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, January 22, 2012

Alice day 5--Natalie day 32

Evie's Room...or the Shower.
Alice's Room

Our Pantry

Alice's Princess Dress Wall and Toys

A Nurse Posted Little Fish On Her Door

And Big Fish On Natalie's Door

Tyler Determined To Solve It

Natalie's Room
Just Chatting
Hanging Out In Natalie's Room

Natalie seemed bright and happy when we arrived back to the hospital today. She was so anxious to teach me a new game called Sleeping Queens--Aunt Karina taught her how to play. It is a fun game, she loves it.
Her ANC is 1200 today. She is doing super well. When talking to her Grandmother, she said, "I feel like something inside of me wants to go home."

Alice is still happy and gentle--becoming more uncomfortable. Today she had a low grade fever, however, because she is on steroids it is hard to say exactly what temperature her fever was. Steroids can mask a fever.

She is also having some difficulties breathing, which is troubling. She had an x-ray today to make sure her lungs were fine. The x-ray looked fine. I have seen this very thing with her before and I have my suspicions as to what is happening. Although it doesn't make much sense to the doctors (my idea) I still think it needs to be considered. I have learned over the years with our girls that nothing makes sense in a text book fashion. They are just different, and it's difficult to diagnose anything. Tomorrow should bring new information.

I took some pictures of the girls rooms, maybe Natalie will recognize it later. After all it's been a big part of their lives.

I have been trying to explain to Natalie that even though she is getting better and will be a healthier girl now, she may have 1 or 2 hospital stays during the first 100 days to a year post-transplant, if a fever occurs. Most kids after transplant have at least one hospital stay--ideally we don't want any, but I thought I would at least explain things to her.

Lisy
Posted by at 10:51 PM

2 comments:

  1. AnonymousJanuary 23, 2012 at 9:16 AM

    Loved this update, with the glimpse into their rooms. Keep on rocking, Fish Family! XO

    ReplyDelete
  2. jeriJanuary 23, 2012 at 1:37 PM

    Natalie,
    You are probably so tired of seeing this room right now, but when you are older, I think you will be glad to be able to remember this experience.

    When I was almost your age (I was 7-and-a-half) I had surgery on my heart. I was in the ICU and then a regular room at Primary Children's for a few weeks. I don't remember it at all. I wish that my mom had journaled the experience or taken any pictures. It seems like forever in the future, but one day you are going to be a grown-up lady with grown-up problems (like wondering why the dryer eats everyone's left sock) and you will be able to look back and see all the struggles you and Alice have overcome, the amazing way your family has come together to support one another and the way the Lord has lifted you and given you strength. You are an amazing young lady and we are proud of you and pray for you every single day. We love you all!

    Sis. Huish

    ReplyDelete

Subscribe to: Post Comments (Atom)