Trip Update 4-22-10

Today started off pretty early at 8 am EST in the PED's clinic. We did our basic “overview” of the last eight weeks with Nicole (Dr. Porter's nurse). Infectious Disease came up and spoke with us twice.

Still a mystery with Brisan's sinus issues but they wanted to do a few work ups that haven't been performed yet to rule out any additional possibilities from previous conclusions (maybe lack of???). After a long day we finally were able to get a nap inn and polish off the evening eating some Chinese food!

Tomorrow starts off at 8 am EST again to do a tanker size blood draw. Hopefully we can get through that without a hitch. We should be able to meet some other Niemann-Pick Type C patients tomorrow as they are having a noon lunch/ meeting here at the Children's Inn.

Jennifer & Parker at aiport 4-21-10

Parker thinking at airport 4-21-10

Brisan eating dinner 4-22-10

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  • Grammy Carnes

    We keep praying that they will resolve the sinus polyps
    and that eye that is affected.
    Duncan is o.k……I showed him your pictures and he
    smiled real big to each one. He said Mama and something
    for each picture of Brisan and Parker..I don’t speak very good Duncanese but it sounded like their names…
    anyway, he recognized them .
    We love you all
    Grammy Carnes

  • I am praying for all of you. You are truly amazing. Much love from KCMO, Nancy Roberts PVBC.

  • Thank you Nancy!!!!!!!!!!!!!! 🙂

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