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    And thats how Kailey says Hello! A little update before I have to go chase the little booger head down. She is now crawling, on her hands and knees and she is VERY fast. She is pulling herself up but doesn't have any balance yet. We got the okay to switch to whole milk from her pedi but they want to see what the NICU clinic says in a few weeks. she still has her trach and is still on oxygen, although she takes her oxygen off multiple times during the day and just goes about her business playing. She is now almost 16 month's old (12 adjusted) and weighs 15lbs. .......now i must go fetch her and attach her back to her oxygen.

update and bday pictures

      so our last ENT visit didnt go well at all. The scar tissue we had removed before grew back and brought some friends :( Her airway is very reactive and they have no clue why...as soon as they get the scope in she starts swelling. now she has to see GI to see if they can figure it out.
      She is gaining weight a lot better now, she's up to 14lbs! She has finally started eating stage 2 foods like a champ. our speech therapist thinks she may have some sensory disorders b/c if any textured food gets in her mouth she will make herself throw up to get it out. She is still not crawling, but still trying. She can hold herself up on her arms now which is great improvement...and she can bring her knees in and push her butt up in the air....its just not clicking for her to do them at the same time lol. she has a itty bitty front tooth trying to come in finally. From what i've noticed with her and what i've read she is doomed to have horrible teeth :(

\I made her Birthday cake...she played in it for awhile then got it in her nose and started crying. I'm not sure how people do the 1 year smash cake while not at home...she was freaking out and had icing EVERYWHERE, she had to have a bath right away. But it was fun :)

   

Almost a year old...

so i just realized i never post on here anymore. theres just way to much going on in our lives to keep track of everything. I usually never have any time to actually sit at my laptop and do this and i couldn't remember my username/password to do it from my phone. Kailey is doing well. She is 14lbs and 25". She is now sitting by herself for short periods of time. Her arms are not very strong so she can't hold herself up long enough to crawl but we are working on it. She is still on oxygen but her baseline is now 1/8 of a liter and we are still weaning as tolerated. The swelling in her airway has gone down quite a bit, now ENT is focusing on getting rid of scar tissue that is sitting right above her trach and blocking most of her airway. They keep trying to get it out when she has her scopes but she is still to little for them to get it.

     Her 1st birthday is coming up. we can't have a party for her due to flu season, so we will just have a cake and presents at home just the 3 of us. I can't believe it, she's going to be 1. where has the time gone? she definitaly doesn't look to be a year old, people are usually amazed when they first see her. "the little newborn is holding herself up very well" is usually the reaction we get lol. yes she's little, but she doesn't let it get her down. Daddy and I decided that she's not allowed to have excuses anymore. She has to continue to be strong and not use her trach or being premature as an excuse not to do things.

      This winter has been a little tough on us, Kailey loves being outside and going places but since its flu season we stay in as much as possible. She gets so excited when we go to the doctor because she actually gets to go somewhere. Usually if we have to go to the doctor we plan all of our errands for that day. so we won't have to get her back out of the house. I had our meeting with first steps (program for free therapy for premature infants that need it) the other day and I was asked "who is your support system"...as in who i leave Kailey with. HA! my baby goes to no one and wont for a long long time. I don't like other people suctioning her, or touching around her trach at all for any reason. She doesn't eat well for anyone except me. no one else has trained themselves to her sounds. I wake up at night every time she needs suctioned. I wake up when i hear her oxygen tube hit the floor. I wake up when i hear the way her secretions make her sound when she laughs or crys. I wake up way before her monitor beeps when something is wrong. She needs ME at all times. I may be tired all the time, but i've gotten use to only having a couple hours of sleep at night then staying up all day. Its our life now and i wouldn't change it for anything.

    ExhaustedMTB from WTE~ thank you so much for sending Kailey birthday money! you are so sweet! she is going to the doctor on the 15th and this when i will be taking her birthday shopping! (and maybe to get her ears pierced havent decided if i'm brave enough yet) Hopefully i'll remember to get back on here and post pictures from her birthday!

   In other news...I have decided we could handle another kid. So we are going to start TTC again! Hopefully it won't take 7 years this time! Happy HEALTHY Magic Baby dust to me!

My instagram name has changed.. it is now Krisjustic