Results...

We got a call from the pulmonologist this morning with the preliminary results of the sleep study. It looks like Jude will be staying on the same setting and Hazel is getting put on oxygen for sleeping. :( She was having some irregular breathing patterns and would do some quick desats as a result. Soooooo, during naps and nighttime she will be on the oxygen. It definitely feels like we're going backwards. And, we're all the more frustrated now that we couldn't get her in for an appointment earlier. She's been home for over 2 months! We do have an appointment on April 8th at UCLA for a second opinion. We are already very impressed with them in terms of scheduling. They are actually moving other patients so that our kids can come in together! What a concept! Their scheduling department is friendly and you can actually talk to a person rather than leaving a message. It's a farther drive, but if we like the doctor, they are way more accessible and we plan to switch. We need to get these kids strong and off the oxygen before we can think about moving anywhere! Please pray for speedy lung development.

Hazel should be starting feeding therapy next week. Please pray for her. She just does not like to eat. It seems to cause her so much discomfort and we now fear she is developing aversions. She's still growing, but much slower than before. Some days she seems to do quite well (like yesterday) and other days, we think she'd prefer to eat nothing at all (like today). It's such a roller coaster. She's still quite smiley and interactive when she's awake, but often times during and after feeding, she just shuts down for long periods of time. We just want her to enjoy eating and have her be healed from any physical and psychological problems that are hindering that from happening. Thank you for your prayers.