Back on Nplate and a trip to Angel Fire

In my last Hunter update at the beginning of July, his platelets were at the top of the normal range at 400.  His shot was discontinued, and the plans was to see how he did on his own.  After one week his platelets were down to 199.  This drop was expected since his marrow wasn't stimulated to make extra platelets.  The next week they were 129, which is just below the normal range.  At his appointment in Houston we were told as long as he was above 100, they felt comfortable with finding out what he could do on his own.  But when the time came and after hearing we were going to Angel Fire, NM for the week his doctor wanted him to get another Nplate shot for the minimum dosage.  We were disappointed that we didn't really get the chance to find out if he could stabilize himself.  The entire process of weaning off his Prograf and getting off all his preventative medications has been put on hold because of his platelet issue.  The finish line of transplant was so close but the last three months have been steps backward.  Hunter feels fine, has responded to ITP treatment, and is down to a manageable dose of steroids so we are grateful for that.  All his other bloodwork is great!  Life has gone on with Hunter getting stronger every day:)  It just frustrating to feel like we aren't any closer to being done with transplant.

I was very excited at the response to my hundred for hunter post.  Eight other friends and family members have joined me in pledging to ride, walk, or jog 100 miles over the next 100 days.  We were blown away that anyone else would dedicate that much time.  We have the best support system!  I am very close to my original fund raising goal on my team Hanner page, and it looks like I may need set my sights a little higher.  A representative from Be the Match is coming to our neighborhood ride, so if you've been inspired to join the registry you will have a chance October 25th!  The boys and I have rode 18 miles together on our bikes.  We are enjoying spending time together being active every day.  Benton has learned to ride without training wheels, and he is proud of his new skill:)  

We've also been enjoying some R&R.  Last week was spent in the mountains of Angel Fire with Nana and G-Daddy.  Benton put his birthday golf clubs to use for the first time, we spend some time on the lake, went on a float on the Rio Grande, played on the playground, and just soaked up the cool weather.  It rained almost every day and Hunter was very happy he got to spend a morning in Cimaron canyon fly fishing.

hanging out at the playground

lessons from G-Daddy

my favorite hole at the golf course

Nana and the twins met us after for lunch

hot chocolate in our pajamas

the boys caught 11 fish on Eagles Nest Lake

shooting his bow

we also did a gentle float on the Rio Grande

the kids all wanted in until they felt how cold it was

the geese and ducks enjoyed our picnic too

my bike rides were a little prettier in the mountains

My favorite three picture of the boys make them look so old!  We are all definitely mountain people.  Thanks so much for all your continued prayers.  Hunter and I go back Friday to Houston for another checkup.  We hope to get more of a game plan on the next few months.  Hopefully that includes steps to getting rid of his rejection medicine since he's so far out from transplant!