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.

Friday, November 22, 2013

A Week at Once


Boo Boo the Bear

This is a darling video the hospital produced...they wanted Alice to be a part of it, and were willing to wait for her to get better to come film. Enjoy!





I have fallen behind with posting.  I am not surprised, here at home my time is limited.  While in the hospital I could find more gaps of time to post while Alice was napping or asleep for the night.  I hope to post again once a week, here on out.

So here is what has happened this week.

Monday Nov. 18th (Day 32)--Clinic

ANC 4700, Hemoglobin 10.9, Platelets 123

All things looking up!  The doctors increased her feeds to 15ml/hr.  Her CMV increased slightly, not to worry as we have dropped her Foscarnet to twice a day.  We hope to keep it at twice a day and not three times.  CMV can be a real bugger if it gets out of control.  For Alice her CMV numbers are very manageable.  No infusions needed in clinic.  It was a smooth and fairly fast visit.  Our first visit back to clinic in nearly six weeks; a nurse had pointed this out to us.
Leaving Clinic and she refused to wear pants...it was raining/snowing outside.  Crazy girl.  She at least agreed to let me wrap her blanket around her legs.
She wanted us to notice her hairdo.

Helping Aunt Amberly put up her tree.


That next to the tree is Alice's IV pole.

Helping Dad rake leaves...not really.

Who would have known this 'handy cart' would be so fun.

Tuesday Nov. 18th--Good-Bye NJ tube

Alice said good-bye to her NJ tube today, she was happy to see it go.  Unfortunately we hadn't planned to pull her feeding tube, but it was clogged and we had no choice.  I spent at least a total of 4 hours today trying to unclog her tube.  When we increased the rate of the feeds in clinic yesterday it allowed the feeds to complete before her morning oral medications are scheduled to be given through the tube.  The medications are very sticky and even flushing with the proper amount of water, the line clogged.  Normally the feeds help push the remaining residue through the tube; something to remember next time when we change the rate.

We called the doctor and we decided to leave it out until clinic next week.  She is keeping her oral medications down nicely and surprisingly she'd rather take them by mouth than in the tube, at this point.  I really didn't like the tube myself, however, we want to get her off TPN asap (TPN is hard on the liver), so therefore she may need another tube to bridge the gap between her diet now and what it should be without TPN.  She isn't eating enough calories to be off TPN and tube feeds yet.  The next tube we place will most likely be a NG tube (stomach), in which if it clogs or is removed we can replace it at home ourselves.

No Tube :)


Wednesday Nov. 20th--Natalie

Today Natalie had an appointment with Neurology.  We saw Dr. Bale, and reviewed her current tapering schedule of Keppra.  So far so good.  We hope to avoid trouble as we come completely off Keppra, of course still on Oxcarbazipne.  Natalie actually cooperated well for this appointment.  I was so impressed and proud of her.  Normally she is very upset and unwilling to communicate with the doctors...she is burned out; but surprised me today.
Natalie couldn't wait to get back from her doctors apt. because she had plans to make Alice a princess club (behind the couch).  Only people who are wearing pink, purple or have a dress on can come in the club.  

Thursday Nov. 21st

I think Tyler and I are slowly acquiring a routine, I just noticed that Alice's backpack of clothes from the hospital has yet to be unpacked. (No wonder I can't find those particular outfits)  Had it not been for Tyler's mother who came to help one morning nothing from the hospital would have been unpacked.  I spend all day running around with pumps, medicine, saline flushes, alcohol swabs and more in my hands; setting them down and not remembering where I put them; forgetting what I started and didn't finish; forgetting to pick up a child from school and sometimes even forgetting to brush my teeth for the day...okay I'm sorry but that might have been too much information.

I did manage to make chicken soup today using a whole chicken.  Alice wanted it, so I made it.  She took two bites and was done.  Then she wanted rice, potatoes, tomatoes....the list goes on.  Tyler and I will go to great lengths if it means she will eat.  Some foods hurt to eat, others just don't sound good...but we spin circles around her.  In a few weeks this phase will get easier and life will slow down.

Her favorite food right now is a Kipper Snack, with a side of fresh cut tomatoes...I wish I could eat this way, I would be much healthier.  Go Alice!!  When she can't finish her kipper snacks (sardines) then Evie or Blair will clean them up...sloppy seconds.

We have Grandpa Schellenberg to thank for introducing the kids to Kipper Snacks.


27 comments:

  1. Your a busy Momma Lisy and a good one! My Dad has always loved Kipper Snacks too! He eats them with Ritz crackers, they stink so bad!

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  2. spend all day running around with pumps, medicine, saline flushes, alcohol swabs and more in my hands

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  3. She looks so happy. I wish for a good health everyday.

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  4. Thanks for sharing your story. As for many of us, I've been praying for Natalie & Alice. I will continue to keep your family in my prayers. They certainly are beautiful children.

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  5. I really enjoy reading article like this one. Very informative and an interesting point of view.

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  6. I feel sorry for them but don't lose hope you can overcome this challenge in life.

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  7. The knowledge you provide is a real asset we have. Keep on posting such valuable articles. I like your blog design as well.

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  8. This gives everyone a reason to live more and inspire others.

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  9. I found my self reading your article. And I super loved it. Thanks!

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