Monday, January 05, 2009

Maybe she is just getting longer

We are back from Maine and happy to be on home turf again. Traveling is much easier than it used to be but the home court advantage is always a good thing and not live out of a bag and a box of medical supplies.

It was great to see everyone and let Ellie play with her cousins, try skating on very big borrowed skates and go sledding again on a nice toddler sized hill.

See if you can spot the 'Oh, shit' moment in this video when I realized that I might have just flung my daughter into the woods....

'Daddy, do it again!'

We had a big relief Monday morning when we finally got home to the scale and had an Ellie weigh-in. Today she weighed in 14.18 kg (31.2 lbs) , more or less exactly what she was the day after Christmas and within a few grams of where she was when she went in for her study a few weeks ago and where she was when she came off TPN a little over a month ago. We were sure with the way that her pants were falling down around her ankles that she was shedding weight but apparently it is still there. Maybe just rearranged itself. Or maybe her body is following along with the growth of her feet and stretching out on a daily basis. But considering the current cold, the very active month that we have had and the other mysterious ills of her ut, holding her weight is a great thing.

So no call to Childrens to talk about getting on the TPN train again. The case of omegaven is in the cupboard but we'd rather leave it there if we can.

Speaking of which, we spent about 5 hours with folks from the Boston Globe Monday telling them the condensed version of the Ellie story and giving them a crash course on short gut, TPN and all things medical around here. It looks like they think the omegaven story is as great as we do and are working on a way to get it into the paper around here again.

we'll post a link if it runs.

Back to my favorite chair for some quality time while Ellie catches up on her sleep after four very busy weeks.

1 comment:

Anonymous said...

it ran today. here is the link:

i wish you and all the little ones and their families all the best. you have been blessed by a little angel !!!