Maybe next year

Last week the Oley Foundation held its annual conference. For those of you that are unfamiliar with Oley, it is a wonderful non-profit organization for people who have to rely on TPN and enteral feeding for nutrition. They fill a great need providing medical information and emotional support to people in situations like Nora’s and their families. The annual conference brings together patients from all around the country to learn new information and meet others living with similar conditions. This year’s conference was held in St. Petersburg, FL, still a bit away from us (4.5hrs) but a lot closer than where some of the other conferences have been held, like CA and NY.

We really wanted to get Nora to the conference this year and knowing that her fellow short bowel cyber friends Ellie and Bo were going to be there made us want to have Nora there even more so. For Nora to have met them in person would have been awesome and very emotionally healing (maybe more for us than her at this point). Especially since Nora said “he’s just like me” after watching a video of Bo with his coiled TPN tubing. Ugh, talk about tugging at her mommy’s heartstrings. So making the decision not to go based on Nora’s bad traveling history was a very hard one but ended up being the wise choice. Nora came down with a bad summer cold and fever the day the conference started. Had we been out of town when that happened it would have been awful. So we’re setting our sights on next year’s conference in hopes that Nora will be a much better traveler by then.

Nora is all better from her cold besides from a lingering runny nose and cough and thankfully she weathered it much better than I did. I ended up getting sick the day after Nora and ran fever for days instead of only one like she did. I had not been that sick in a long time. I’m glad it hit me harder than Nora showing that her little immune system is in better shape than mine these days. Very good news for Nora and lesson learned for her mommy to start taking better care of myself.

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Hello Mr. Duck, I can outlast you in the game of chicken any day………

Even though out of town adventures aren’t in Nora’s favor just yet thankfully we have our trusty ducks to visit at Lake Ella that are always up for some fun. :)

Other than Nora catching a cold she has been steadily progressing upwards since going back on TPN. She’s up to her usual tricks and advancing speedily in her developmental progress. Just like when she started walking after never really crawling much, she never showed much interest in sippy cups but she is all about drinking from “big girl” cups and mastered how to drink out of them without spilling it in a very short period of time.

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We’ve been trying to get more creative with Nora’s diet lately so she doesn’t always feel like she has to eat differently. Pizza is a frequent meal of ours, probably a little too frequent, but none of the ingredients pizza is made with Nora can have….no wheat crust, no cow’s cheese and no acidic tomato sauce. So Nora’s pizza is made with either rice or corn crust, goat cheese and baby food carrots in replace of tomato sauce (sounds a little gross but it’s actually very similar tasting to regular pizza). Nora knows no different and loves it. Ultimately Montana and I want to get on the Nora diet so we can always eat the same things together as a family and besides, Nora’s diet is much healthier than ours anyways.

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Now that’s amore’!

I finally got daring and cooked Nora some fish, fresh flounder, which is a very mild, flaky fish. Trying new meats with Nora always makes me a bit nervous but she loves flounder and thankfully her digestive system likes it too! We’ve yet to try any red meats with her yet since they are harder for any digestive system to digest. I think we’ll just stick with chicken, turkey and try new kinds of fish for now and keep trying to expand her diet in other areas.

3 Responses to “Maybe next year”

  1. Anonymous Says:

    Wow! Nora’s hair is getting long and thicker! So cute!! Glad everyone at your house is feeling better :)
    Love,
    Aunt Brenda

  2. Aunt Jenn Says:

    Sorry to hear you girls have been sick but sounds like your mommy intuition was right on target about foregoing the trip this year. Do you know where the conference will be next year so you can start making plans? Now, more importantly, can you tell me where my ‘little’ niece went?? She is looking much too much like a big girl these days for her Aunt Jenn! Hugs and smooches to you all!

  3. Ian Says:

    She’s a tough little cookie. But then you already knew that.



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