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.

Saturday, June 28, 2014

We're Still Here

It has been 18 days since our last post...time to catch up!

Thankfully, we are happy to report that from a health standpoint things have been fairly calm around here. Natalie, Matthew and Blair spent a week at Camp Hobe'....nothing but good came from their time at the camp.  We were so nervous to send them and worried it would be too long, or that someone would get sick or homesick.  This was an amazing experience for Natalie to be immersed socially, and to meet other children with similar challenges.  She even met a few other kids with Celiac.  Matthew and Blair equally had a blast.  We look forward to attending again next year.

Some days ago we took Blair to the doctor because of fevers and a cough.  He has walking pneumonia.  Poor guy.  He is taking some antibiotics and is feeling much better.  His fevers have subsided, thankfully and his cough is minimal.  He should be back to himself in no time.  It was strange to see him pass up the opportunity to go swimming because he was too tired.  Truly one of his biggest symptoms was just plain ole tired.  He could hardly get himself off the couch.  After 10 days of this, we decided it was time to have him see the doctor.  For a while I was worried he may have contracted West Nile virus, as he was bit by several mosquitoes...the symptoms are similar.  Glad to see him feeling better.

Alice has been to Clinic three times and the Orthopedic since we posted last.  Quick summary; Her leg is great, she no longer needs the walking boot...still caution is required when outside, etc.

Clinic visits have been simple, her counts are recovering from the blood type switch over (if that is what her trouble was).  She has slowly pulled her hemoglobin up on her own.  As you can see below, all her counts have improved...ANC still strong.

Counts on June 27th:                      Counts on June 11th:
ANC 3000                                     ANC 2900
Platelets 180                                   Platelets 158
Hemoglobin 10.7                            Hemoglobin 9.5
Retic 2.6                                         Retic 4.69 (Normal Range .5-1.5)

Lisy




Camp HOBE' 2014
Last Day, final gathering.

Matthew with his counselors

Alice went along for the ride.

Natalie's group

Nurse Heather

Natalie and counselors


New Friends.

Located in Tooele

Love this picture...The medicine pick-up station.  Only at Camp Hobe can you drop off your children and know that they are getting their medicine and being well cared for by doctors and nurses.  When we dropped off Natalie's list of medicines, it was so simple because the nurses deal with this stuff daily and knew just what to do.



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