Aaron's Hyper IgM Journey

Monday, October 31, 2011

Halloween Fun

Fireman Wolsey ready to fill his pumpkin with candy. We allowed him to visit Aidan's house.

Aaron getting candy from Batman, Batwoman, and Robin. He was not shy in asking for candy.

Granny Carol tried to hold Aaron back. He kept running and running and running. Maybe he was afraid someone would take his candy.

After several runs back and forth down the neighborhood, I was wiped out. Granny Carol finally got a hold of him and got him to stay still for a minute. Once she let go, he was off again in the other direction. He only stopped if his candy flew out of his bucket. He would pick it up and keep running.

Friday, October 28, 2011

New Timeline

Nov 28th - Start pretransplant testing
Dec 20th - Admit to hospital
Dec 21st - Busulfan pharmacokinetics (chemotherapy test)
Dec 24th - Start preparative regimen (begin chemo)
Jan 3rd - Transplant

Saturday, October 22, 2011

Boots and Barbie

Aaron turned two and Serena will be eight in a couple of weeks. We had a combined party for the two of them. Aaron enjoyed his Boots cake and balloon. Serena loved the Barbie balloon, tiara, and cupcake stand. We had a great time. Aaron's favorite gifts were everything to do with a train. Serena loved her baby doll that she could feed and then change her diaper. We played pin the bracelet on Dora. I think Aunt Katie won... congrats!!! The rest of us could use more practice. We allowed Serena and Aidan to come to the house for the party. It was really nice to have the family over. Aaron and Serena are good about wearing the masks. I am thankful. So far we are all still healthy and have lots of fun new toys to play with. Thank you to all of those who gave him warm clothes. They will come in handy very soon.

Thursday, October 20, 2011

Eye surgery

The surgery went well. We woke up at 4:30 to be at the hospital by 5:30. We checked him in. The man checking us in kept sneezing and blowing his nose. I totally freaked out on him. I had to touch all these electronic pens after he did. I finally told him that Aaron has no immune system and can't be around someone sick. He said it was just allergies. Hmmm... not buying that story. Anyhow, after that, everything was great! The nurses were amazing and took very good care of Aaron. The surgery took one and a half hours. The doctor told me that everything went well and to come see him in a week. I sat with Aaron until he woke up. He never fussed. Once we got home, he was ready to play with his trains right away. He was fussy the next morning, but I think it is more from being tired than anything.

Wednesday, October 19, 2011

Bounce House Fun

We got a bounce house for Aaron's birthday party. However, he is getting eye surgery the day before the party and the doctor said he cannot use it for awhile after surgery. We let him play on it for awhile. At first, he was not sure what to do, but he eventually figured it out. We had a lot of fun bouncing!

Saturday, October 15, 2011


For 2 weeks Aaron has been begging for chocolate cake. He had it once in his life about 2 months ago and I guess he has never forgotten how good it tastes! Finally, today he has gotten his chocolate cake and he ate it in a matter of seconds. He LOVES cake!

Thursday, October 13, 2011

Emerging Artist

Aaron's first unassisted painting. We are calling it the green spider. What do you think?

New dates

We heard back from the donor. The donor is on board with everything and willing to work with us on dates. The transplant coordinator said I need to stop worrying so much (don't know if that is possible :) The transplant will be January 3rd. We will be leaving the week of Thanksgiving to drive to Ohio. Now we need to find some warm clothes. Maybe we will have a white Christmas.

Tuesday, October 11, 2011

Eye surgery

Aaron needs eye surgery. The transplant doctor decided it is better to go ahead with the surgery now. Aaron may not be ready for a surgery for a few years after the transplant and by then the eye problem may be worse. The eye surgery is not a big thing. They will tighten some of his muscles so the eyes focus together. However, this has pushed back his transplant a bit. We are still waiting to hear from the donor to see when he/she can reschedule. We have waited 3 weeks to hear back from the donor with no response. Praying for a positive outcome soon!