Aaron's Hyper IgM Journey

Thursday, July 26, 2012


Aaron has made huge strides with his physical therapy and occupational therapy.  When he first started outpatient therapy, he would sit in my lap and cry.  He would barely move and could hardly walk.  Now he runs all over the room and kicks balls.  I am so proud of this kid!
Making music with his toes
Swinging with Ms. Beth
Walking the balance beam
Riding the tricycle with Ms. Abbey

Climbing up stairs is very, very hard for Aaron.  His reward is getting to go down the slide.

Aaron had to sit and stand from this chair 10 times.  He loves the red chair.

Wednesday, July 25, 2012

Our bags are packed but not going home

We were packed, boxes shipped and ready to go home. Yesterday, we got the news that we are not being released after all. Aaron's white blood cells and neutraphils have been plummeting for several weeks. The doctor told us two weeks ago that he will treat it intermittently with a stimulating drug as needed until the new immune system gets stronger and works itself out. Yesterday, out of nowhere the doctor changes his mind and wants to do more lab values to come up with a schedule for the stimulating drug. This way we do not have to go in to the hospital every other day and check on the labs. This is a really great idea. However, it could have been done weeks ago. Hmmm... We have been so patient, but this last ordeal has made me want to scream.

Things have been a little tough lately. Two amazing Moms lost their beautiful daughters last week. Today, I was walking into my room and my neighbor has her daughter in a wheelchair. The Mom is on the phone trying to call for help as the daughter is throwing up blood over and over. All I can think is I have to get away quick because this could put Aaron at a HUGE risk of all kinds of issues. I felt like a jerk not helping this poor Mom. I did call the front desk and got a manager up to her right away.

We also got a notice in our box that Whooping Cough is on all time high levels for children at the hospital. This is super contagious and I have definitely heard several kids coughing at RMH lately. We don't feel like we are providing Aaron with a safe environment right now. We need to take him home.

I had to go buy Aaron some toys and puzzles. Poor kid. Everything was packed up and shipped home. We have been talking to him a lot about going home and I am surprised how much he remembers. He remembers his toy train table (of course) and his slide with the red tunnel and planes in his room.

The doctor said we can leave Friday, but with our schedules, we won't be able to leave here until next Wednesday. Fingers crossed.

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Friday, July 20, 2012

Better than ever

We are counting the days til we go home (5 days)!  I am trying to pack, but that is very hard with a two year old following around at my heels all day.  We will ship most things back home and pack the car with the rest.

Serena left to go back to her Mom's on Thursday.  We miss her.  I was surprised at how bossy Aaron became with her here.  He tried to tell her what to do all the time and he would get mad when she didn't listen.  They both need to learn to share.  The visit was tons of fun. 

Aaron's health is as good as we could hope for.  Liver and kidney numbers are still slightly abnormal but within a range that we do not worry too much.  The white blood cells are still pretty abnormal, but we are told that those cells will come in eventually. 

He is almost off the steroids.  As the steroid dose is decreased, his personality gets better and better.  He finally sleeps on his own again without screaming.  Sleeping is still a problem though.  He is on IV fluids to regulate his electrolytes and I have to change his diaper every two hours.  This wakes him up and then he wants me to stay with him.  I am not getting enough sleep at all. 

His hair is starting to look good.  He still has some bald spots. Aaron's face is thinning a little.  He has only lost one pound and really needs to lose a few more.  They say the weight will come off slowly.

We have gone from watching trains to chasing trains.  We go to our normal train spot.  Once we see a train we drive faster than the train to other spots to see it again.  We even found a train yard that Aaron loves.  Aaron is going to miss his trains when we get back to Orlando. 

Wednesday, July 11, 2012

Two Weeks and Overjoyed

I can hardly believe the news. The doctor says we can go home two weeks from today!!! I feel like I was just told I won a million dollars.

I can't wait to go home and get back to our old lives (still not normal lives). I have been talking to my job about starting to work again. Please pray for us that we can find a good nanny for Aaron so that I can go back to work. We need someone we can trust to look after Aaron and give him his twelve medications on time.

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Monday, July 9, 2012

6 months, 7 months... who's counting

Aaron dressed like a construction worker

It has been 6 months since Aaron's transplant and we have been in Ohio over 7 months now. Our transplant team is making preparations for us to come home. They have to find a doctor to oversee Aaron locally and set up home health care. Aaron's doctor in Cincinnati will still call the shots on Aaron's care until Aaron is probably 30 years old. We will be heading back for follow ups frequently.

Aaron is still doing ok. His personality and energy are better than ever. He is a happy boy who is obsessed with trains. He tells me things like "Mommy diesel electric locomotives don't have coal bunkers because they are not steam engines." He asks all kinds of questions I cannot answer. I just bought him a book for adults that explains about how all types of trains operate so that I can answer his questions. He will love it.

Aaron's liver numbers are up and down but so close to normal that I do not worry. His kidney numbers are up and down but on the road to recovery in the distant future. He will never regain his original kidney function. However, his kidneys should achieve a near normal level without any long term complications.

Our latest concern is his neutrophil and WBC counts are bottoming out. He was nearly hospitalized last week for this. They gave him gcsf which helped his numbers increase artificially but will not solve the underlying problem. The doctors are unsure why this is happening and we will undergo yet another round of watch and wait.

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