The last few days have passed like a whirlwind. On Tuesday Anaya had a personal healing blessing done by Tibetan Zasup Rinpoche. It was beautiful and Anaya really seemed to enjoy listening to the chanting.
On wednesday we went to the airport to fly to Calgary but our flight was cancelled due to visibility problems in Castlegar.
This morning I'm trying to re-book our tickets so that we can get to the appt in Calgary this afternoon. I'm trying not to be stressed...
Through all the things swirling around us, Anaya is doing well. She seems stable and comfortable. Hopefully we will get to Calgary today.
Really hope you guys manage to get here for this afternoon!
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Thinking about you and hope you get to your appointment.
ReplyDeletehoping your not too frusterated by the weather and that you guys can change your appointment easily/things go smoothly! keep going! at least all the milk will stay nice and frozen! ~heather
ReplyDeleteHi Camara!
ReplyDeleteMy name is Katie Almy and my daughter Karis also has infantile onset Krabbe. She is a vibrant 16 month old :) I was wondering if your precious Anaya has had the chance to meet Dr. Maria Escolar at University of North Carolina in Chapel Hill? She knows more about Krabbe disease than anyone in the world and has done and incredible job managing the care of our little fighters. Her passion right now is finding TREATMENT!! She is one child away from completing a study that will release the GALC enzyme for clinical trials.
Either way, I know Anaya could do nothing but benefit from meeting with Dr. Escolar. She is passionate about helping our children... and she's brilliant.
If you'd like to read more about Karis and/or her experience with Dr. Escolar, please visit her blog at www.karisalmy.com under "The Latest on Karis."
Please don't hesistate to contact me if you're interested in knowing more- or just want to chat :)