Fourteen Months!

Claire is 29" long and weighs 17 pounds! This month she got three more teeth (for a total of seven). This month she started bending her knees to squat, taking steps behind a walking toy, and she learned how to chew!! She is wearing 3-6mo tops, 0-3mo pants, and size 2 shoes.

This month she had an endoscopy/laryngoscopy/thracoscopy, 24-hour pH probe study, an EKG and echo, and an overnight sleep study on top of her usual appointments, therapies, and follow-ups. She has been a busy girl!

Here are some pictures of her 14th month!

Scopes

Claire had a laryngoscopy/tracheoscopy/endoscopy today because she has been choking a lot and has trouble with swallowing. They did it in the big OR at the hospital with a special anesthesiologist because of her heart. She did very well. Anatomically speaking, everything is where it should be! They did find lots of inflammation though in her esophagus so they decided to take biopsies, we will have the results in a few days from those. But the muscles are strong which is great news. She also had inflammation and bumps in her trachea and where it branches off into her lungs on both sides which suggests aspiration and likely also aspiration of reflux which is trickier to treat. Because of all of the inflammation, she is having a 24 hour pH study now. They placed a probe through her nose and down into her esophagus. The base of it sits just above her stomach, you might remember that she had this procedure before in September. The probe is attached to a little computer that keeps track of her pH, as well as any reflux symptoms, eating, sleeping, and medications. We go back to the hospital tomorrow afternoon to have it removed and so they can download the data. The data will tell us how often she has reflux, it's pH, and how high up in her esophagus it goes. Depending on this data and the results of the biopsies, we will make a plan with her GI doc for how to better address the reflux and aspiration. Because she has the probe and computer attached to her, I won't be able to sleep tonight as she could get wrapped up in the wire and, as you can imagine, she hasn't been very happy with how much it limits her movements today, it's going to be a long 24 hours. Thank you all for cheering us on! I will update again when I have more information.