Monday, November 19th - There he goes!

Hi everyone. Well, things are somewhat the same as the last post but fear is battling with my hope and faith causing some horrible nightmares each night. You see Alex's heart is beating at about 160 beats per minute. A normal five year old's heart beats about 80 or 90 bpm. If Alex were an adult this high heart rate would indicate only a few days left but since his heart is young and strong then all we really know is that his body is not utilizing the oxygen well and his heart is trying to compensate for the deficient. Speculation is that the tumors are causing his lung function issues and could very well be a part of the heart rate issues. We know his paralysis is worse on his right side. His right eye has pretty much stopped being able to follow a moving object and soon we will have to restore the moisture (tears) it is not producing for him. All of this is happening but Alex's smile and incredible spirit still light up our days!

On Sunday, using the ramps Steve and his friend Mark (visiting from Idaho) made on Saturday, Alex was able to leave the house of his own volition in his new power chair! You can't imagine the joy in this little boy's soul. It was absolutely tangible! His power chair came with five skins of different colors and Alex was told to put on the red skins when he wanted to go fast! So after he made it down the ramps he asked for the red skins! Then we headed out into the alley and around the block. There we found our neighbors and Alex's best friend enjoying the absolutely incredible, warm, beautiful day! We all headed out to the park a few blocks away with dogs and Frisbee in tow. Alex had a great time going fast and even asked Esther for a race on the grass! I don't know who one but who really cares! It was so weird for me not to know where Alex was at all times. I just am not used to his new mobility yet. So we played Frisbee, watched dogs run and did some cartwheels. It was a glorious time! Alex's stomach then started bothering him and he wanted some O2; so we headed home. Alex was not even willing to drive the power chair on the trip home. The rest of the afternoon was spent comforting him and doing anything we could to help him feel better. Alex had to take a bath after his nap at which time we noticed his Broviac line (which he vehemently wants out of his heart) had been pulled out of his body a few centimeters. Luckily, Alex's hospice nurse said it is still okay but I must say all of my nightmares last night revolved around this situation.

So, we are just a few days away from Thanksgiving. I have so much to be thankful for and so much gratitude for it all. I just wish this nagging little voice in my head would stop saying, "this is Alex's last Thanksgiving, will he make it to Christmas?" I've tried to ignore this voice but it is relentless! Then I realize that all I really have is this moment and it really helps me get to the next moment. So here we are again, just striving and thriving from moment to moment.

Okay, I'm exhausted writing all of this inner turmoil stuff. I really just want to focus on the holiday and the fact that my sister's family will be here very soon. I hope each and every one of you know how grateful we are to know you are out there; praying and hoping and crying with us. We love you and wish you a wonderful holiday filled with family, friends, laughter and joy!

God bless!
G