Thursday, August 16, 2007

A big week and Clinic

Today we had another appointment with the Short Bowel Program clinic. This is their chance to check up on Ellie, look at her plumbing, and officially monitor her weight. It also is the chance to adjust her TPN and discuss her diet.

The take home message to day is that everyone continues to be very happy with her progress. She is holding on to her spot on the 50th percentile for height and weight and is still off the charts in head circumference (because of the giant, fish oil-fueled brain that is in there).

The other big news is that our progress towards TPN independence is continuing at a fast clip.

A month ago we went to clinic and agreed to take a second night of TPN away from Ellie as an experiment to see if she would still grow without the extra nutrition of full TPN. She did grow over the last month and today we agreed to peel another night away as another month-long experiment.

This leave us with four nights of full TPN (fluids plus omegaven) and three nights of just IV fluids each week. Yes, we get to stash the IV pole every other night now and have a girl on just one small pump.

We are almost to the halfway point.

This is big for us and we hope that she continues to gain weight and height with this plan.

Another sign of her ever expanding dimensions is the fact that her cute purple Mary Jane Crocs don't fit anymore. Our stop at Whole Foods on the way home fixed this and Ellie is very happy with her new fancy treads:The last week has also been a big one for short gut. Connor and his family moved here just for Omegaven and last week they went back home because his bilirubin numbers were back to normal. He's eyes are white and his skin is a beautiful white. Also Nora in Florida just got on to Omegaven in Florida! We are keeping Nora's family in our thoughts because the first month can be scary as the usually the bili numbers go up before they go down.

And lastly, Christian, Ellie's playmate from last spring, had his ostomy reconnected last week. This means that they connected his transplanted small bowel(from last December) to his native colon. He is out of the hospital and doing great! They are hoping to return to New Jersey again next week.

We have been keeping busy here working on the new house. Here are some pictures of the our progress. First, Ellie at Home Depot, our second home. They really should call the place Home Debit.Here is one of our rooms off of the Kitchen, before......
And after.
We are not done obviously, but we are getting close. We are in the final stretch or race to the 25th when we move in.

A special thanks to Karen and Ingrid who flew in for a week of hard work, paint that just will not come off your skin and some good times sailing. The nice new blue color in the room off of the kitchen is complements of Ingrid and Claire. Here is Karen and Ellie going for a walk. We are able to complete all this work on the house because of our new wonder nurse. She is great and we know Ellie likes her because she squeals and runs to the door to greet the nurse every morning.


Anonymous said...

Wow, congratulations on the TPN decrease! VERY exciting news! Ellie continues to amaze us and give us hope for our Nora. Go Ellie, Go!

k8land said...

Hooray! Excellent stuff all around. I'm so happy to hear it! Y'all rule. Much love, Kate from CT who is currently in Seattle. :^)

the family, with love said...

Woo to the hoo (as we say) for the decrease in tpn! Love your pics and think that Ellie should be the new pin-up girl for Home Debit!

Love from Collin's family!

Anonymous said...

Congrats on your gut news! It is wonderful when you decrease the TPN! Ellie is looking so big and soooo cute!
-Your AZ fans