Tuesday, February 25, 2014

2 years!!!!

2 years ago today (Friday Feb 24, 2012) Emmett was in his first surgery, the tumor in his body just being discovered, our life already changed, not knowing yet if it was cancer nor what lay ahead.  Here we are, two entire years later!  The fact that Emmett is still with us is a huge miracle in and of itself and we are indebted to everyone for all the prayers and love and support.  We can't thank you each enough.  On top of that, the fact that we have had so many good days with him in the past 2 years is just as big of a miracle!

(Sorry for the little break...although, of course, you have no idea that there was one.  Although it's bedtime, we just realized we didn't really celebrate today, so we took Emmett to his favorite ice cream place!  Not because he loves ice cream. In fact, he usually eats none of it, but it's one of the self serve frozen yogurt new trendy places, and he loves 'self serving' you could say ;)
here we are out on our date


We got back home to Albuquerque right as the holidays hit and kept busy and distracted with that.  After seeing our pediatrician here, it has taken a while to get into all the doctors and therapists that he was referred to.  We are glad to be getting lots of therapy and be hopefully making progress and moving forward.  For the past 6 weeks it seems we have had about one appointment a day during the week.  We have a break now and then, but that is keeping us pretty busy. Some are an hour or 2, but some end up taking all day.

Emmett LOVES therapy!  He's made lots of friends at the rehab clinic.  He gave all the receptionists plus all his therapists Valentines.  He randomly told me very happily a few nights ago that he loves "all his friends" there.  (Some day he will have normal friends his age...I hope.  But for now, he still loves doctors, nurses, Child Life specialists, therapists....and lion) Emmett is currently working with Occupational Therapists & Physical Therapists for his left sided weaknesses and Speech/Language Pathologists for help with learning to eat again.  With the end of treatment, I thought I was being realistic-& maybe even generous-by thinking it would take about 6 months to get him eating again on his own (he still has his NG tube which we give him formula through at night).  We met with a nutritionist for the first time last week, who specializes in peds hem/onc who said she's seen a kid take 4 years to learn to eat! Wowsers!  Emmett's making progress here and there, but this is probably the biggest thing we're working on right now.  The nutritionist said that chemo can affect taste buds for a LONG time afterwards in lots of different ways and as I talked about Emmett first getting the NG tube at 18 months or so, she pointed out that this means he missed major developmental milestones with eating between 18-24 months and that explains some of the issues he has with eating.  We are grateful for modern medicine because his NG tube has kept him alive through treatment and beyond, but we will be glad when the day comes that he is self sufficient again! 

Emmett's doing awesome.  He's growing a shag rug up on top and talks about facial hair all the time.  He got his first haircut over Christmas by a good family friend, but it was only long enough to really trim around the edges.  Micah just gave him his first real haircut on Monday with buzzers and scissors.  That was an adventure!

Other than that, we have just been having a blast, making the most of every day.  We have spent the last 3 weekends up in the mountains, all pretty much last minute.  We've done winter camping, sledding, visiting family and friends, hiking, harmonica playing, finger painting, going to story time, reading books, riding his jeep, swimming, talking talking talking (he has been known to ask us to be quiet so he can talk)....  We're loving being home, loving that Emmett is here with us and loving making life memorable!

 ...and he's into stuffed animals lately.  He never has been before, but now he loves collecting them on his bed.  He told me a few weeks ago "It hurts your belly to sleep on them" and asks us to "make a pocket" in the animals so he can lay down in his own bed.



 We will try to post more pictures later, but I wanted to get this up before the actual anniversary has passed and I've only got a few minutes before I hit that deadline.