Song and Dance

Daddy's Birthday

Serena picked out a remote control helicopter for her Dad. It was a huge hit. Michael had to fight to use his gift. Serena wanted to take over the controls and Aaron balled his eyes out when he could not eat it. Michael is getting the hang of flying it. We only have one broken propeller so far.

Serena also made him chocolate cupcakes with white frosting and coconut sprinkles (her own personal creation). Those were also a hit.

We love you Daddy!

Pirate training

We just have to laugh! What else can we do. Now it is eye patches. Aaron has exotropia. His left eye follows normally, but the right eye lags behind causing a double vision. We patch his good eye 2-3 hours a day to build up strength in the right eye. I must say, Aaron is a champ. He takes it all and runs with it (literally). Nothing stops him. He is getting good pirate training! We will have to take him on The Rose Family pirate cruise sometime:)

Cincinnati

The Cincinnati Children's Hospital is like a small university from the outside. It is huge and right downtown. There are about 7 separate buildings on the main campus that are all interconnected. The parking garage is underground and a bit of a maze if you don't know what you are doing. Luckily we made it to our appointment just in time for 8:30am.


Aaron was assigned to the Lion room. We saw so many people I can hardly keep track. First the nurse came in to take his vitals. Then a fellow came in and got a background on Aaron. She said we are making the right choice having the transplant done here. She says they do more transplants for immune patients than cancer patients. That is probably unique to this institution. I believe the most common cause for a bone marrow transplant is cancer and that is the majority of patients at all other institutions. This bone marrow transplant group specializes in immune disorders. We already knew that which is why we drove 15 hours to see them:)

Then the doctor came in to discuss Aaron's future. He has a very different approach than Tampa. He wants to use a live donor rather than cord blood. With cord blood, there is a one time use only. If engraftment does not occur, there is no reserve. However, with a live donor they will take more marrow than they need just in case it is needed. The risk is graft vs host disease is generally much more common (and often much worse) when using live donors. This was a lot to take in and will require much prayer and education. However, we will most definitely use Cincinnati Children's Hospital since they have the experience and one of the highest success rates in the country.

Next we met with the transplant coordinator and the search coordinator. They were both very nice and will be our go to people until the transplant.

French Fries & DVDs (aka Road Trip)

We got a late start leaving Monday morning. Aaron has always been an early riser waking up between 5:30am and 6:30am. He picked Monday morning to sleep in until 8am! Then he decided he did not want to eat breakfast. We had to wait until he felt like eating and then we finally got on the road by 9:00. After filling up with gas and stopping by Walmart for an FM tuner (so I could listen to my book on tape with the iPod), I turned on Aaron's DVD player and we headed out of town.
Our first stop was just after Gainesville. I let Aaron out to run around, we changed his diaper, and attempted to feed him. I bought some prepackaged Gerber toddler meals that would be easy on the road. Aaron was not having that at all. I tried two different varieties. It took some careful maneuvering to keep him from throwing it on the ground of the car (this is what he does at home when he does not like his food). I finally gave in and went to the Wendy's drive thru and got him some fries. Now he was happy.

We made two more stops before reaching our hotel in Atlanta. Aaron barely ate on those stops and just begged for his favorite juice. Aaron did not want to sleep so I let him run up and down the halls at 10pm until he was tired enough and finally crashed. Michael met up with us in Atlanta and we drove the whole next day. We arrived in Cincinnati by 7pm. Overall, not a bad drive. We had beautiful weather. Also, the book on tape was excellent. I highly recommend it for anyone who enjoys a good adventure. Pirate Latitudes by Michael Crichton. Rumor is that Steven Spielberg is making it a movie.

Heatlh Update

So much has happened since the last update. I don't think I can remember everything, but I will try.

Aaron is doing absolutely AMAZING!!!! He is happy, energetic, and oh so smart. We went to the pulmonologist this week and the doctor said he is stunned by Aaron's progress. He shows no signs of ever having the pneumonia. He can't believe how big Aaron is. The first time he saw Aaron was when he sent us to the emergency room. Aaron was weak and could barely walk, gray color, and very skinny. Now he is bouncing off the doctors office walls and chatting away with him. He has reached 97% for his height and is taller than almost every other kid his age. The doctor feels he is in excellent shape for his bone marrow transplant.

Later that day we went to the pediatrician. She was also thrilled with his progress and in awe by how tall he is. She says he well exceeds every milestone for his age. She was very impressed that he knows his letters and numbers. When she opened the door he pointed to the number six on the door and said "six." Her jaw dropped. It was very funny and I must admit I beamed with motherly pride. Now for the not so exciting news.... Aaron needs glasses. How on earth am I going to get him to keep his glasses on? We will go for an evaluation with the ophthamologist later next month.

Transplant news... I am finally coming to terms with this reality and becoming more positive about it. His life is not in my hands, but God's. Michael and I are doing absolutely everything we can that is humanly possible to set him up for success. We have read countless articles and consulted with many doctors. Although Tampa is the closest transplant hospital, their success rates are not the best (they are not bad, but we want the best). We are going to consult with Cincinnati Children's Hospital. They have one of the best pediatric immunology programs in the country and they have done a very high number of cord blood transplants with excellent success rates. Right now there is a cord blood unit reserved for Aaron. It is not an exact match which is why we have been hesitant to move forward more quickly. Hopefully the doctors in Cincinnati will help answer our questions and direct us in the right path.

Aaron's Foundation

Aaron is so special that he has his own foundation. The National Foundation for Transplants set up a website for him. People can make donations that go directly for his transplant and related medical expenses. We are excited about raising money for him.

http://www.transplants.org/donate/aaronwolsey