Ashley's Story

She will leave fingerprints all over your heart



The call just came in. Well, actually two calls came in, but lets talk about the first. Ashley's cultures from the 1st are all NEGATIVE. I can't even tell you how good it feels to hear those words. Knowing how difficult this bug is to clear and that no one expected it to clear I'm just absolutely thrilled! We will continue to treat through Saturday and then be done. A full nights sleep for all of us. I'm just so happy.

Ash looks great this week. She is happy, playful, giggly, and moving about. She managed this infection very, very well. It was scary for a couple of days, but other than that she did really well here at home. I'm so proud of her. So proud of she takes it all in stride and keeps being Ash. She has to be the most well behaved child I've ever known. She has grown and matured so very much. On top of all that she is just so stinkin sweet.

The second call came in from our transplant coordinator. Just letting us know the surgeons decided that they would indeed be willing to list Ashley Kate for transplant as soon as we are ready. We aren't listing her at this time, but when the time comes that we all agree to then she will in fact have a spot on that list. I guess you could consider that positive although the whole need for another transplant is negative.

We are adding a new physician to our semi-local team. Not because we want to, but because we are being asked to. Next week Ashley will be seen by an infectious disease doc from LSU. He works with our pedi-surg team in Shreveport. They requested he be on board for the next round of infection. Everyone expects there to be another one around the corner. Of course I hope she can prove them wrong, but it is the cycle of life that she is currently living. One infection after another. Our philosophy is always less is more. The fewer times she can be in physician offices, the fewer doctors we have to take her too, the fewer labels and diagnosis, allow her to live a fuller life. Its the way we parent her. Our choice to try and normalize her life as much as we possibly can. I'm sure he will be a welcomed addition in time of crisis. I just don't intend on adding another trip each week to his office just so we can chat. Only when needed after this first meeting.

Today will be more of the same for me. Painting, sewing, constructing one of her best birthday parties ever. Its sooooo much fun preparing for. My lists seem to be getting longer everyday, but more and more are being marked off as I end each day. Its really fun to be back in the playroom painting away with Ash underfoot just as we were last summer. Some bittersweet memories, but we are looking forward to her party trying not to remember how wrong things went a year ago as we prepared for it.

Lots to do today. Its just so much fun!


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