Aaron's Hyper IgM Journey

Tuesday, May 31, 2011

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.

Saturday, May 28, 2011

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.

Wednesday, May 25, 2011

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

I Dance

video

A real Trini boy.

Monday, May 23, 2011

Playdate




What fun these two boys had. Aidan enjoyed walking all over the house with all the moving toys. Aaron enjoyed showing off. When Aaron saw Aidan crawl, he decided to show him how he can crawl too. Can you believe Aaron started crawling everywhere. I haven't seen this kid crawl in months. I think we might have a competitive kid! Laughter filled the house and we all had a great time.

Monday, May 16, 2011

Shuttle Launch





We are so fortunate to live close to Kennedy Space Center. We drove out to the coast and parked along 528 with a clear view of the water. We saw dolphins swimming by as we waited for the shuttle to launch. Several people had the radios tuned into the commentary and we heard the count down to launch and all the checks the shuttle was doing before take off. The shuttle went off with a trail of fire behind it. How cool!!!

Saturday, May 7, 2011

A walk in the neighborhood




We like to walk around the neighborhood everyday. Aaron loves to point out all the garbage cans. I am busy running behind him and wiping his hands with alcohol wipes the whole way. He is a happy kid. He loves to be outside and enjoys the birds, airplanes, trees, and of course the garbage cans.

Friday, May 6, 2011

Mother's Day

Handsome Wolsey boys. They bought me beautiful flowers, a fun new shirt, and light bulbs to replace those burned out in the kitchen.

The drive to the coast. Aaron likes wearing his hat, but he has to lift it up to see his DVD player.

We watched the kite boarders. What a windy day... perfect for kite boarding.
The luckiest Mom in the world!!!!

Aaron loves sharks. He says "dun dun, dun dun, dun dun" whenever he sees one.

Tuesday, May 3, 2011

Godzilla



Serena came up with this name for her brother. She would hide the people in the town so he wouldn't eat them. By the time Serena left our house Aaron could say "Godzilla."