Wednesday, December 31, 2008

Skinny New Years

It has been a month off of TPN. I would love to say we are doing great and everything is pointing towards another month off, but I can't. Oh, what a month. If I had known what this month was going to be like, I would have thought twice about coming off of TPN.

So far we had 3 days of high output that settled down only to be followed by 3 days with no food (NPO) for her bowel study. Which was not fun, but hopefully we will get good results. We got home and were starting to recover from the study when we got hit with a 5 day stomach bug. Which also resulted 6 really fun hours in the ER, blood samples (everything looked good) and stool samples (She tested negative for all the big bad stomach bugs). That was a week and a half ago and she is still only able to handle a half Pedialyte and half elecare mix for her G-tube feeds. And to end the month with a bang, last night she just came down with a doozy of a head and chest cold. Good times, good times.

I am ashamed to say that this month I actually missed TPN. In the past when we had more than 2 weeks when she wasn't able to eat as much as she should, I didn't panic knowing that the TPN/Omegaven would pick up the slack. But that isn't the case any more. Now if she doesn't eat, can't eat or does not tolerate her food; she doesn't get what she needs and that meas weight loss.

We have gone from gaining a pound a month to losing a pound. She is skinny. The pants that were tight around her waist last month are now falling off. It is kinda heart breaking. I know that recovering from an invasive study, stomach bug and cold will take a while and that I should be patient and not jump to any conclusions about what this weight loss means. But it is hard to not get nervous when her clothes look like they are hanging on her.

The worst part is that I know that if this month had been a normal one, she would be doing great. So now we just wait for her to recover from this cold and then wait for her to start gaining weight again.

On the up side, she is looking great! She is charming everyone's socks off up here in Maine and up to her same old tricks. She is very chatty and loves to have long talks, and loves to play hide and seek. Her new favorite obsession is counting all 14 steps of the stair case going up and down each time. She is having a blast playing with her cousins and her grand parents.

Gib and I are looking forward to new year with the possibility of some weight gain, no TPN forever, a reconnection surgery, and Ellie starting pre-school. We wish you all a very happy New Years.

I leave you with a video of Ellie unwrapping her favorite Christmas present.

Happy New Years!!


Anonymous said...

OMG! That was too CUTE!!

And isn't it great when they are able to start holding conversations. The girl I babysit started talking more a few months back. Great fun!

Hope Ellie gets back on track soon, and test results are good. Happy New Year!

Amanda H.

PsychMamma said...

I know that frustration so, so well. Feeling for you all. I hate when one step forward leads to two steps back, and the hanging, droopy clothes always make me sad and worried. Hang in there! Feel better soon, Ellie!

That video was adorable.

Happy New Year

Stephany said...

Handles, who needs a handle?? She is such a ham - what a great gift! Sorry to hear things have stalled right now with all of the bugs, hoping things get back on track soon! Happy New Year!

Anonymous said...

It is the no TPN roller coaster! When Connor came off of TPN, he had a bad bout of his colitis and lost a lot of weight. I really questioned whether he was ready, but he pulled through! I know Ellie can pull through this dip too. Hang in there.
The Maruskas

Unknown said...

I just finished reading the Globe article. It moved me to watch her open her favorite present and exhibit such a resiliant spirit. Such a typical little girl at Christmas. I hope that the support of family and the experts at Children's will continue to contribute to the success you have experienced so far. God bless you and your family. erin