Smarty Pants

Miss Fiona has decided that she is going to smack me every time I tell her no! She really likes to pull on the gauze on her O for some reason. Well I constantly tell her no and pull her hands away. The other night she smacked me twice when I did it!

She is just a big ball of energy! You can tell she just wants to get down on the floor and play. Hopefully soon! She signed her first word yesterday! I asked her how to say "hat" and she surprisingly did it for me! Luckily my mom was there to witness the 4 times she did it because now she won't do it anymore and won't even show daddy! We are working on walking with her and she is doing great. At the beginning we had to move one foot and she would move the other, but now she is moving both pretty well until she gets excited and then just hops! We have also gotten her to stand for a few seconds at a time while holding onto her play table

We have an appointment with Pulmonology and ENT next Tuesday (the 18th) to discuss where we go from here with the trach/vent. I can't remember what I said in the last post, but she is off the vent all day and can be most of the night. The only issue we are having is coughing from her being so dry. So when she starts coughing we put her back on. Her nutritionist is very worried about her lack of weight gain and so now is her Pulmonologist. We don't really know what else to do but to keep trying to get her to eat as much as possible. I weighed her this morning and she was 13 lbs. 11 oz. We really hope this doesn't interfere with getting her trach out. Tom said they better have a really good reason not to do the sleep study or he is going to be furious. We are both just so ready for the trach to be out and have somewhat of a normal life. We are so very lucky that most of her issues are not a lifetime thing. I can't imagine having to deal with a trach/vent her entire life. I have *kind of* gotten to have some normal nights with her! We only have a part time night nurse now. So on the nights that we don't have a nurse I take her in our bedroom and let her sleep in bed with me. (Tom is on 3rd shift, so it's just me and her!) I don't really get much sleep, but it is so nice to have her in bed with me! Tonight is one of those nights :)