Wednesday February 17, 2010

Wow what a day it has been! I am glad this day is over. It wasn't that the day was awful. It hasn't been a bad day. In fact, we had several moments that were pretty wonderful. I feel very blessed. Sometimes this whole situation seems to swallow up all my happiness. I don't want anyone to think we are worse off that anyone else. I know so many others in this world suffer and endure more than we have. I know there are lots of other children who are sick or terminal. My heart goes out to everyone who is struggling in one way or another. It may not be with a sick child like us. But we all have our own burdens to carry. We are never alone, struggling under the weight of our burdens. There will always be someone there with us. There are always angels watching over us. They come in so many forms: friends, family members, concerned neighbors, a total stranger in the store. For us, so long ago, those angels were Elder Rasband and Elder Rowe. I got an email today, letting our family know, those two great men still think of us. After all this time, they haven't forgotten our family. I can't think of anything more touching! I still remember the spirit that filled our home when they came to visit. It was remarkable!! Just hearing of their concern gave me the lift I needed. It reminded me again, we are never alone. Heavenly Father watches over us. He lets us know we are loved and special to Him, and through his servants on this earth, He reaches out to us.

Ashley continued to struggle. When she woke this morning, she felt very tired and her body was hurting. The good part, she was hungry and wanted to eat. She wasn't able to eat a lot, but I am thankful for every bite that goes into her mouth. Thankfully, the diarrhea wasn't as bad. She was able to eat and not run to the bathroom continually. Definitely a blessing!! (0: Our biggest hurdle today: surviving the bath. She loves sitting in a warm bath. Who can blame her! When I feel sick, I love to soak too. She wanted to bathe so badly, I relented and filled the tub. I knew she was already very short of breath and tired, and that it would be very difficult, but we went ahead and made the attempt. Yes the water was super comforting to her. Yes, she was desperately tired climbing into the tub and had to sit for a time to catch her breath. Getting out of the tub was equally difficult. But through it all, she survived! She had to take a nap afterwards, but I was grateful she somehow found the strength to get in and out of the tub. It is going to be so hard when she can't anymore.

Throughout the evening, she was miserable. Evenings are always the worst time. She was hurting and tired and short of breath. We decided to increase her lasix in the afternoon and evening. I do feel it helped tonight. At the current time, she is breathing alright. Her legs continue to pain her. Getting out of bed is increasingly harder. Even moving her legs on the bed while laying down is difficult. I hope increasing her calcium will help a little. We can always hope.

I have to write a quick thank you to those who so generously donated freezer meals to our family. Thank you Sara for bringing them over. Thank you to Sis. Kirkman for helping pick up the kids from school. Thank you to everyone for your notes of encouragement. You all keep us going!! May you all have the richest blessings from heaven poured down on you tonight!! (0: