Aaron's Hyper IgM Journey

Saturday, July 30, 2011

Ronald McDonald House

Serena has been asking about the Ronald McDonald House. I explained to her what it was and that we will probably stay there during Aaron's transplant. She wanted to raise money to give them. Both kids did chores around the house. I took them today for a tour of the Ronald McDonald House. The building is very nice with hotel style rooms. Each room has two beds and a bathroom. The kitchen area is huge with 6 or 7 massive refrigerators and three stoves. The place is really neat and a provided the kids great way to get involved. The lady working there gave us little houses to collect soda can tops. Too bad we don't drink very much soda. Serena threw in 2 pennies to make a wish for her and a wish for Aaron.

Friday, July 29, 2011

Surgery went well

Aaron had surgery to take out his port. We are glad to take it out. The port is a potential site for serious infection. He only used the once a month and become more of a hassle than a help.

We were all in the car by 6am heading to Tampa. We arrived just in time for the 8am check in. We should have been there earlier, but the roads are very confusing by the hospital and we ended up going in circles on one-way streets before we arrived at the parking garage. Thank goodness for the GPS!

We waited in the Surgery Registration waiting room for awhile before Aaron was called back to preop. Michael could not stay awake. Serena and Aaron were full of energy and wanted to play. Aaron and I went to the preop area where he was given a cute Tampa Bay Bucs Teddy Bear. We watched TV while 5 different nurses came by at different times and asked us the exact same questions. Later, Aaron put on his gown and was called back. I walked Aaron to the surgery area and then the nurse took him. Aaron cried and my heart sank a bit.

While Aaron was in surgery, Michael and Serena had breakfast. Serena quickly found all the fun toys and games throughout the hospital. Serena really knows how to have a good time. I waited in the surgery waiting room until the doctor came in. She said the surgery went smoothly and Aaron did well. After 30 minutes in the recovery room, I was able to go be with Aaron. He was tired and irritable, but otherwise feeling fine.

Thirty minutes later we were in the car to go home. We all took naps. Once we got home Aaron ran out of the car and into the house and ran all over house. Who would have guessed he just had surgery!

Moving forward... we were going to switch him to a subcutaneous version of his medication, but recently decided against it. Subcutaneous would be once a week. With Michael and my work schedules, we are not always home on the same day each week. Arnold Palmer Hospital's hematology/oncology department has been absolutely excellent and we feel like that is the best place for Aaron to continue his treatment. He will continue the once a month IVIG for now. Hopefully there will only be 10-11 more treatments until his transplant. I can finally say that I am looking forward to the transplant. I finally believe that Aaron will not only live, but have a normal and healthy life. It has taken me awhile to arrive at this peace, but thankfully I have. I am ready to face the transplant and have Aaron back to doing all the things other children his age are able to do. God places people in our lives that open our hearts to Him. Aaron has done that for me.

Tuesday, July 26, 2011

Reesey's Birthday

Reesey has been Aaron's nanny for 6 months now. We were excited to celebrate her birthday with her. We surprised her with a cake and flowers at 7:30am. She is soooo good to us.

Sunday, July 17, 2011

Tea Party Madness

We all dressed up and the girls did their nails. Serena made peanut butter and jelly sandwiches with hot chocolate and blueberry scones. We enjoyed a delicious and entertaining tea party! Then Serena performed "Serena's Dance" for us.

Serena reading to Aaron

Serena LOVES to read to Aaron. The trick is getting him to sit still for an entire book. Serena was successful this morning since she picked "Roadwork" to read to Aaron. He loves trucks of all kinds.

Wednesday, July 13, 2011

Last infusion!

Aaron is at the hospital getting his last IV infusion (we hope)! We spent from 8am to 2pm at the infusion suite. Since we were the first to arrive that day, we got the best suite. We were surrounded by windows. He is a real champ. The nurses are amazed that he doesn't cry or complain when they are sticking him or poking at him every so often. He is enjoying Dora, currently his favorite cartoon. We even got free Olive Garden thanks to B.A.S.E. Camp Children's Cancer Foundation. Most of the children needing infusions are cancer patients. Aaron's condition is so rare that no one in this hospital has ever seen it before.

Next month we will switch to subcutaneous infusions at home. These will be much shorter but we will do them once a week.

Sunday, July 10, 2011

Visit from Aidan

Serena and uncle Kerlan tried to have some tea, but the Aaron and Aidan crashed the party.

Saturday, July 9, 2011


Little man to the rescue!

Thursday, July 7, 2011

Trip toTampa

The trips to Tampa are getting much easier. Aaron has a lot of movies now that he enjoys watching in the car. This summer he also has his sister to play with. Daddy finally made the trip with us for the first time. We went to consult with the pediatric surgeons to remove Aaron's port. Thankfully this was a quick and easy trip. Serena enjoyed all the kids activities in the waiting room. We bring toys for Aaron since he cannot touch anything that anyone else has touched.

We got a big laugh as we pulled into the parking garage. A float full of people dressed as cows were waving at us. A big sign on the float read "Free chicken tomorrow." We realized then that is was Chic-Fil-A.

Monday, July 4, 2011

Happy 4th!

We made chewy gingerbread cookies and popped popcorn and watched the fireworks from the porch. Too bad Aaron slept right through it all. Serena and I had fun!