The Return of Super Nora!

What a difference a week makes! Nora has responded extremely well to being back on TPN, she is obviously feeling much better and like herself again. In just one week she has made a tremendous turn around with her weight and energy on only 10ml/hr (she was on 20ml/hr before weaning off TPN) and her labs this week showed a big improvement. For the first two days Nora was back on TPN she slept a LOT more than usual. We felt (as well has her doctor did) that her body was just finally catching up on much needed rest now that it wasn’t having to fight for nutrition. But we were starting to get quite concerned on the second evening when she fell asleep at 6pm after taking three naps during the day. We kept thinking isn’t TPN supposed to have the opposite effect? Thankfully she awoke bright eyed and bushy tailed last Wednesday morning and hasn’t slowed down since. She is certainly keeping us on our toes chasing after her with the portable IV pump and bag. She still has a while to go before she can carry the pump in her backpack so hopefully the coiled IV tubing will be in soon. Thanks to some other SBS parents we learned of an IV line extension which expands like a telephone cord. This should give her a lot more wiggle room from having to stay so close to the pump and allow for the line to give if it is pulled.

Nora has adjusted to being back on IV’s better than expected. With having two months of freedom under her belt from tape dressings and lines we weren’t sure what to expect. She has grown up so much in these past two months. She is no longer a baby but a little girl who makes her baby dolls dance, has meow talks with the kitty cats and has pretend tea parties. Besides protesting to being tied to the IV pole in the mornings while waiting for her Omegaven to finish she has been a very good girl about not messing with her lines and port.

Here are some long overdue pictures from the past few weeks.

Cousin Marin would be proud. 🙂