This past week

We had a very crazy week with tons of appointments. Luckily, not all the appointments resulted in more appointments! Here's an update:

Hazel: She met with a feeding therapist, but we don't really know what the "plan" is yet. She shut down in the middle of feeding (which is one of her "tricks") and the therapist couldn't get a good look at the inside of her mouth. She does have some mechanical/sucking issues, but we think her main issue is some sort of feeding aversion/sensory issue. The mechanical issues developed after she started refusing to eat, so it seems they are not the main problem. Overall, her energy level and interaction have been better over the past few days in comparison to the prior week, but she still hates eating. She usually starts out just fine and then about halfway through, decides she's had enough and either shuts down or "freaks out". She has finished more of her bottles over the past few days, but it's a minimum of 30 minutes since we take many breaks allowing her to calm down. Sometimes it takes 45 minutes to an hour and she still doesn't finish. At that point, we give up. Please PRAY that this gets resolved soon. Our lives would be much more flexible if she ate consistently and our whole day didn't resolve around her lengthy feeds, and she would be so much happier. Aversions and mechanical issues often take a long time to work through, so we are praying for a miracle of quick healing for her...praying that eating is not scary for her, that she enjoys it, that she doesn't have pain from reflux, that she sucks effectively, and that her weight gain is adequate. She saw the pediatrician twice this past week and will go back next week for a weight check. It's difficult to convey how frustrating this situation is, so we appreciate your prayers.

Pulmonology: We went to UCLA on Friday to see what we thought of their pulmonology department/doctors. It's GREAT! The availability is so much better. The doctor wants us to come back in 1 month, and we actually got an appointment scheduled for 1 month from now! She thinks that Hazel looks great and won't need oxygen much longer. She also said that it's possible we could try Jude without it during the day after our next visit. She wants to repeat the sleep study, but said we could do it at home! The Children's Hospital doctor said she'd repeat the sleep study in many, many months, which means she wasn't planning on making changes for many, many months. So, we're excited that this new doctor is willing to look at making changes in a month. It's quite a bit farther away, but will be so worth the drive if we can get these kids followed more closely, and off the oxygen sooner. We are most looking forward to "graduating" from pulmonology. It impacts our life so much and will be so great to be done with.

That's about it!