medications, two of them are still given through her line.

Rituximab is still on the back burner for Alice.

Natalie had an awesome day...she stayed home!  She never went to clinic.  Last night she did not fever...Hooray!  We decided to keep her home, which we feel was the right decision.  If the fever returns we will consider the panel of tests she was scheduled to have done today.

Tyler and I feel as though Natalie's hearing has worsened.  We are anxious for her next visit with the ENT.  We hope to find a way to help her hearing.  January will be a busy month for Natalie, she has visits with ENT, Neurology, Pulmonology, and Psychology.

Natalie went to the grocery store with her Grandparents tonight and picked out all her favorite foods.  She came home with oranges, mandarin oranges, bananas, broccoli, cauliflower, chicken legs, apple juice, carrots and Gatorade.  She had been complaining that there was nothing in the house that she liked. 

Tyler and I pulled the kids behind the car today on a sled.  It was a blast.  They loved it.  The snow is beautiful.  We hope the snow stays and that more will come.  Alice kept saying, "Faster, Faster."  When we came home she said my tummy hurts.  I asked if she wanted a pink bucket.  When I looked to the other side of the room where the bucket was, Evie had already grabbed the bucket and was handing it to Alice. 

Evie, you are so sweet.  Not many 16 month old babies are well trained in vomit control.  It's an art around here.  Alice has incredible control to wait for the bucket.  She feels a sense of security with the pink bucket.  Thank goodness for Clorox wipes..it makes sterilizing the pink buckets easier after each use.  I use several wipes a day.

Lisy

p.s. I have lost my phone in the snow somewhere.  I hope it finds it's way back.  Until then, if you need to reach me..call Tyler or email me.  lisyfish@gmail.com
Posted by at 10:26 PM

2 comments:

  1. Jill HeapsDecember 11, 2012 at 7:29 AM

    I have been wanting to ask about Natalie's hearing. IF she needs hearing aids, we have a perfectly good pair that our daughter doesn't use anymore because she just got cochlear implants. I want to offer them to you if your interested. Let me know :)...it will save about $8000.00!

    GOOD LUCK! jill heaps@gmail.com or 801-735-8449

    ReplyDelete
  2. Jill HeapsDecember 11, 2012 at 7:29 AM

    sorry....no space in jill heaps@gmail.com :)

    ReplyDelete

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