Ashley's Story

She will leave fingerprints all over your heart

6/16/2010

Summer's Here

In case anyone was wondering what the weather was like in our part of Texas I thought I would share with you that IT IS HOT!!! It may not be officially summertime according to the calendar, but let me tell you IN TEXAS IT IS.

I spent about an hour outside the first day of baseball camp watching Blake and that was all my skin could handle. I am so sunburned its ridiculous and so I have limited myself to not showing up until the last 30 minutes of the day. Then I follow it up with 3 hours of soccer camp with Allie each evening. Thankfully its just the first hour that is miserable then it starts to cool down.

Its far too hot for Ash to enjoy any time outside. Since transplant she's never been able to handle the extreme temperatures. Not sure why she just starts to fade fast either in extreme hot or cold temps. So she's still spending lots of her days indoors and only leaving the house for the occasional pick up or drop off of one of her siblings. She looks good. She's happy. Not sure I could ask for much more than that. Unfortunately she is still very skinny from being so sick last month. I thinks thats why she still seems so weak. When you pick her up you feel skin and bones. Every rib is visible as well as her vertabrae up and down her back. Her arms and legs are "stickly" looking. Other than that she does look good. She is asking to stand up and to walk again. She makes it a few steps before needing to sit back down, but she's interested and thats at least a place to start. She has ridden her amtryke a couple of evenings and looked so good doing it. We have tried a few more times and she didn't make it that far. We began feeding her by mouth again this week. Taking it very slow. She's only interested in a spoon or two at a time, but again at least its a place to start. We has some blood sugar issues over the weekend which was very, very un-like her, but they seemed to have resolved this week. She's silly again, and that brings a smile to our hearts. She is signing well, running the house again and getting us all back in line the way she likes us to be. Not much you can deny her when she looks so very sweet.

I love the carefree feeling that summer brings to our home. Its just about enjoying each other's company, having friends over, and playing ball. Thats what the kids are up to every single day. I love having them around with all the chaos that follows. I'm up to my elbows in paint and party supplies. I have lists made on top of my lists. I'm trying to prioritize and then place each detail of her birthday party into categories to stay on top of it all. Its busy and crazy during the planning phases, but the execution and celebration will all be worth it.

My sister is on her way for a visit later this week. My other sister just went back home from her visit. My mom is coming to play with Ash in the RV this weekend so Dave and I can enjoy watching Blake play without worrying about Ash in the heat. All is not always right in our part of the world, but life is just too wonderful to worry about the things that aren't. We are just grateful. That's the best word I can find to describe the state that Dave and I live in. Grateful for all that God has blessed us with. Grateful for the lives of our children. Grateful for the normalcy of our days. It doesn't get much better.

Hope you all are having an enjoyable summer with your kiddos underfoot. I can't think of a better place for them to be=) Talk to you soon. Trish

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