Aaron's Hyper IgM Journey

Thursday, April 26, 2012


Let's start with the good news.  Aaron's liver numbers are getting a lot better and he will likely have a full recovery for his liver.  I expect it will be several weeks to months before a full recovery occurs since his liver problems are probably caused by medications.  The doctors have also lowered his steroids twice now without his GVH flaring up.  The sooner we can get Aaron off the steroids and cyclosporine the better!!!

Many have asked about Aaron's hair growth (and I don't mean on top of his head).  This is due to cyclosporine and will go away after the medication has been discontinued.  This will be the last medication to be discontinued so the hair will probably be around for a long time!  His swelling is due to the steroids.  Some of it is water retention and some is actual weight gain.  This will improve as the steroids are lowered.

Now the not so great news.  Aaron has been raging for three days straight.  In the past, he raged because of the steroids.  We don't know what is causing his rages now since he has been on lowered steroid levels.  Aaron had a full body MRI today to see if he has any microfractures of his bones that could be causing pain.  We haven't gotten the results yet.  He also had a chest x-ray to see why he has been coughing.

His kidneys are not worse than before.  If anything they might be slightly better.  Since the steroids have been lowered, Aaron's blood pressure has come down a bit.  However, he is still on two blood pressure medications.  The doctors also had to add potassium, magnesium and calcium supplements as well as IV fluids since his kidneys are not regulating his electrolytes well enough right now.

I am hopeful Aaron can still make a complete recovery, but we are taking baby steps.

On a lighter note, my husband is cracking me up watching JT videos and saying that guy is good and long as he isn't in any stupid boy band.

Tuesday, April 24, 2012

Happy Anniversary

                                          Aaron and Mommy toasting.
                                            My handsome boys!!
                                         Aaron saying "I want to eat!"

Our anniversary was yesterday, but I went home to work.  I got back today.  Aaron was in a bad mood and then developed a cough.  He got better towards the evening and he helped us celebrate our 4 year anniversary.  We had fun and Aaron loved the sparkling grape juice with pomegranate juice.

Michael and I have had one crazy year after another.  Every year gets more and more crazy.  Thankfully through the ups and downs, we are still rolling with the punches.

Aaron's health has remained about the same.  No big changes for the better or the worse.  The doctors are lowering his steroids slowly and he is doing well with that.

Tuesday, April 17, 2012

So much has happened

Day +100 came and went. We could have been packing up the car and driving home, but that won't happen for a long time. My Dad came to visit Saturday night but ended up with food poisoning and had to stay in a hotel. We were sad that he was so close but we couldn't spend time with him. Monday we went to the clinic in the morning. Aaron's kidney levels are very slightly better and the BMT doctors are hopeful they will continue to improve. Later that day Aaron threw up all over his bed and our room at RMH. He spent the night at the hospital for observation. The doctors believe he got it from my dad. He is better now and we are back in our room. This is a positive sign that Aaron was able to recover so quickly.

Wednesday, April 11, 2012

Blindsided (Day+99)

So much for not worrying anymore. We found out Aaron has stage 3 kidney disease and his kidneys only work 50-60% of normal. He also may have developed TMA, a condition that causes inflammation of the capillaries causing red blood cells to burst and protein in the urine. This condition can range from mild to long term or quickly fatal.

I am upset because this is the first anyone has told us about any kidney problems. The doctors have known for awhile and never said anything. We had an appointment with the nephrologist who informed us. At this point I have no idea what to think. Aaron could use lots of prayers right now. His body needs to heal.
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Monday, April 9, 2012


We celebrated Easter a few days early while Michael was home.  Aaron enjoyed his Easter egg hunt and it was good practice for him getting up and down off the ground (that is very hard for him to do).  He got a new Curious George movie from the Easter Bunny and he loves it.  He often asks "What is George doing?"  Then he responds to his own question "George is a curious monkey."

This is the bottom of the hill in the parking lot.  Mike has been working with Aaron to build up his strength.  They walk up and down the hill two times a day.  On Easter Sunday when Mike was gone, Aaron walked to the closet to get his shoes and asked to go walk on the hill. 

We spent part of Easter praying and reflecting on what Jesus has done for our lives.  After this reflection, I no longer worry about Aaron.  I will continue to protect him as we have for nearly two years now, but I no longer carry the burden of worry.  Aaron is going to be just fine!

Friday, April 6, 2012

Gaining Independence

Aaron is becoming more independent. Yay! He fell asleep all by himself tonight. I didn't even have to be in the room for him to sleep. I am so thankful that the days are gone when he slept on top of me. He is getting so large that I can't breathe with him laying on me anymore. He still won't feed himself and we continue to work on that. The big news... He went poo poo in the potty two days in a row. We are starting to potty train this week.

The doctor lowered Aaron's steroids and his GVH is coming back. We will see him again Wednesday and see what he says.

I stopped counting the days until we go home. I have accepted that this will be home for quite some time.

- Posted using BlogPress from my iPhone

Wednesday, April 4, 2012

No News is Good News!!!

I have been scarce.  We are settling into a nice routine.  We go to the mall in the morning with the mall walkers and go to see trains in the afternoon.  Our lives are pretty boring and routine, but I am very happy.  Aaron's progress is stable.  The doctor lowered his steroid again today.  We will wait and see how the immune system responds and pray for the GVH to not return.  Aaron is getting stronger.  There is a hill in the parking lot.  Micheal makes him walk up and down it at least once a day. 

I went home to work this past weekend.  It will be my last time to work in that store.  They have replaced my position.  I am happy and sad about it.  There is a lot less stress about trying to keep my job, but I really liked working at that store.  I will remain a Publix employee as long as I work every 30 days.  God has something bigger in store for me.  I will focus on Aaron right now.