Sorry I haven't been keeping up with my journal posts, it's been super busy here at Mac! Yesterday we started my final feeding plan of every three hours. That means I feed for an hour and then fast for two. This is the feed schedule of most babies! All my doctors are very happy to see me on this plan. Most importantly my glucose levels have been the best they've been in a long time! I had a 5.7 today :) All checks have been over 4 as well.
Since my feeding and sugars have been so good, I've been able to go for long walks around the hospital! Yesterday I went to visit my friends in the genetics labs. They live in a distant drab looking part of the hospital that I was sent to on the first day I was here. I got to see Dr. Kozenko and Dr. Potter. Also while I was there I saw Christina who was the lady who called my mom and told us to come to Mac in the first place. Everyone was sooo excited to see me out of my room! Dr. Kozenko is still calling me the miracle baby as I continue to marvel and confuse the experts. We had a great visit in genetics and most importantly we stepped outside just for a moment and had a breath of fresh air.
Once back in my
room, my uncle Brian and Grandpa Philp stopped in for a visit. Now
that my cords are to a minimum, both of them got to hold me for the
first time! I was very well behaved and really enjoyed my time with
them. I also got a sweet Pooh blanket and card from Bri and a Pooh bear
from Leslie. Kate, my OT came to see me and assess my muscle tone, head control, and talk a bit about my plan. She said she would like to try to do the bottle test next week again since I don't make sense to her. I hear there's a lot of that going around. So far my tone and head control are pretty good.
Meghan our regular resident came to tell us that the plan is for me to continue my feeding schedule and go for one last full blood gases test this afternoon. Once that is normal I will go down to only periodic glucose checks. If I behave over the weekend, I may be ready next week to get discharged! However I still haven't gained any weight, I have been sitting at 3.15 for the last week. Maybe my dietitian, Amy will be by today... I have been honoured with a few of Emerson's outfits as I am the "younger brother". It's been a pretty sweet deal!
My plan for home will continue to be regular glucose checks. I'll have a nurse come by to prep and administer my unique cocktail of vitamins. I'll be coming back to Mac for checkups and to visit Kate to work on my mouth skills. My pump will come with me and I'll keep my feeding tube but I'll be able to go for walks with mom and have more regular visits and a more normal home life.
Will keep you all posted on the plan as it continues to progress.
Thanks again for everyone's thoughts and prayers!
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