Morning All!!! Sorry about the lack of post yesterday!! Ive been pretty exhausted so last night after we got the bed (yes, we got it with a list of conditions, which is okay with us) So we are out of the monitored room and in our own room now :) There is a bathroom with a tub and shower for us to use, a tv with a VHS and DVD player and a day bed. Its not too bad at all, but there are many times that we find ourselves missing CHEO. I think the familiarity of CHEO was comforting and knowing that the staff all knew E, but I know we will get to that point here too :) It has been nice to see friends that we havent seen in awhile too and to meet new friends who have been supporting Epic E! Yesterday, Uncle Myles Anthony Lacroix and Aunt Shannon Legue came for a wonderful visit!! It was sooo nice to see you guys and E was obviously smitten with Myles :P Thanks for the Sleep Sheep and the ABC Toronto book too.. Hopefully at some point you can show us around some of the sights from the book!! :) We also had a surprise visit from Lynn Lavallee!! Thanks for the visit and for the teething moose and colouring book for the girls!!! Also, thanks for clearing E!! Everything helps!!! It was great to finally meet you :) Grandma Wheeler and Grandmaman Jeannette Deno also came by for a visit and LeighAnn And-Angela and Ruby... Its so nice to still have their support even here in Toronto!! We are so happy they were able to come up with us too!!! Thanks also to Grandmaman for all the food!! Food is always appreciated ;) In regards to the medical side of things, it has been a little stressful. We found out yesterday that her albunim (the protein that indicates nutrition levels) is outrageously low. They are looking for at least a 35 and she was at 10 yesterday, up to 13 today. This needs to improve before they can do the surgery (as long as she is functioning okay), so we are looking at the possibility of waiting another week or two before surgery. Not quite what we were expecting. And her sodium is still low, which also needs to come up. Another bit of a shock to us is that they are reevaluating her diagnosis.. Oncology has been consulted again because theyre looking at hepatoblastoma again. The fact that the tumour grew back so aggressively is what they are concerned about. There is the possibility though that it is just an atypical mesenchymal hamartoma in which they will go ahead with the planned surgery. We also got to meet Dr Gerstle yesterday who seems pretty fantastic. We discussed the potential timeline and what hes looking for in regards to helping her reach her optimal levels. For now, and until she regulates her levels of nutrition and such, it looks like we will just be hanging out here. She had an ultrasound and an X-ray yesterday and they took blood using her picc line. She will continue to be monitored, but there isnt too much we can do at this point other than wait. Your continued love and support is greatly appreciated!!!! Much love to everyone!!! ~*XoX*~ Epic E and Family!!!! :)
Posted on: Tue, 15 Jul 2014 14:22:00 +0000
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