Its been a good year. Actually it was a great year. One that we could hardly dream of ever having, but still always hoping it would come our way. In just a few short days we will be celebrating a year away from UNMC. I can hardly believe it. A whole year!
The first six months of the year were full of local and semi-local hospital stays, side effects, line troubles, multiple surgeries, and bowel rehab, but the moment we stopped giving her the "drug" her life changed and so did ours. It changed so very much.
I'm looking ahead with much anticipation. Looking at 2010 to be "the" year. Dave and I are concentrating on the good and doing our very best to not look at or discuss any of the bad. It feels good to be at a place in her life that we can stay focused on her progress. Although it comes painfully slowly we are so aware that IT IS PROGRESS. She is as happy as she's ever been, so full of life and personality. She laughs and giggles freely and so seldom signs to us that she is hurting or in pain. More often than not the only time she signs "hurt" is when her feelings become hurt from being told no or that she must wait a moment. That cracks me up. The whole "you hurt my feelings" thing is just funny to watch as she pulls every trick out of her hat to try and get what she wants. Truth be told 90% of the time she gets what she wants so when she shares that we have "hurt" her feelings it does bring smiles to our faces. What a personality our tiny gherkin has!
Ash still requires tube feedings 24 hours a day and does not know how to bite or chew food. She eats somewhere between 200 and 400 calories a day of baby food by mouth. Ash still does not speak. Her voice is silent except for laughter, crying and a little babbling here and there, but I truly believe it inside of her. Somewhere. She signs her wants and needs. At times signs just to be "chatting", and signs when "reading" her books to share with us what she sees on the pages. She can stand while holding on to our hands, her parallel bars, the arm of the couch, etc. She can take steps in her bars or while holding onto our hands. I realize that by normal standards it doesn't look that good, but when I see her struggle to take steps across the rug or along those silly bars its absolutely beautiful. Like I said, its progress. Slow and painful, but still moving more toward the goal of walking than away from it. I don't see that her braces have improved much of anything for her. We had high hopes that she would take off once she had them, but they haven't really made a difference. She "walks" just as well with them off as she does with them on. For now we continue to put her in them daily in hopes that they are helping in some way. She does move freely about the house on her bottom. Its really amazing to see how she has adapted and how she has figured out to scoot around on the floors. Each day I'm reminded that choosing to not have any carpets in the house was the right decision for her. It has given her great freedom. I love it when I go to her nursery to check on her and she's NOT in there. Just makes a smile come across my face. She loves her chair. Her favorite thing to do is honk the horn over and over and over again. She has learned to drive it forward and backward, but still refuses to stop. She drives the FURNITURE all around as she "bulldozes" the couches and tables and chairs out of her way. The scratches along the walls and the floors make me crazy, but I sit still at night and stare at the beauty of each new scratch realizing that they represent freedom and independence for my daughter. We have not figured out how to equip our vehicle with a lift of ramps just yet. There are several options in all different price ranges and we just aren't at the right place to make it happen yet. The chair weighs more than 300 pounds and it takes Dave and Blake both to disassemble it and load it in the car. There is no way I will ever be able to take her to her appointments or out of the house in it at this time. Its just an impossibility. Most importantly though she is amazing and her life is still miraculous. Its fragile and can change literally from moment to moment, but the period of stability we have been blessed with the last 6 months has been such a blessing. Such a gift.
Tonight we anticipate celebrating the new year together in our home for the very first time since before Ashley Kate's birth. Nothing special planned. Just a quiet night of reflection on the goodness of the Lord and watching our youngest play as late as she possibly can. Then I plan on snuggling up with Dave on the couch and just being still as we anticipate together what God may have in store for our family this next year.
Its been a good year and we look forward to the upcoming year. Wondering where it will take our family as we make our way along the journey of transplant. I pray your year was blessed and that your celebrations will be memorable. God bless. Trish