Ashley's Story

She will leave fingerprints all over your heart


So whats a few more?

We made it through another day and all of our children are fast asleep. Dave is working on a new lecture series and I am avoiding the remaining loads of laundry and trying to convince myself that tomorrow holds more than enough hours for me to complete them. My bed is sounding much nicer to me at this moment than the laundry that remains to be put away. Oh, how I love home. I love the smell, the feel, the peace that is found inside of it. I love these children. I love their dad and his amazing willingness to give and give and give without end to all of us. Its been a very long but very blessed day.

Ash was amazing during therapy. I can't keep from smiling while she works. She continues to excite Ms. Sue and myself as we push her along and encourage her to figure out how to move. She was practicing on her knees for awhile, practicing lifting up into the crawling position, and then practicing getting out of it and sitting down when she got tired. One thing Ash hasn't figured out is that she can control how long she has to stay in one position. She kind of accepts that if she is put there then she must be stuck there. Heaven help us the day that she learns to branch out of this line of thinking.

We went to see our surgeon today and set a date for line removal and the end of her coumidin. So Ashley Kate will be having surgery on July 30 to remove the broviac from her chest. So whats a few more scars and another incision? When you look at her tiny chest and abdomen it is very hard to find an area that has not been cut upon. She has more scars than I would have ever imagined and has gone under anesthesia more times than I can keep up with. Although we are used to it, I am afraid you never get used to it. It makes my stomach hurt to think of her going through yet another surgical procedure, but the reality of her life is that there will probably be several more. In the past we have had lines pulled directly from her chest in the doctors office without so much as a little Tylenol to ease the discomfort, but this one is proving to be different. They need to put her under anesthesia and make an incision to remove the cuff on the other end because it is so high and so deep that it will not be able to be pulled through. They are also anticipating more bleeding than usual because of her coumidin and would like her to be asleep as they place the necessary pressure on her chest to control it. The surgeon prefers for her to be sleeping and unaware and in a way I am grateful for his preference. Nervous but grateful. So all in all we have a little more than 2 weeks until we find ourselves without a central line and then the real fun of struggling to find veins that work for lab draws will begin all over again. We anticipate that all will go well and she will be home by the late afternoon on that day. We are planning to travel the next evening to OKC for her 3rd birthday celebration and the doctors feel like she will be fine to travel. Her ultrasounds still showed an occluded right jugular vein that is no longer allowing blood flow, a partially occluded left jugular vein because of the remainder of the blood clot we have been treating, and two beautifully opened sub clavian veins that allow blood flow quite well. I'm concentrating on the beautifully opened veins and counting our blessings for having them. The others are what they are after multiple temporary and semi permanent lines and no amount of worry will reverse the damage that has been caused.

Its time to stop debating over sleep or the laundry and just give in. I'm going to bed and the laundry that is sitting around me tonight will be waiting on me in the morning and thats ok with me. I'm tired and cuddling up next to Dave and listening to Ash's little sounds while she sleeps sounds like a much better option. So goodnight my friends. Hope you had a blessed day. Trish


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