9 months old...

I Haven't posted in awhile, haven't really had anything at all to post about...until now. Kailey is now 9 months old/ 5 months adjusted. She is a little behind. She isn't trying to crawl, won't reach for things or people and isn't very good at rolling. But she has been supporting her weight with her legs for a few months now. Her legs are very strong, she can go from sitting to standing if you hold her hands to provide balance. She has been amazing her PT since she started getting services. She is still on oxygen 24/7 but we have been able to ween her down to 1/8 of a liter. She is now taking 5oz of formula every 3hrs and we are still working on solids, although she does love oreos. She is the biggest strawberry shortcake fan ever, she would play in her exersaucer all day watching strawberry if i'd let her. She just had her first ENT office visit in Cinci the other day. The swelling in her airway has started to go down! This is the first step to getting rid of her trach!!! In about a week she has Nicu grad appointment, i am not looking forward to it at all. Every time we go they spend 3 mins with her then tell me that she has everything wrong with her, her muscles are weak and she has a floppy neck for example. This kid stood up in her incubator while we were holding her breathing tube inplace when she was 24/25 weeks gestational age, how can someone say she has weak muscles? I'm also not looking forward to them telling me I shouldnt be feeding her what i feed her, we had to switch her formula to similac allem b/c she wasnt tolerating neosure anymore. After the switch i called to let them know that she had liquid stools all day long and it was making a horrible rash on her bottom and all they could tell me was "if shes not tolerating it then we suggest you take her to cinci".....SERIOUSLY? why would i have to take her to cinci for that? So i started putting oatmeal in every bottle and started her on baby food (she only eats about an ounce of baby food a day) on my own. They also do not approve of exersaucers or walkers, which we use almost daily. I do not have the same views on things that they do so I'd prefer not have her seen there. I've already requested to start being seen at the nicu clinic in Hazard Ky since its about 1.5hrs closer to us. We do have to keep her appointment coming up in lexington just so she can see the speach therapist, which we are excited about. Get to try out the speaking valve again, YAY! I do not have any pictures at the moment, but I do add some to instagram every now and then....