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.

Friday, April 5, 2013

Broken Bone

 Sadly, little Alice broke her arm yesterday evening.  Both bones of the forearm, the radius and the ulna, are fractured, the radius more than the ulna.  Thankfully the break is well aligned, and should heal nicely.

Tyler and I did not see the accident, but assume she tripped.  This type of fracture is typically caused by falling onto the outstretched hand.  We were just getting ready to go in the car, I was grabbing the diaper bag, while Evie and Alice were in the garage beside the car when we heard Alice scream.  We assume Alice tripped over Evie because she was lying on the ground next to her, while Evie had a pair of Blair's snow boots on.  These two little girls can be clumsy together, especially trying to get somewhere.  Natalie and Blair were sitting near by and neither one saw it happen.  Later I asked Alice how she fell down.  She said, "I just fell all by myself".

Truly it doesn't take much for her to injure herself.  Her bones are so weak and fragile.  We have been trying hard to add more calcium to her diet.  She can't have too much dairy for other purposes, and she has no interest in tums or other supplements.  She gets plenty of vitamin D, but not enough calcium.  The dietitian is working on a good liquid calcium supplement for Alice.

If you were to see Alice, she does not look good.  Her body is covered in bruises and Petechiae (Small red spots under the skin where the tiny blood vessels bleed out---because the blood does not clot)  All this is due to low platelets.  Monday she will receive more platelets.  Everything on her is tender.

Pictures hardly show it many tender bruises.

Little tiny bumps into furniture, etc. turn into this kind of bruise...the red spots are the petechiae.

Petechiae everywhere.

Last time it was her right leg, now her right arm.

This morning Tyler told me as I was taking Alice in for an x-ray to the American Fork hospital at 3:00 a.m. that they might call child services on us because of how bruised she looks, of course he was mostly guesting.

We knew the nurse and have been seen by the doctor on other occasions,  they were very sweet, quick, and careful with her immune compromised state.  I called ahead and they prepared for our arrival.  The next week or two for Alice will be hard as her bone begins to heal.  We wish we could take it all away...poor little Alice.

At American Fork ER waiting for x-ray.

Natalie had a visit with neurology yesterday.  It was fast and simple, we just reviewed her seizure medication (Keppra).  Once we return we might try a different medication that has less "irritability" side effects.  We didn't want to change it now and trial it while out of town...sometimes the process of switching to another therapeutic type of medication takes a few weeks.

I have a post coming up soon of something fun and new that Natalie has been working well as Matthew and Blair.  They are so proud of themselves.  I will try to post that soon.


1 comment:

  1. I'm a new follower but your story has touched me personally. I can only imagine how hard it is what your going through with your girls. These pictures above break my heart. But stay strong & I hope things start to look up for Alice. :) have a fun trip to Hawaii