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 15, 2015

Growth Hormone

Okay so when I mentioned in the last post that everybody is healthy, I meant that we aren't dying. We have regular things going on here with fevers and ear aches.  However, we consider that sufficiently healthy, but now I suppose I ought to mention that Alice has been the least affected by the passing bugs.  Wahoooo!

Nut Shell Update

Alice started growth hormone, at first it made her nauseas but we lowered the dose for a week and that helped.  She is now up to her prescribe dose.  In a few months we'll see if it works.  Every inch will help.  She is a champ with the injection.  She reminds us when she needs her shot and she chooses where to take the poke.  Wow, Alice is so amazing, her attitude is unreal.  Thank Heaven!!

Natalie's main struggle is finding a balance between a reoccurring sinus infection, fever, cough-and the effects it has on her neuro status.  Her seizure threshold is always compromised when illness is on board, she's had a rash of mini seizures (feel funnies) lately.  Why the reoccurring sinus infection?  Not sure.  We do know that when on an antibiotic the symptoms alleviate, but persistently return approx. two weeks post antibiotic treatment.  Possibly there is a hidden pocket of bacteria in her sinuses and the structure of her sinuses make it hard for the germs and mucous to drain and for the prolonged courses of antibiotic to reach it.  My mind is full of plenty of theories, but it makes me dizzy to think of writing them all down.

We are trying many non abrasive things, such as nasal washes (when Natalie permits), nasal inhalers, singular and probiotics.  Something about her sinuses that haven't worked properly from the beginning, even aside from SCID.

That's it for now, sorry there are no pictures or videos, I have plenty I want to post but they take will come.  Tyler has Alice's wish video ready to post (hopefully tomorrow).


The rest of this post is boring, but I included it for my records.

March 2nd

Alice went to BMT clinic.  Labs are still good.  Hemoglobin 12.5, Platelets 234.  She is not required to return for two months.  This is super good.
The other day Alice mentioned something about her central line...It seems so long since she had it, I can't believe it has been six months.
We haven't heard word from her second donor, but hope to learn who he is in due time.

Natalie also had a clinic visit today with ENT.  The discussion was similar to that of the time before and the time before that.  Her sinuses are a challenge as I have mentioned already.

February 14th

Happy Birthday Tyler!  Alice started growth hormone yesterday.  She was scared of the needle but once she saw how little it was she found some bravery to proceed and she did an awesome job.

February 2nd

BMT clinic for Alice, she is becoming a pro at blood draws.  Counts are good.  Hemoglobin 10.9. Retic is 3.58, slightly high.

She is all ready for her wish trip in two days.  The doctors have given the green light to travel.

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