Aaron's Hyper IgM Journey

Wednesday, February 29, 2012

Lots of Laughter






Aaron is doing GREAT!!!
Sunday, Aaron said "I want to run". I have been praying to hear those words again. And he did run. Up and down the hall three times! His running is mostly stomping his feet and swinging his arms and moving no faster than he walks, but it is the cutest thing.
Sunday, he said he wants to dance I turned on music but he didn't dance much.
Monday, Michael retuned from work and we have spent a few days as a family.
Aaron's liver numbers are not better or worse. However, the doctors say the liver is usually the last to resolve. They are still watching and waiting. They are talking about possible discharge in the next week or so.
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Sunday, February 26, 2012

Green Craft





Child life came in and asked we we wanted anything. Aaron requested a green craft. This is what we did today. We also painted, read tons of books and Aaron walked up and down the long hall all by himself!!!

And did I mention... He eats all day long. Who would have thought my son, who rather do anything but eat, could have such an appetite. That would explain him going from a 3T to a 5T in two months.

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We Miss You Sissy







This is Serena's last soccer game of the season. Michael was able to go visit her and watch the super star soccer player in action. We miss this girl so much. She brings laughter and joy with her everywhere.

Saturday, February 25, 2012

Jumping For Cherries




What a great day we had yesterday. Aaron got out of bed and played for a couple of hours. He ate better than he has in months. He wanted cherries. He stood up and kept jumping with excitement each time he would get a cherry. He ate 20 of them!

He is on an NG tube for feeding. They cut that back to only twelve hours a day since he is eating well. Hopefully he continues to eat well and they can take it out.

Aaron's liver enzymes went down slightly. Too early to tell if it is meaningful but I am hopeful.

The hospital reached an all time record high of hospital admissions. They had to open the same day surgery center and ER for overnight beds. The BMT unit is also over full. They moved more patients to our new unit and they are discharging patients as soon as they can. We will not be leaving anytime soon.

Another thing, Aaron is getting his old color back. He has been shedding the old GVH skin and new soft normal skin is coming in.


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Friday, February 24, 2012

Looking Good

Aaron is looking better and better everyday! He is playing more and walking more with each day.


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Thursday, February 23, 2012

Liver GVHD

I went home for four days to work and check on the house.  I left Michael with his hands full.  Because Aaron's central line broke, he had a temporary IV in his hand.  The IV had popped out and Mike found Aaron in a pool of his own blood Thursday night.  He said it was something out of a horror movie.  Even his nurse shreiked in terror.  Thankfully that resolved easily and the next day Aaron had a new central line placed.  The major risk of the surgery was a possible infection.  However, enough days have passed that an infection would have likely shown up by now.

Then  Saturday there was a horrible smell of sewage coming from the bathroom in Aaron's room.  Mike had to pack up everything and change rooms.  There were no rooms available on the BMT unit.  They had to move to the overflow unit on the 6th floor.  This turns out to be a much nicer area and we are happy here!  The nurses are nicer, the floor is quieter and we have three windows to look outside.  We will stay here as long as they will let us.

Sunday and Monday were good.  Aaron was in a good mood and played with Michael and walked a lot.  When I got back Tuesday, I was pleasantly surprised to see a huge improvement in Aaron's walking and stability. 

Unfortunately, it is not all good news to report.  Aaron's skin is looking better and better every day.  In fact, the doctor said he is no longer concerned about his skin.  The rash is resolving.  They are concerned with Aaron's liver.  His liver enzymes continue to go up and up.  The doctors are concerned about the liver.  They increased his steroids again and it does not seem to be making a difference in his liver numbers.  They have also tried the t-cell depletion without success.  They have more treatments they can try, but these treatments are not preferred.  We will see what they say today.

Friday, February 17, 2012

Successful Surgery

Aaron had his surgery today and all went well. He even ate a decent dinner. Yay! Thank you all for the prayers and words of encouragement. I believe things are only going to get better from here.