12 Weeks

So much has happened in the past couple of weeks. We had an appointment with the Pulmonologist, which led to a bronchoscopy. The results back from that showed that Lillian doesn't have any major obstruction in her airway.

Last week we had a meeting with our Endocrinologist Todd Nebesio. So far we really like him, but he isn't very experienced with infants that have PWS. He was very hesitant to give Lillian growth hormones this young. We basically told him if he doesn't, we'll find someone else that will. We would rather he give us a try so that the next family in our shoes can get help ASAP. Hopefully we can set a new standard for his PWS patients. Anyway, we found out today that we can get the GH, but he wants us to have another sleep study first. Lillian freaked out during her last sleep study, so it sucks we have to have another, but it's worth it if it means she can start GH treatment. We should find out in a couple days when that study is scheduled. Sometimes they take weeks or months to schedule. Fingers crossed it's a quick appointment for us.

Yesterday we met with Dr. Hainline, the Prader Willi specialist, a genetics counselor, and a dietitian. Lillian is in the 50th percentile for height and weight, which would normally be a good thing, but the dietitian would prefer she be closer to the 25th percentile. She gave us a new feeding schedule and finally gave us more than 3 hours at night! We can finally sleep up to 5 hours straight as long as Lillian doesn't wake us up first.
I also got a call today from the regular pediatrician's office about getting a shot monthly that's supposed to keep her from getting respiratory infections. Now that I think about it, I should probably call Dr. Hainline and get that Ok'd by him. She also has a clogged tear duct, which is no big deal... but it's discharge is kind of green so we're going to the doctor tomorrow to make sure it isn't leading into an infection.

We're still going strong with physical therapy and occupational therapy. I really like both therapists and they tend to stay past their required 1 hour slot and work extra with us. We're going to be working together for at least three years, so I'm really glad we like each other! We might go from 2 meetings a week to 3-4 a week in the future, so I'm SO grateful they work well with Lillian.

Here's the low-down on the other stuff, and a few pictures:

Age - 12 weeks
Weight - 11lbs 3oz
Height - 22.5 inches
Sleeping habits - She sleeps pretty well from 9-4:30 or 5am. Takes 2-3 naps a day that are about an hour long.
Eating habits - She takes 28oz a day. About 18-20 of that is breast milk. Her suck is getting stronger and she's able to take about 40-60ml by bottle a day.
Favorite activity - She LOVES her play gym. She starting to realize her hands can touch the things that hang from the bars and she gets really excited about it!
Cutest Moment of the Week - She kept accidentally hitting her toy that makes chime noises and looked over at it each time. She was trying to figure out how to bring her arms in and hit it again. She also keeps pulling her hand to her mouth and tasting her hands.
Milestones - Better hand coordination, better sucking, rolling from side to back
Firsts - She went to church for the first time last Sunday and also went out to dinner with us at DeAngelos.


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