Nothing too exciting is going on over here. That's always great news. ;o)
After a few hours of hashing out details with the people at the Biltmore, I finally managed to book the trip. We were running into space issues since we'll be bringing all of Mackenzie's equipment, and trying to find a hotel with enough space was a bit interesting. In the end we found one that had a king suite available and is 10 minutes from the nearest hospital. If we can't fit her pack-n-play and vent in the room, then we can have her in the living area and one of us can sleep on the sleeper sofa. There looks to be plenty of room and I think it'll work out well.
I've been finishing up birthday shopping and am waiting on a few items to arrive - one being her Melissa & Doug Alligator Walker and the others being cool weather outfits for Mackenzie. The average in Asheville is supposed to be 75, so it can really go either way with the mountain air.
The closer we get to Mac's bronch the more I don't want it to happen. I hate the idea of sending her into the OR without being by her side. I also know that even if the bronch shows her hemangiom has shrunk, she still needs her trach because of the CPAP at night. And, unfortunately, it doesn't look like we'll be getting rid of that this year.
Developmentally Mackenzie has made terrific progress. As I've said before, our main goal for her was to have her sitting unassisted by her 1st birthday. Check that baby off the list! :o) She's sitting beautifully and was wonderful posture. Mommy and Daddy could definitely take a few notes. We've moved on to standing and crawling. She doesn't seem very keen on the idea of crawling, but she loves to practice standing. I think within the next month or two she'll be standing with a little support of something to hold on to, but that's it. Her feet are nice and flat and she keeps her back straight, although she likes to stick her toosh out. :op Silly girl.
I'll be doing a picture update soon, so just keep your eyes out. :o)
Niff & Andy
We are the parents of Mackenzie, a former 26 week preemie who was born September 13 of 2008, weighing 1 pound 11.5 ounces. After being diagnosed with a subglottic hemangioma three months later, Mackenzie was trached and has since proven she is anything but ordinary. Mac also has laryngomalacia, chronic lung disease (bronchopulmonary dysplasia or BPD), hypertension, biventricular hypertrophy, gastroesophageal reflux disease (GERD), and sports a MicKey Button for enteral feedings. She keeps us on our toes and ensures Mommy and Daddy remember who’s really in charge.
Actual Age
Adjusted Age
Pose it... pose it! Click!
Mackenzie loving being home.
Daddy, I think you missed my mouth.
Can I have more of that sweet stuff? I promise I'll be good!
Mackenzie, you are an inspiration to us all.
Shhh little one! Santa won't come while you're awake.
We love you more than anything, Mac.
Daddy holding Mackenzie's hand. Hang in there little sweetie. We love you!
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3 comments:
It truly is wonderful to see her progress and how well she is doing. I cannot believe she is almost a year old! Bet you two must feel like it has been a long and short year at the same time.
I just realized, Mac and my LO had the same EDD but she was born 12/12.
I can't believe she's almost a year!! Last year at this time we were all whinning about how much being preggo made us all uncomfortable. hehe.
I hope everything goes great on your trip! That sure seems like it's going to be quite a feat.. I freak out about going places for a few nights just because of the feeding tube and me pumping, lol! I'm a wimp. I can't imagine how much planning you are having to do. Good job, mommy!
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