Ashley's Story

She will leave fingerprints all over your heart


Boo-Boos Make her Cry...

...and her mommy too!

I walked in her room this morning(Dave has been staying with her at night) and as soon as she saw me she pulled her little hand out from under the blanket and showed me her new "boo-boo". She cried and held it up for me to kiss. Heart break! Even after 3 years, multiple sticks, hundreds of needles, it still breaks her heart and mine that she has to endure them.

Its been 3 hours since the "stick". She's had a bath, her meds, clean jammies, her hair done, hugs and kisses, and she is still heart broken about this pink band-aid. She doesn't like what it represents(although we do appreciate more than they even know that they gave her a pink one), but she doesn't want it pulled off. Each time I try she yanks her hand away from me and cries. She knows it will "hurt" if I pull it off. I think she knows it will only last a second, but still its the anticipation of the hurt that she can't get past. So she continues to look at every few minutes and make the face you see in the picture. Its a reminder of what happens each day that she stays here in this bed. She can no longer feel the stick, but the memory of it is haunting her.

Wow. I too am wearing a pink Barbie band aid. Its not on my hand. I wear it on my heart. It represents all the boo-boos we've had over the last 3 years and even though I'm sure the Father would like nothing more than for me to allow Him to pull it off of my soul I continue to wear it. You see, just like our Ashley Kate I know that the pulling off of this band aid will hurt. Maybe for just a second or two, but its still going to hurt. Under the band aid I'm going to have to look at the hole that was left by the needle, and around the hole the bruising that has surfaced will be revealed. As I type the tears are stinging my eyes. Its this band aid that I continue to wear that allows me to hide all that is under neath it. Its this band aid that keeps me away from my friends and out of our social groups. Its the fear of someone trying to reach over and pull it back, even just a little, that I'm scared of.

Ashley's stool culture was negative for ROTO(?) virus, and now we need to send of the other stool cultures I requested on Monday. I requested them not because I thought I knew more than our doctor, but because I knew that our transplant team would want it checked for everything. They called yesterday and asked if we had sent all the stool cultures. I had to explain to them that it had not been done, and today they are requesting that it be done. Our local doctor is wonderful to us and to Ashley. I have much respect for him. He is the only one who was willing to say, "I don't have any experience with a transplant patient, but I am willing to learn and to communicate with her transplant team". That is all we were looking for. Someone who would be honest with us and willing to learn how to care for Ashley. He is our front line of defense in caring for Ash. If you felt I was showing him disrespect by asking for the cultures to be sent then I apologize. It was not intended.

Ashley continues to stool out in very high amounts. Until this stooling slows down I am afraid we will need to stay put. There is a possibility that if her electrolytes become stable that we may be able to replace her fluid lose enterally by adding 1/2 normal saline to her tube feeds. This may allow us to get home before the virus runs its course. She will require labs to be drawn more often to stay on top of things and since she no longer has a central line that means she will be wearing lots of pink Barbie band aids until she is well again. If you see us around town just ignore them, I'll do my best to sneak as many of as I can while she sleeps. She may have a virus for several, several months. They tend to linger for a long while in transplanted GI tracts. Our main concern is that she not become so sick that her organ grafts become jeopardized. Its always a possibility, but so far so good. She does look much stronger than she did earlier this week.

Thanks so much for continuing to pray for our little pickle. I love reading how grown up you think she is now. I look at her and still see our baby, but knowing that she appears to be growing and changing in your eyes is such a blessing. She truly is a miracle! We are so blessed.


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