Team Fighting for Faith had 30 walkers this year (some of our team is not pictured we apologize to those who are not in the pic!). No, that beautiful girl in the kid cart is not Faith- it's her friend from the hospital Noel. (who is trach/vented just like faith) she was her fill in that day- boy was she a trooper!!! Noel's family donated our shirts this year (Thanks Tina & Co.!)
We decided to leave Faith at home since it was cold and windy (she has enough problems going out when it is sunny!)
So Faith just stayed at home at cheered us on her "footprints of Faith" onesie (yes those are her footprints on the shirt!) And yes, she now wears her glasses consistently!
Bottom: Sunday night some of Faith's primary nurses from children's stopped by to say hi (thanks for the yummy dinner guys!!!!)
We are so sorry it's been a while since out last post- we've been having technical problems, which are now all squared away. Things are going great- and yes we are still home (I tell ya we are here to stay......) Faith has had a few doctors appointments at Children's- one of which they dropped her breath per minute rate on the ventilator to 8 (when she is awake...10 when she is asleep) which is a step in the right direction. Faith is proving that she is still fragile- at first we dropped the rate to 8 24/7 and Faith did not tolerate that very well- it's amazing how just a little change can affect her so much. Nothing much to report- we are back at work- just 5 weeks until summer break...(yes...huge plus of being teachers!)When we are at work Faith stays with a nurse. Right now we have 5 days of nursing and 3 nights- the nights have been crucial. Faith is still not the best sleeper. We manage it when we don't have someone but we are zombies the next day. Regardless it is all worth it. Well that's about it for now. Thanks for stopping by!
Brian, Jen and Faith