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, June 11, 2012

Finding a Rhythm

We love being home, and the kids are happy to be together.  Evie is probably the most happy.  She keeps tight tabs on me throughout the day and night.  This morning Evie woke early about 5:30 a.m.  I pulled her from her crib and we laid next to each other for a few minutes.  I asked Tyler to watch Evie from falling off the bed while I went to change Alice's IV pump.  The moment I pulled away from her she dove at me and clung to me.  In her mind, I may not be back for another week or two each time I leave.  It will only take a few days for that to wear off and she will be more at ease.

It's hard to be away from your baby...maybe harder for Mom than Baby.

Each hospital stay seems to set us back a little for a day or two.  It's always tricky finding a rhythm again after everyone has been apart and without any particular schedule.  However, being stationary in a hospital room for some time does create a fair amount of extra motivation on mine and Tyler's part.   It's a great way to get itching for productivity, of course not until after we have crashed for a day.  Matthew, Blair and Evie had plenty of fun while the girls were in the hospital.  It was good for the boys to be on the go and do things they aren't able to do when Natalie and Alice are home.  Thank you everyone who helped out with the kids.

Natalie is still very tired and weak.  She has eaten well and completely gluten free since Friday evening.  Just today she shared with us that her tummy didn't hurt.  She may feel a little better now, but if she truly has Celiac Disease it can take around four weeks for her small intestine to heal.  We are thankful for the IV nutrition she receives each night...it's making a big difference.  We are anxious to see what the next few weeks bring for Natalie.

Tomorrow is Clinic for Both Natalie and Alice.  We are planning to have a confirmatory Celiac blood test done on Natalie.

Both girls are tapering on their anti rejection medication.  I sometimes wonder if Natalie's stomach will feel better when medications are no longer a part of her diet.  It is SO SO SO exciting to imagine the girls medication free.  That won't happen for a while, but it's fun to think about.

Lisy


Posted by at 1:05 PM

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