Aaron's Hyper IgM Journey

Sunday, December 28, 2014

Christmas 2014

Aaron wrote a letter to Santa asking for three lego train sets and a cat to go with his dog family.  Christmas morning he woke up and said he heard Santa while he was sleeping.  He did not want to wait one minute to open his presents.  He was dying to get his Lego train sets.  He went through his stocking tossing everything out quickly with little interest.  Then he moved on to some of the presents Santa left.  Each present he tore open quickly and with each present he showed more and more disappointment on his face.  Finally, he said "Mommy, I am tired.  I want to take a nap."  I asked if he was ok and he said no because Santa was supposed to bring his Lego set.  While he was napping, we brought the Lego train set over from Ronald McDonald House (Santa left it there for some reason).  When he woke up, he couldn't have been happier to see the Lego Train Set and his new cat (named Baby Tiger).

He slowly opened up several more gifts over the next few days.  He really enjoyed Christmas and all of his presents.  He decided Christmas is now his favorite holiday.  He is upset that Santa only brought one of the three Lego train sets.  We are learning what the words grateful and ungrateful mean.  :)

Aaron's health has gone from barely living to fantastic in three short months.  His kidney and liver numbers are so close to normal it is unbelievable.  The doctors didn't know if his kidneys would recover at all and were certain he would need dialysis long term.  Not only does he not need dialysis, his kidneys are performing better than they have since he started chemotherapy three years ago.  His liver numbers have been above 100 and usually in the 300-400s (very, very bad) for three years as well.  They are now consistently below 100. 

Aaron's energy is driving me bananas!  He has so much energy and is so full of goofiness.  Unfortunately, his bone strength and muscle strength are lagging behind.  What he needs is to get out of bed and run around.  He reminds a bit of the days he would run a mile a day and say "Mommy, I can't stop, I can't stop!"  He does get out of bed everyday.  He is working hard with physical therapy and occupational therapy.  He can walk, but still must hold on to someone's hands for stability.

He will be discharged within a week.  He needs photophoresis four days a week which will require us to stay in Cincinnati for a long time.  I am thinking we will be here 6 months to a year.  What happens after that is still unknown.

2015 will be a new adventure.  I don't think I will be posting very much more on this blog.  Although it focuses on Aaron, it was created to share the adventures of our whole family.  With all the changes in my life, I will probably just post smaller updates on Facebook.  I may start a new blog in the future, but I am not sure.  Thank you all for rooting us on during each and every "adventure" we have faced.

Tuesday, December 2, 2014

Thanksgiving Week

Aaron. He never stops amazing me. Before transplant I had the most beautiful, energetic and happy child. I couldn't believe God had blessed me with the coolest kid in the world. After transplant, I saw my child suffer from pain, fear, anxiety, eating problems, motor skill disorders and much more. I actually mourned the loss of the child I gave birth to and began to accept the new child that he had become.
In my wildest dreams, I would have never believed the impossible to happen. My Aaron, the funny, happy, energetic son has returned!!!! Aaron is happier than I have seen him in years. He makes jokes all day. He doesn't scream at the doctors anymore. In fact, he pretends baby dog has eaten chocolate and he has the dog throw up on the doctors and nurses instead. He is having fun with OT and PT and anyone who comes to play with him. He never would interact with people before unless to scream at them.

Aaron still requires oxygen at night. We are going to start trying to wean his tpn. He drinks a ton but doesn't eat enough. We have speech therapy helping with that. He is also not strong enough yet to walk much. His skin looks better than ever. In fact, overall, he hasn't looked this good since transplant. We will definitely be in the hospital for Christmas. Aaron loves the hospital, so he won't mind a bit.

We also had Serena for a week. I absolutely love that girl!!! She and Aaron had tons of fun. They made snowflakes and snowmen. They sang songs. Serena really enjoyed music therapy and made up all the songs during their one hour sessions. Her creativity blows me away. She even helped Aaron with his school work.

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