Ashley's Story

She will leave fingerprints all over your heart


Her New Favorite

Ashley Kate's newest favorite thing to do is dig through her bags. The first thing she requested this morning as I got her out of bed was the red bag hanging in her room. It had not yet been unpacked from our hospital trip last week so it was FULL of fun things for her to get into. Every single day I learn more and more of what she knows and how fully aware of the world around her she actually is. She is always listening, learning, watching, and figuring things out. With all the cares we do for her it is sometimes easy to forget how "5" she actually is. Her mind is able, it is working, it is intelligent(whether or not she ever CHOOSES to stack those stupid blocks on command or not!:)

Here a few photos I was able to capture of her in "action". Enjoy!

First thing she pulled out was a mask. She is actually pretty good at putting them on to let us know she is ready to get out of the house for a while. So funny to see her do this. Just a suddle hint.

This mask is one of ours so it wasn't fitting the way she needed it to. Hers are actually much smaller and don't cover her entire face.

Next item she discovered was her stethoscope. We always leave the house with her bag full of her own supplies. We don't use the same stethoscopes that they use on other patients. She has her own and its only ever touched her. Its funny now because all of her doctors and nurses ask for hers before they examine her. Just one of those things I'm really picky about when it comes to her cares. I just like to be careful and germs can live on anything! Especially stethoscopes that sit around in hospital rooms and offices:)

She's watched a few too many doctors "tap, tap, tap" on it before listening. I had NO idea she had picked this little trick up!

Then she proceeded to place it on her chest and have a little "listen" herself. Without the ear pieces in of course! She cracks me up.

Ok, this BLEW ME AWAY. I have NEVER seen her do this before. Can you tell what it is? Its a syringe. Don't get all crazy on me, its not a sharp. It was a blunt tipped saline syringe that she found in the bottom of her bag. Underneath her dress, in that exact spot, you will find the two lumens of her central line. Yep, my sweet girl new exactly what that saline flush was used for and she took it to the correct spot. I was stunned and so happy that I captured the moment on film. She is SOOOOOOO smart!

In some ways the photos are extremely sad. What 5 year old is so used to medical procedures that she knows how to use all of these items? That is very sad, but on the other hand this is her life and she's in her environment. Its what she knows so its how she chooses to "play". As long as she in her own room, playing on her rug, at her leisure then I'm so ok with it. Its when we are not at home and she is scared and hurting and so very sick that it breaks my heart. Today I just found it to be precious. So precious to watch her show me what she knew.

Last night was a long night for us. Dave and I were both awake most of the night and we were so unsettled. This morning to see her smiling face and her twinkly eyes has been the best "medicine" for us. I'm just so thankful we are here in our home with our girl. So thankful. Thank you for praying for us. We've got many more tough days ahead of us and its beginning to wear on our hearts.


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