On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Tuesday, August 3, 2010

Home Again, Home Again, Jiggety Jog!

So we came home. Hip hip hooray!
We left the hospital and Erin jumped into her car seat like a champ and for about 20 minutes she told me everything she saw out the windows of the car. "Look Mom, a bus, cars, trees, the sun, clouds, trees, cars, trees, cars." Her enthusiasm for life is so contagious. Imagine being so thrilled to see trees and cars again!
The first thing Erin wanted to do when we got home was swing on the swings in our backyard. she looked so content and happy. We went for two walks in the stroller and today she went for a ride in the stroller and this is how she looked when she got home. It's how we all feel.

We've been so tuckered out. John and I took a nap in the afternoon and the kids played all over the house like it was Christmas morning. That said, we ended up spending a lot of time also cleaning up the house like you do after Christmas morning.

Cecily reminded us that it was Family Home Evening so we gathered around the living room couches. Caleb conducted the meeting, Erin picked "popcorn popping" for our opening song and she also said the prayer. John gave a lesson on prayer and then for the activity I picked a Melissa and Doug cars puzzle for us to do. Cecily was in charge of the treat so we all shared a big box of Junior Mints. All through the Family Home Evening the kids were so wiggly and giddy and happy to do something together as a family. I love my family!

After we got the kids to bed our Home Health Nurse visited (she didn't leave until after 10:00 pm) and taught us how to do a few things for Erin's care. Here is a picture of our supplies. It's worse than when we were new parents and we would spend 15 minutes packing our diaper bag with every necessity for our little newborn. After awhile we became seasoned parents and realized we only needed to have a spare diaper tucked somewhere inconspicuous (with prayer that no one pooped while we were out). Well, now we're back to the new parent stage and have to haul some of this load whenever we go out.

The Meropenem (anti-biotic) that we give to her with a pump through her IV
We give it to her every 8 hours.
We keep it in the fridge.

This is a picture of it up-close. It's huge. 30 ml.

Here it is in the pump. The pump is like a kids wind up toy.
John tried to shoot me with it.

Here is an alcohol pad that we use to clean her caps on her tubes
and a 10 ml syringe with Saline in it.
We use these multiple times a day to flush her line.
Erin smells like Saline.

Hand sanitizer.
Our new life could not be complete without Avagard.

A clamp. We have these all over the place.
We use it to clamp off her line if it breaks.
So I sometimes wonder how OCD (by the way, it's alphabetically CDO) I really need to be about Erin's care. These supplies are a life-line for my baby and I'm thankful that we can have her here at home and take care of her here where she can sleep through the night without a nurse coming in to take vitals. Home is healing. She is a million times happier at home with us and she'll get better faster while she is here. Her ANC was 300 on Monday when we came home, but we won't have it tested again until Thursday when Home Health comes again. In the meantime we have to keep these supplies out of reach of our curious children.
But, really . . . how many of us have
an empty drawer,
a spare cupboard,
extra fridge space,
or closet spot
for all this
STUFF?

2 comments:

  1. Wow! That is alot of stuff! Glad to hear you are all home together. :) We love you all!

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  2. Your new lifestyle will become more and more your New Life. I remember coming home with Symi and "the stuff" too. But not NEAR as much stuff as you have. We are so glad that she is home! SO glad that she is happy to be home too. We are still praying for your family.

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