A few more
Ok, you convinced me to answer just a few more questions today. I'm sure I'm leaving some out. As a matter of fact I know I am. I just thought I would pause real quick, snap the couple of pictures you requested, and tackle one or two more.
1. What is the reason Ashely Kate does not speak? Did she ever? How did she learn to sign?
Long story, but quick version here.
Ashley Kate was 14 months old at the time of her first transplant. Before leaving for transplant she could say, "my mama". They were her only words, but they were the sweetest sounding words ever spoken. Her voice so tiny, so sweet, so beautiful. We would lay at night listening to her chant over and over again, "my mama, my mama, my mama". Never in my wildest dreams did I ever think this would be her only words ever spoken to me. Never did I imagine she would not have the ability to speak to us. In January of 2007,at 18months old, while still recovering from transplant in the PICU things changed very suddenly. One minute Ash was on my lap and we were reading a book and she was saying, "mama, mama, mama, " and the next she was struggling to breathe. She coded that day as a needle inserted into her pericardial sac to remove fluid build up accidentally went to far and pricked her heart. It stopped. They did CPR, chest compressions, etc. for 10 minutes. Ash lay on the vent and I begged them to tell me she would be back. I wanted our baby back. No promises could be made. Ash did come back to us. Her voice did not. Thats the story. Mostly anyway.
She learned to sign by watching Signing Time DVD's, looking through their books, and studying the flash cards. She asks all day long by pointing and tapping at pictures in her books what the signs are for different things she doesn't yet know. I stop what I'm doing, run to the computer, type it in and show her. Then she knows a new sign. Its a never ending process of learning. She currently uses approximately 200-250 signs to communicate with us. None of us are fluent in sign.
2. Where did the swing in her playroom come from? How did you put a swing indoors?
Fun answer. My imagination. I dreamed it up when trying to imagine what Ashley Kate might wish for. The playroom was our request for her Make a wish. Make a wish agreed to have it painted for us. We chose a friend of ours here in Longview who is an amazingly, talented artist to come in and paint it for us. She also created the tree from our vision and David made and hung a swing from its branch. Actually its hung and bolted through the ceiling, into the attic, on the rafters. Its beautiful! She loves it. The artist brought our vision to life for us in this room and it is where Ashley and I spend most of our day. She loves to be in here. We also use the room for her therapy. Her therapists come to us, rather than us taking her out to therapy. They work with the tools we have in the room. A standing bar and mirror(gifted to us from our local Ambucs group whom we love!), parallel bars, the swing, therapy balls, walkers, gait trainers, wedge mats,etc. We use most of her own items so that we don't have to worry about germs from other house holds.
The play room is a work in progress. Painted as her Make a wish, we have slowly added the remainder of the room as finances and time have allowed. The window seat was finished out by our friend the artist who also can sew! My mom and sister gifted us with the sheers in the windows this summer. Dave built her shelving unit, from a pottery barn image, this fall. Her rug I picked up in Canton. The rocking chair was a birthday gift from grandparents on her 4th birthday and it was painted by the same artist. The table and chairs were last years Christmas gift from grandma.
Everything but two items from our original vision are complete. We still would like to have a fiber optic star ceiling put in for us to lay under with Ash at night. She loves the stars! I also plan on installing a pair of interior french doors so that the room and all of its toys are not seen as you enter into the foyer of our home from the front door. Like I said, a work in progress!
We love it!
3. I get asked this next question often. How do you keep all the medical supplies organized?
This is obviously asked by other families dealing with similar circumstances to ours. Each week we receive a minimum of two large boxes filled with supplies. Some weeks we get up to 8 large boxes. We have supplies running out our ears. Literally!!!
I keep them in the laundry room closet, the kitchen drawers and cabinets, her closet, her armoire and here:
In this nifty little organizer. It was a gift to us from Dave's parents. It was originally a hardware holder from the old Target here in town. My mother in law bought it from them to organize small craft supplies in her shop. They are moving soon and we thought it would be perfect for use in Ashely's room in an attempt to keep most of her daily supplies in one place as opposed to running all through the house at all hours of the night trying to find pieces.
I would have to say this has hands down made our life MUCH, MUCH simpler. It has been the biggest blessing. As the boxes arrive I take them to the nursery, place the pieces in the bins, put the over flow(yes we have a lot more supplies than what you see fits here in this photo) in the armoire and closet, then toss the box into the garage.
This has been the best thing ever given to us. Besides our children of course. I wish I could locate one for every single family living a life similar to ours. It is that wonderful.
4. How did we choose Ashley Kate's name?
Well, all I know is that we knew we liked feminine names for our girls and masculine names for our son. Blake is a Blake because it sounds so guy like. Allison is an Allison because her daddy thought it sounded very pretty and it would never be mistaken for a boys name. Ashley came about in the same way(although I do know some boys inherit the name of Ashley. No judgement coming from me:). Her full name is, Ashley Kathrine Adams, the Kathrine being named after my oldest sister. Who happens to be an amazing person! To say Ashley Kathrine is quite a mouthful and so we have shortened it to Ashley Kate. Always have referred to her with both names, although I'm not sure why because we don't use Allison's middle name which happens to be Brooke when talking to her. Anyway, thats how and why we call her what we do.
I also love the fact both girls names start with an A, and to be honest if I ever had another boy I would make sure his name started with a B. Not sure why, but I would.
Not sure if you noticed this about me or not yet, but I also LOVE to see Ashley Kate embroidered on just about anything that she owns. It makes me smile!
Thats all I've got time for today. Just a little more housekeeping on the old blog. I've got to run.