Twinkle Toes Nora

Nora started “Twinkle Toes” ballet class a few weeks ago. This is super exciting news because firstly she’s always been a little ballerina at heart and secondly this is her very first class of any kind. Since she had never been in a structured class environment before she was a little overwhelmed at first, being distracted by watching the other little girls instead of following the teacher. But now she’s got the hang of it and has been having lots of fun in her class. :)

With the thoughts in mind of Nora’s germ exposure going to ballet class, we decided to follow the idea of other short bowel parents who have written brief letters to the other parents in the class explaining our situation and asking them to let us know if their child has been sick recently. Nora seems to have a strong, well established  immune system but with flu season upon us we decided it was best to play it safe.

Writing a letter like this is was a bit of an awkward thing for us and apparently when I handed them out to the parents at Nora’s first class my awkwardness overcame my social skills. I didn’t give any explanation while passing out our letter, or really say anything more than “can I give this to you?”. I was feeling a bit like I was handing out a sales flyer from the looks I was getting but I was hoping my weirdness was mostly in my head. Apparently not, after class Montana assured me I came across like a total weirdo and looked like I was soliciting for Amway! Oh well, we had a good laugh about it and at least the deed is done.

After hunting around online for ballet gear for toddlers at sites like BabyGenie.com and Amazon we opted to shop locally and I am glad we did. Even though this picture is a little blurry I just had to share Nora’s super excited expression when we went to the ballet store to get her slippers and outfit.

Twinkle, twinkle! :)


5 Responses to “Twinkle Toes Nora”

  1. Susan Says:

    Hi there! I am the mother of an amazing 2 1/2 year old little boy with short bowel syndrome. I came across your blog while looking for “unconventional” remedies for the chronic diarrhea associated with this disease, and have been very encouraged by the information that I have found on your page. I noticed that little Nora was not left with very much bowel in the beginning, and was wondering if you would be willing to give me a quick rundown of some of the treatments that have helped with her success? I also had 2 more specific questions about gut adaptation vs bowel transplant & your management of her med-port. My email is masonsmom@rocketmail.com. I am very grateful for any information you are willing to share with me.
    Thanks very much,
    Susan

  2. Carolyn Vernier Says:

    That is so awesome!

  3. Ian Says:

    Nora looks beautiful and happy.

  4. tripp Says:

    Nora’s so cute, you must be very proud. We recently published a story on baby who lost 90% of her intestine, I thought you and your readers could easily relate.

    http://childrenshospitalblog.org/our-patients-stories-from-russia-with-love/

  5. Michelle Says:

    It must have been such a blessing to get Nora on Omegaven! She looks amazing! I have a 6 month old baby that has the same diagnosis as Sam Oconnor and she is TPN dependent. We are from Tampa, FL and are unable to get to Boston as much as we want to right now. We talked to her Doctor in Miami about trying Omegaven and got shot down. Where in Tallahassee where you able to get it? Thank you so much for your help!
    The Carver Family



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