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.

Tuesday, January 29, 2013

Shingles and ENT

I haven't had much of a chance to post.  This will be fast.  Saturday night we noticed a strange rash along Natalie's torso.  She complained that her back was hurting.  It didn't seem like her usual hives.  Amber was visiting and suggested that maybe it was shingles.  I instantly realized that it had to be just that.  Her back pain was very similar to Matthew's when he had shingles.  We called the doctor and they asked us to bring her in Sunday morning. 

Thankfully they only needed to see the rash and prescribe the proper medications.  We stayed only half a day in an ICS room....our fastest stay ever.  Natalie was content to watch movies and play I SPY until the medications were ready.  

She is taking Valacyclovir (anti-viral) to help clear the rash.  It has been quite painful for her; however, some Tylenol is helping take the edge off.  She continues to fever off and on.  

 The air has been so terrible lately; it causes asthma flares with Natalie, in which she requires oxygen at night once again. She is not fond of the blow by, and especially the nasal cannula.  Tyler gently set her down and explained to her why it is important that her lungs get the proper amount of oxygen.  Saturation levels below 90 can over time damage the heart.  Natalie likes to hang around 81 with no assistance.  One night I sat by her bed for good portions of the night to make sure she kept the blow by near her face.  It was exhausting, so we decided we just need to keep the monitor on her and hopefully she will get used to hearing it alarm and roll back closer to the oxygen source.  There is just absolutely no easy way to do it.

On Monday Natalie had a visit with the ENT and the Audiologist.  Natalie's right ear never healed from her surgery in September when they removed the tube.  Still remains a hole in her eardrum.  The ENT presumes this hole is largely affecting her hearing.  He suggests once it is patched, there is a chance some of her hearing will be restored and she may be able to avoid needing hearing aids.  That would be great.

She is scheduled to have surgery the end of February; the ear patch has a 90% success rate and should take approximately two months to heal.  We hope all the statistics fall in Natalie's favor.  We have yet to explain to her what will take place.  She will be devastated to learn that she needs surgery.  For her, it's always one more thing.  She continues to ask, when am I done?  Many of her questions have no answers...we remind her that she has come very far and will continue to improve.

Alice is well enough, her tummy hurts and the diarrhea continues.  She has an appointment tomorrow with bone marrow.  We hope her counts are better than last week.  She is so patient.  I have no idea how a three year old can be so patient.  I often wonder if she is far beyond her years...just stuck in a little sick body.  The way she reasons and communicates is abnormal for her age.  She understands more than even some adults.  I suppose she was given this gift knowing her situation would require it.  Words cannot express what a tender mercy this is for Tyler and I.  Things can always be worse...we are thankful for the blessings we have and the little things that make a big difference.


There is a smile...I love Natalie's smiles.
Banana Smile.

Flight of the Navigator.

Natalie loved this show.

Her favorite channel on TV, the tranquil channel.


  1. Oh my! I would wait as long as you can to tell Natalie about the isn't fun I will be honest. She will wake up with a big "cup" thing over her ear which will be wrapped around her head. She will have to keep it on for 24 was a miserable 24 hours around our house ;). Emily laid around for about a week before feeling more like herself...I hope it does the trick. What a huge blessing it would be to have her hearing come back on it's own! We are praying for all of you EVERY. SINGLE. DAY!

  2. You have a lovely family. I love that despite your girls’ conditions, you have been strong all throughout. I believe that they get their strength from you as well. You are blessed to have such wise and understanding daughters. I hope that Alice feels better already and that Natalie doesn’t need to have hearing aids after her ear surgery.

    Kelsi Macias