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.

Thursday, February 23, 2012

PICU update

Alice has improved greatly over the past 32 hours. Her status has stabilized enough she may return to the ICS today.

The MRI came back normal, the CT scan was normal. We are so happy to hear that. She will have a EEG done soon. Alice has lost the strength to hold her head up, but the doctors feel that will improve over time.

She is communicating better, and now that the effects of the Ativan have worn off we can see a better picture of what her current status is.

Alice couldn't communicate normally after her seizure, but just a couple hours ago she said some things that made me feel so happy and relieved. She said, "Mom, scratch my back", "Mom, rub my feet", and "Mom bite my muffin!" Phew!!

The other day she ordered a muffin from the cafeteria. I tried to get her to eat it, she wouldn't and didn't want it so I just popped it into my mouth not even thinking much of it. She didn't like that--she told everyone for the next two days..."Mom bite my muffin!" You can imagine how I felt when she told the PICU nurse today that I bit her muffin, I was so glad to hear that she was coming back to herself and remembered something.

Alice vomited a lot recently, it soaked her favorite fishy blanket. She was hot when I tried to take it away to wash. She insisted on using it regardless it's condition.

A PICU doctor mentioned that she may have some delirium with all that is going on. We will take her to the window when we get back to our room and help her orientate herself again.

Yesterday her ANC was actually 400--big news, however, they don't know how accurate it was because of all that was going on with her body. Well today it was 600--even bigger news. We hope it is accurate.

Thanks to all who have been praying for her...she is doing MUCH better. I will post again tonight after the EEG comes back and we are back in our Valentine Wonderland room upstairs.


  1. I'm so relieved to read that! I kept thinking about Alice, and all your family, all the time since I read she was in the PICU. Still praying for you... Big kisses to everyone!

  2. What wonderful news! I'm crossing my fingers that her numbers stay up. Keep your spirits up. We're all rooting for Team Fish!

  3. I can't tell you how many times I have checked for your update. Alice has not left my mind for days! I am SOOO glad she is stable and doing better...praying that ANC continues to go up! Congrats

  4. This news brings joy to our hearts! Thank you for the update. You, Alice & your entire family have been on our minds and in our prayers constantly lately. We love you all and hope those ANC #'s keep climbing to where they need to be. Xoxo

  5. I heard of your story from another blog about a month ago and have been following you every since. It broke my heart to read your post yesterday. I shared your story all over facebook to get the prayers spread wider!! I am in Kansas so I know there will be many more prayers from my way!! So very happy to hear of the news today! Hang in there, we are all pulling for your girls!!

  6. This brought tears to my eyes. I will continue to pray for good news! Love to all of your family.