Saturday, April 20, 2013

Stephen's Run

For all of you athletes in Albuquerque:

I've been meaning to post this for a while, since it's obviously coming up here pretty soon.  We have mentioned Stephen and his family before, as they have been a great support to us.  Stephen was also diagnosed at UNMH (in Oct 2011) just a few months before Emmett was and sadly passed away a year ago.  For the run this year, they have chosen to help Emmett which is very sweet. We also think this is a great way to honor and remember Stephen.  We continue to hear what an amazing little boy Stephen was and feel that this event captured his personality and shows a lot of moral support for his family.  Last year's run was said to be "... filled with so much compassion, hope, faith and love, and ...if we all come together once again it will be yet another moment and day in our lives we will never forget!"  We hope to be there next year for this!

For more info, check out the Facebook page here

Wednesday, April 17, 2013

Emmett has a new favorite truck!

      Last Monday we found this in our driveway! The ice cream man (Mo) said that he had been in the neighborhood over the weekend when a man in a truck waved him down and asked him to follow him to this house. Unfortunately, the little boy they were looking for was in the hospital, but he said 'You can bet on my life I'll come back when he's home!' The ice cream man said someone had taken care of Emmett and that he could pick out any 3 ice creams he wanted! (This has Sean written all over it ;)
      Well, Emmett, before this day, had never seen an ice cream truck, so he didn't quite get it. The ice cream man made some suggestions and Emmett pointed to colors he liked. By ice cream #3, he caught on that whatever he pointed to, the man handed to him and he really started getting into it! But he'd already had his count and was still pointing to a Ninja Turtle one; Mo insisted he could have that one, too. Emmett actually ended up being very excited about this one! Mo was so nice and very concerned about Emmett and his condition and shared his experiences that his family has had with cancer and offered us his hope.
The Ninja Turtle was the first one he wanted open and when he saw it, he kept saying 'like that one!' and pointing to the picture on the truck.  He was SO excited that it was just like the picture on the truck.  It made his day!
Here he is with all his spoils
      I assume that most of you know that Emmett hasn't really eaten in a year now, but then I realize I don't think we've ever mentioned that so I assume wrongly.  Ever since his first round of chemo at the beginning of April last year, he had mucositis (essentially canker sores all the way down your GI tract) afterwards so badly, plus whatever loss of appetite comes with chemo anyways, that he didn't eat for an entire week.  Once his counts had recovered and the mucositis was gone, they put in his NG tube and we have pretty much relied on that completely for all his nutrition and oral meds.  He still gets excited about food and we keep him exposed to it and he'll sit down at meals for a minute or 2 and play with food, but not much goes in.  He'll swallow liquids, but hasn't really swallowed anything else more solid than a bite of applesauce.  You can tell how well he feels depending on how excited he gets about food.  I think it was in the fall when everything was up in the air that he went a little big longer (a week or 2 more) than usual without chemo and he was the most excited about eating as we'd ever seen.  He still didn't swallow anything, but he'd take bites and keep it in his mouth (and we always have an empty bowl or napkin close by because then he spits it back out after a minute).  I don't know if I'd want to swallow anything either if I had a tube going down my throat.  So I explain all that because this little video from last Monday is a pretty big deal that he was eating a popsicle!  (I cut it short, but he licked quite a bit of it!)
He must still be feeling good and this paved the way, because since then, he has eaten 2-3 cheetos and actually swallowed them!  He coughed a bit when he tried to swallow them, but they went down (and didn't come back up).  YAY!  He has 2 more of his ice creams in the freezer that he's excited to eat this week.

What a happy day when Emmett realized trucks are even cooler than he thought-no one ever told him they are full of ice cream! 
Thanks again to our friend that never forgets Emmett!