Aaron's Hyper IgM Journey

Tuesday, November 29, 2011

Our First Day in Cincinnati

Wow! What a day. We woke up, got ready and took Michael to the airport to go to work. Aaron and I stopped at the grocery store to get him some milk, water, and juice. We then headed to the hospital. The hospital is huge with several different connecting buildings. The parking garage is a maze to find the right parking area for the building you are going in to.

Our first appointment was for lab work. However, that was only 10 minutes of the 2 hour appointment. The first person who met us was the transplant financing/billing representative (they need to make sure they get their money). They said it is good that we have Michael's insurance for Aaron because mine has a lifetime maximum of one million dollars and Aaron would probably be dropped before we left the hospital. Aaron is an expensive kid, but definitely worth it.

Next we met with the transplant coordinator, Mat. He is so nice and puts up with me and my endless questions and concerns. We really like him!

Finally, Aaron had his blood drawn. They must have taken nearly 20 tubes. A little frightening, but they said it was only about an ounce of blood. Aaron fussed a bit, but overall was a tough kid. He was rewarded with 2 Thomas stickers and apple juice.

After this appointment, we went back to Ronald McDonald House (RMH) for lunch. I put Aaron down to nap. Meanwhile, I took our food to the kitchen. I ended up locking him in the room by himself. By the time I was able to get another key and into the room, 15 minutes had passed. Thankfully, he was still relaxing in bed with his blanket and pacifier (his favorite things right now).

We went back to the hospital for a pulmonary consultation which also took about 2 hours. This was an initial evaluation for the bronchoscopy with sedation that will occur next week.

When we returned to RMH, we got great news. We had been upgraded to the isolation suite. These rooms are usually given to transplant patients that require strict isolation. We are allowed to have food in these rooms and there is a second bedroom. The second bedroom is great since Aaron is used to sleeping in complete darkness by himself.

I spent 2 hours packing up our things and making several trips back and forth between rooms. Aaron hid one of his shoes and ran around the Ronald McDonald House with just socks on. Thankfully, I found it later in a suitcase. He also pushed the "help" button in the elevator and I had to explain to the Cincinnati Fire Department that all was ok. Aaron is so full of energy and unable to find an outlet. It is too cold here to let him out to run.

Monday, November 28, 2011

A Long Drive

We got a late start Saturday morning. We left around 10:30am. Once we hit the turnpike, we didn't go much faster than 15-25 mph most of the way to I75. We think the traffic was from people heading to the FL vs FSU game. The rest of the day was ok until we hit Atlanta. We got stuck in traffic while heading to the hotel. Aaron was great!! He watched his movies and didn't complain once. He did ask to get out and run so we let him run a few times. He enjoyed running in circles around the oversized cow.

Sunday was dreadful. We left Atlanta at 9am. From 9:30am on, it rained the entire day. The traffic was really bad. I think it was people heading back home from the holiday weekend. We had stretches of an hour or more going 15 mph. Aaron took his turn in the driver's seat. He discovered the horn and got a kick out of honking it whenever someone would walk by.

We got good news in the evening. The Ronald McDonald House had an available room for us. We were excited! A nice ending to our very long day.

Monday, November 21, 2011


Packing for five months. We will have to ship most of it since I won't have enough room in the car. But where to send... We will stay at the Ronald Mcdonald house but they have a wait list. We will probably stay at a hotel for a couple of weeks until we get in.

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Friday, November 18, 2011

Track practice

We went for a walk along the path in the park this morning. As soon as we got on the path, I said "go" and Aaron took off running. The man behind us said he is a real track star. I said it is college scholarship training. When I tried to put him in the stroller he would yell "I want to run" and take off running again. He must have run at least half a mile.

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Location:Cypress Grove Park

Sunday, November 13, 2011

Chasing the moon

Aaron spent twenty minutes running to catch up with the moon this morning.

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