He is our Amazing "A"

It's been another long wait for an update! It's nearly impossible to find time these days, but we know it's important to keep you current. Thank you for your support and constant prayers. Here's what's happened since our last post:

Christmas was special! The hospital does such a nice job making it a happy place for the holidays. He was still feeling quite bad, we did our best, but he was still not feeling well. The nurses were like Santa's elves, they helped him find smiles and an energy to play.

On Wednesday, 12/26 Aiden made the turn. He was joking, laughing and playing for the first time in more than a week. Christmas was over for most, but for us our gift had finally arrived. The steroids had the GVH under control and Aiden was smiling again.

On Thursday, 12/27 Aiden was taken off the PCA pump, which pushed morphine to his central line. This was a huge step, proving his pain was tolerable and even nonexistent. We had another great day and then, he woke up at 2:30am coughing. It was a dry cough, as if he were choking on something. It didn't appear serious, but we couldn't get it to clear. After a few minutes we called for the nurse, to ensure everything was okay. The nurse came quickly, turned on the light and quickly discovered Aiden's central line was bleeding. You can't imagine how scary it was to see so much blood all over his pillow and running through his tubing. Fortunately, it was only a leak in the line. Aiden's cough was obsolete as soon as the nurse appeared, and was not associated with the leak in his line. But, God works in mysterious ways and we believe he woke us with Aiden's cough. If we had continued to sleep, he could have continued to bleed and we don't know what might have been the outcome.

Counts continued to improve and impress. By Saturday, 12/29 all of Aiden's counts were in NORMAL range. There were no numbers in the red for the first time since we'd started looking at CBC and Differentials. Who would have thought, two weeks after transplant we would see numbers that were normal and healthy.

The new year….2013 is going to be the "best year" ever! The past several months have been devastating, draining and daunting. We have dreamed of our tomorrows! Tomorrow is going to come with good health and big smiles for all, we believe!

On Friday, 1/04 Aiden was taken off from TPN/Lipids. This was another monumental moment. Doctors had said he would be on the nutrition for weeks after we went home, until he was able to eat enough on his own to sustain an adequate calorie count. By now, Aiden was eating over a pound of deli turkey a day, thanks to the steroids. This would be enough to avoid supplements…he was doing it on his own. Along with the turkey…Kit Kats, fruit strips, apples and chocolate ice cream would contribute to his calorie intake and building his strength.

On Monday, 1/06 Aiden was discharged from the hospital. We came home with a large bag full of medicines that we would now draw ourselves. Only home for 10 minutes, home health arrived with flushes for his line, bandage changes for his Hickman site, aqua guards for bath time and fluids he would be connected to for 10 hours each night.

The temperatures were perfect over the weekend, 1/12-1/13. We were able to get Aiden outside each day for a walk and breath of fresh air. He walked and walked….to the point we were tired!

On Friday, 1/18 we made our daily trip to clinic for counts and levels. Unfortunately as we were preparing to leave, Aiden felt warm to touch. His temperature was 100.9, and had crossed the fever marker of 100.4. By the time we got to clinic, his temperature had come down, but the doctors were concerned the steroids could be masking something serious. Because it was so soon after transplant, Aiden was admitted for 48 hours to observe blood cultures and monitor for more fevers. The blood cultures never identified infection and the fevers didn't return.

We went home on Sunday, 1/20. Aiden was healthy, and he was happy to be home again. On Thursday, 1/24 we celebrated his sister's 20th birthday together at home. She was home again, after a short break to visit with Christian at her Mimi and Rog-daddy's. Unfortunately, she only gets to see Christian apart from us right now. Ashlynn and Aiden were sharing smiles again, the smiles we love most.

This is 1/28, day +46 from transplant. We are almost half way to the 100 day mark. Today we cut the few strands of hair Aiden had left. It was extremely emotional, for all of us. Because his hair only thinned for the first several months, we never had to have the "hair cut" conversation. Unfortunately, since high dose chemo and radiation prior to transplant…Aiden's hair has drastically fallen out. All that was left to cut were pieces. What we cut looks less like a haircut, and more like a baby's first trim. Sadly, it's all that was left on his head. Since it's been cut, he looks much healthier. We hope he will find comfort in his new look. Hair will grow back, we'll just watch and wait. For now, the hair that's prominent is from his anti-rejection medicine. It makes dark hair grown on your face, arms and head. So far, Aiden's eye brows are the only place that show prevalence.

Again, we apologize for the long wait and thank you for your continued support. We know we could not do this without you!

For now, please keep praying!

News Channel 2: Aiden's Story