After a long night of coughing (which by the way is good we like coughing its great for her lungs) mom, dad and Lily had a quieter day. There were visits from doctors, xray technicians, physical therapists, an acupuncturist and one furry four legged friend from the CHOC dog therapy group. Her sister Charlotte was able to come by and snuggle with mom and dad and hold big sisters hand. We are now almost into Day 10 which is so hard for us to wrap our heads around. For those of you who have experienced an extended stay in a hospital you probably remember how easy it is to lose all track of space and time. I still get lost and take a wrong turn from time to time myself but just like Lily and her family we are beginning to acclimate to the new normal. Although there is nothing that feels normal about it. I have found a few more resources if you are interested in learning more about CPVT or how you can help out.
For more information on Lily’s condition CPVT please click here. Take a look at the quick assessment form to find out if your child is at risk of sudden death due to CPVT. 1 in 10,000 have CPVT. To send Lily an email click here (they deliver them daily M-Th.) To volunteer to bring Jim and Les a meal in the hospital please visit their page on
Lotsahelpinghands.com I have also add a couple photos to her album.
Her room is filling up with all of your cards, well wishes, stuffed animals and art work. Its really great to see the out pour of love for such a special girl. I’m working on getting you more photos and more information on possible visits soon I know so many of you are anxious to come by. Thank you for your patience and continued guest book signings!! There are some wonderful connections being made in preparation for the next steps for Lily’s recovery.
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