Day +40

We lived vicariously through others this Memorial Day weekend.  We loved seeing pictures and reading about friends and family enjoying the outdoors.  Cole, Janet and I were able to enjoy our own indoor BBQ (trying not to set off the fire alarm) and make the most of the long weekend inside our temporary apartment playing games and watching movies.  The entire weekend, all I could do was give thanks that we were not in the hospital and that Cole has remained healthy.  My mind and heart remain with those families who are not as fortunate.  Now day +40 post transplant, I'm amazed how fast it's going and that we're almost half way to the magical day +100.

We also remain very aware how quickly it could all change.  We can't get too far ahead of ourselves and must remain diligent in our cleaning and daily medication routines.  It's easy to get distracted and want to take shortcuts, but a long road still lies ahead. 

90% of all children released from the hospital are re-admitted.  Cole remains focused on not being one of them.  He takes the stairs when going to the hospital, washes his hands constantly, reminds us to do the same, and takes his medicine as directed. 

The doctors are talking about reducing his steroids as well as some of his other medications.  Already, we have been able to take him off some of his mouth care medications.  Cole did a happy dance as we threw away these meds since they made him gag (even with grape flavored syrup) three times every day.

Last weekend, I was able to go home to spend some time with the two older kids.  I opened the pool, watched them play soccer and took them to the Yankee's game.  Thanks to a good friend, we ran into Mark Sanchez in the Legends Suite before the game.  Mark was gracious enough to pose for a picture and the kids couldn't have been happier.  It was also bat day, which rounded out a weekend that I will never forget.

My in-laws were able to get a slight rest and go home to Boston for the night.  It's a whirlwind being home jumping back in to schedules and getting the housework done, but it was great to see the kids.  Janet's sister came up to Cincinnati for a few days while I was home.  She was fresh meat for Cole to punch and play with.

On a side note, Cole's doctor is fascinated by his hair.  She says that she believes shimmery hair is one of the indicators of HLH.  Anyone who has met Cole, knows that his hair is the definition of shimmery.  Apparently Cole's hair has a unique make up - with alternating shimmery follicles and normal ones.  Even his remaining wispy hairs are shimmery.

The medicine continues to change Cole's body - from behind, he looks like a 90 year old man - pudgy and bald.  From the front - he looks like a caveman.  The steroids have created a dark uni brow, puffy cheeks and a fuzzy beard.  But his smile remains large, his attitude is great and he remains focused.