Let's start off with the most important stuff...KENNEDY PASSED HER SLEEP STUDY!!! She has officially been off the vent since May 21st and has been doing great without it! I can't tell you how happy and excited Arthur and I were to finally take her off. It just shows the great progress she continues to make. Our pulmonologist won't make any other changes until we see our ENT and they do a Bronchoscopy on her to see how her airways are. We need to see if they're healing and the condition of the scarring. Arthur and I have gone back and forth on what to do about the ENT and where to take her and we finally decided to take her back to Dr. Javia at CHOP. He's the best and since this is her main issue we want the best taking care of her. So we have an appointment with him on July 13th. We're thinking he's just going to schedule a bronc. So we'll see what happens and go from there.
Her oral feeding is the same, no worse no better. She is starting to take a little water from a cup and she's starting to eat VERY little by mouth (by little I mean about two spoonfuls a day) but I'll take any progress we can get. When she's ready, she'll let us know.
A few Kennedy milestones:
She's not officially walking unassisted but she's pretty close! She does her laps around the couch and makes her way out to the dining room. Once she figures out she can let go and walk we're in trouble!
She finally got her first two teeth! She looks so adorable when she smiles.
She said Dada!!! This is huge for her! As you all know Kennedy's trach prevents her from making any sound or talking. Since she breathes through her trach air never gets past the vocal cords. Well...the swelling in her airways must be getting better because she's starting to "talk" a bit! She's squeaking and starting to make out some sounds. One day we were in the living room and out came Dada! I thought I was hearing things until Makenzie popped her head up and said "Did she just say Dada?" It's the cutest thing because she gets such a kick out of hearing her own voice and tries to do it over and over again.
Kennedy went on her first overnight trip to LBI! And she did great!! She made herself right at home and it didn't seem to affect her at all. In fact, I think she loved being in a new place. Especially since it wasn't a hospital!
Makenzie still continues to be the light in Kennedy's life! I could watch those two interact for hours. Just so touching to see!
I think that's all the updates for now. I will write after we get back from CHOP.
Enjoy your Summer!! We certainly are so far =)
Love,
The Crist Family
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