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, March 9, 2012

Pancake overload and a dog

Every day it's pancakes...even for dinner. Anytime we ask Alice what she would like to eat, her response is always pancakes. One time I couldn't cook them up fast enough so she just dipped a spoon into the powder mix and ate it like cereal. Of course I had to toss the entire bag after that. She is crazy for them. The last few days at the hospital she would order pancakes for breakfast, maybe it just tasted good to have food again. Now she is hooked on pancakes.

Since Alice has been home she has turned into a dog, in her words, "I'n a dogie." Because she has to crawl everywhere she figured she may as well make it something fun. Every once in a while I will feel something licking me, sure enough it's our dogie. I have to tell her not lick or pick things up with her mouth because it can make her sick, but what kind of dog is worried about things in their mouth. This alone has motivated us to help her walk even more.

Major improvements with walking today. She walked with help from only one hand. Hooray!

The medicine thing is not our favorite part of the day, neither for Natalie and Alice. Alice calls it "yucky medicine" and tonight I was starting an infusion and she said, "no, that's yucky," I told her, "it isn't yucky because it doesn't have to go in your mouth," then she said, "it's yucky PICC line medicine".

My phone rang mid-morning and Alice immediately said, "it's Papa Schellenberg," I looked at the caller ID and sure enough it was. They came by to visit and when it was time to leave she repeated over and over, "no grandma don't leave me!" Maybe we are deprived of company. ;) Soon enough this will be a memory--besides when are we ever going to have a perfectly valid excuse to be home 24/7 all together again. I know this time will be full of lasting memories. I'm certain our family will discover in years to come that this time of quarantine has instituted a more solid foundation for the rest of our lives. If it doesn't make us weird. :)

Natalie did something new for the first time today. On our short outside adventure today she learned how to ride a two wheeler bike. Yes, she is 8 and just learning. It's something she hasn't felt the urge to do until now. Even until she was baptized she hadn't had her head under the water entirely (because of ear tubes). Anyway, what I am saying is that she is ready to take on the world. She understands that things are different for her. She talks about stuff she wants to do and see. I found myself a little emotional when she rode the bike, even if it was only 8 feet. I mostly felt emotional because I know that she has so much to explore and experience ahead of her. She asked me today, "how many more days until I can be like everyone else?" I told her it would be soon. She also said, "will I be able to touch anything I want?" I tired to imagine what it must be like for her to feel so trapped. Oh, Natalie I can't wait until you can feel the freedom of careless play. I know that a good healthy childhood makes for a good healthy adulthood. No child should ever be shorted of their childhood. She has done a fine job to compromise for substitutions in the meantime.

All the children except for Evie of course are having a Friday night slumber party. Tyler and I made certain we were not invited. With no surprise Natalie has her favorite Peruvian music on repeat. Keep in mind she is hard of hearing, so you have Natalie next to the player with it turned up decently enough, and Alice on the other side of the bed plugging her ears saying it's too loud.

Once they are asleep we will turn it off. I'm afraid now Tyler and I will be tripping over Matthew and Blair as we deal with the nightly chaos in the girls room with over flowing diapers and infusions being switched. Matthew made me understand that he won't mind as long as I give him a big kiss and hug each time I come in. He keeps a little stuffed giraffe with him at night and he pretends it's Evie. He asks if she can sleep next to her, but because I don't think that is a good idea he came up with his own. He loves Evie...sometimes he smothers her with love to the point of irritation.

As for Tyler and I, once the house is quiet sometimes we just stare at the wall, at some point your mind needs to think of nothing, right? I'm afraid our thinking of nothing is necessarily unproductive, and could be a waist of time, but wasteful as it is it's survival. As tired as we might be, it's a shame to go straight to's our only time to listen to nothing...what a beautiful sound it is!

1 comment:

  1. I love your stories about your kids and how they're coping. You really do have such a wonderful little family.