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.

Saturday, August 4, 2012

Cake for Evie

We love having Alice home.  She is still very swollen with fluids.  She asks to have her feet rubbed often.  The more she gets around the easier the fluid can move through.  Being home is great for her movement.  Interestingly, Alice is having a hard time keeping up with Evie.  At this point Evie walks fast than Alice and does the stairs.  It's hard for Alice to do stairs and tires easily when on her feet too long.  Truthfully, we are all having a hard time keeping up with Evie.

We celebrated Evie's 1st Birthday.  It was fun to be was LOUD.  Not exactly your fun playful party kind of noise, it was more that Evie has been experiencing with her vocal cords.  Wow, it's amazing how one so small can be so loud.  Alice does not like loud noises so when Evie hollers and screams it makes Alice get louder to try and stop her.  Finally I started to whisper to the kids and suddenly everything became quieter and calm.  They had to be so quiet to hear me...I love that trick.

Tyler and I feel like we stepped back in time with the many added medications Alice is on.  We have to remind ourselves that we need to be friends with the clock again in order to find efficiency with her med routine.

One of my favorite things is when I wake to one of my children standing beside our bed or even better when they climb inside.  Since Alice has been home she has come to the bedside each morning making little noises and giggling. When I look over at her she is holding my eye glasses and hands them to me.  Then she says, "I hungry Mom!"  This phrase is something we hear almost every 10 minutes...even after she eats.  Sometimes she rubs her tummy and says, "My tummy is hungry."  Her little belly is very extended and often hurts.  We are helping her understand that once she has food in her tummy she needs to let it rest before she eats more. She will physically feel full after eating but mentally she still craves food.  This hard for her to understand.  This is one of several side effects to the steroids.

And just for the record, we will someday regularly wake up before our children...that's when things get done.  However, Evie is an early bird, she is up no later than 6:00/6:30 but loves to come into our bed and play while Tyler and I pretend like we are still sleeping.  I think pretending makes us think we are getting more sleep. Tyler and I have to remind ourselves to be patient and that someday a full night's rest will come.  With that said, I think the majority of people regardless of circumstances find sleep to be a delicate thing and restful sleep often hard to come by.


                Before cake we had to have our spaghetti and of Evie's favorite dinners.

The cake turned out alright it was gluten free, dairy free, yet tasty.  It doesn't look very good, decorating cakes is definitely  not one of my talents.

This little cradle is a Total Class Creative gift.  It is so cute and simple, Evie played with it over and over, putting her doll to bed many times.  She would take her baby out, kiss her and then tuck her in.  It never got old, she did this for at least an hour.  I wondered if she would be old enough for this kind of play.  She knew exactly what to do and was completely content...nurturing truly is inherent.

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