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.

Wednesday, June 13, 2012

Clinic--Zumba Fest Postponed

The Zumba Fest has been postponed for a later date...more info to come.

Clinic was great today...only good news.  Counts are up, dropped two more meds from Natalie's list.  Dropped a med from Alice's too.  We love getting rid of a medication, it feels so good.

We should hear back within the week regarding Natalie's Celiac confirmatory test.  In the meantime she is eating plenty of non-gluten foods.

Natalie will no longer need TPN after tonight.  She will still receive magnesium fluid as usual, for another few weeks possibly.

Lisy

The girls enjoy walking through the little garden in front of the the hospital.  I had posted a movie a while ago of the girls making wishes in the west pond but it didn't work so we have added a new one today.










Posted by at 12:41 AM

4 comments:

  1. Jennifer WalshJune 13, 2012 at 3:53 PM

    if the whole family eats Paleo then finding Gluten free meals hopefully wouldn't be so difficult. there are lots of great Paleo books out there. I like Robb Wolff's The Paleo Solution. There are also alot of great cookbooks and blogs. A great bolg (plus you can find them on facebook) is Everyday Paleo

    ReplyDelete
  2. Jill HeapsJune 14, 2012 at 7:11 AM

    SO darling!! I am so glad you can just VISIT PCMC for the moment :) I hope The girls wishes come true! Let me know when your up for a play date... Emily is really looking forward to it!

    ReplyDelete
  3. AnnaJune 14, 2012 at 9:33 AM

    Thanks for sharing all your stories and pictures. The girls and I love knowing how you all are doing. I'm glad you're all home together. I'm glad that the girls have a pond just for them!

    ReplyDelete
  4. Pehrson GangJune 17, 2012 at 12:55 AM

    I am a friend of Cathy Harker and saw your blog. I am hooked and check it very often. Your family is AMAZING and the strength you have in incredible. WOW! I have an 8-year old daughter recently diagnosed with Celiac Disease. I have six children total, so cooking for a large family can be a challenge, but I don't cook different for her. When I cook for the whole family, we all eat gluten-free. When she is eating something (cereal, lunch, snack, ect) she has special non-gluten foods for just her. I live in Alaska so gluten-free foods are even more expensive. FYI, I buy tons of gluten-free foods from Amazon.com with free shipping, more selection than stores, cheaper, and you can get on a regularly deliverd schedule. We are still working on getting her 100% gluten free, but some days are better than others on what she does/doesn't eat. We are also teaching her how to choose foods for herself and reading labels. I am glad the hospital offers a week long class, if Natalie is officially diagnosed. The weird thing is we were told celiac is genetic, but the other seven of us all have tested negative. Good luck. If you have any questions or anything about this here is my email: jellypehr@aol.com. Shelly Pehrson

    ReplyDelete

Subscribe to: Post Comments (Atom)