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.

Sunday, March 4, 2012

Establishing a Routine

Now that we are home; we are finding out there is still an adjustment period required to get back into what we would call a normal routine. It really does feel different when I realize that we do not need to figure out logistics of going back and forth between the hospital and home each day. Now it is a matter of staying on top of the medicine schedules for both Natalie and Alice. Also we have to keep a very detailed record of everything Alice eats and drinks to the ounce. Alice is required to take several different types of medicine throughout the day and night. Natalie is down to around five. Lisy and I tag team it the best we can though out the night. We utilize both cell phone alarms to wake us up at different times to switch meds and flush IV lines. Last night I made a minor mistake in not dressing Alice with an overnight diaper, thank goodness for mattress protectors. Both she and Natalie require a 1000/ml of fluid throughout the night. Natalie, of course will get up and go to the bathroom when needed, but Alice....well, she "swamped her canoe". So today we are washing everything. I should have known better. Tomorrow is clinic, where we will take both girls in for a checkup. Hope to have news of more progression tomorrow.

Tyler
Posted by at 7:53 PM

2 comments:

  1. AnnaMarch 5, 2012 at 3:05 PM

    That sounds pretty stressful, but after what you guys have already been through, I think you'll do awesome. I'm so glad that you are all together at last.

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  2. TaraMarch 5, 2012 at 3:24 PM

    We are so grateful for the wonderful things happening with your family. Yay for Alice! She is adorable. How nice to have everyone all together. Is she giggling as much as Natalie did when she got home? I sure hope so. Good luck with your med schedule. That sounds quite crazy. I hope you are getting little bits of sleep in between it all. Good luck. We can't wait to hear more. Love you guys!

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