I originally wrote this update (on 9 January) to share with family and friends. Then I was writing a post here and wanted to link to my post about these appointments, only to realize I'd never actually written that post. So here it is:
We moved at the end of September, and have been working through the process of getting established with a new insurance provider and a whole new care team for Elijah. This month saw the beginning of what looks like it's going to be a whole string of appointments for him. We saw cardiology Wednesday of last week, and spent eight hours today (Monday) with the craniofacial team.
The cardiology appointment last week was inconclusive. Elijah's previous medical records hadn't arrived by this appointment, so all the doctor was able to do was confirm that the aortic root is still dilated, and it's still not enough to be of immediate concern in and of itself. We'll probably know how it looks in comparison to past images after our records arrive. He also said that the left chamber of Elijah's heart is enlarged, which is new. Again, we're hoping to know more after the cardiologist reviews past images, but for the time being he wanted to plan for another echo and check-up in 6 months.
Today's appointment was exhausting, but overall I think it was really positive. We saw seven different providers and Elijah had an x-ray of his neck. A few of the highlights:
*Dan had the day off work, so we were both able to be present at the appointments, hear and ask questions first hand, and juggle the kids.
*Elijah finally had a hearing test where he was cooperative enough to gather the necessary information to tell whether or not he can hear. He has (low-end-of) normal hearing in one ear and some hearing loss in the other ear--but the hearing loss is due to fluid behind the ear drum *not* a degenerative condition. Three cheers!! (Long-term/permanent hearing loss is often associated with PRS.)
*We have some good leads for various options for speech and feeding therapy--speech through the school district and/or a private provider, feeding through a private provider and/or the hospital's feeding clinic. The dietician here seems much more familiar with blenderized diets than the one we worked with before, and it looks like she'll have some good suggestions for helping Elijah gain some much-needed weight. She has recommended that he be evaluated for enrollment in the hospital's intensive two-week feeding clinic, which is something I'm ambivalent about.
*The ENT is ordering a sleep study as a first step in dealing with Elijah's sleep-breathing issues, and a swallow study to see if we can learn anything pertinent to his eating.
*This new team has a craniofacial pediatrician whose job it is to oversee the big picture of Elijah's care--something we haven't had before. She spent a long time with him and us today, asking lots of questions and thinking aloud with us. She wants to pursue a more definite diagnosis again, and sounds very positive after her exam that we can make more progress in that direction. She is referring us to two more doctors, one who is both a craniofacial specialist and a geneticist, and one who is both a craniofacial specialist and a cardiologist. She is running interference with the cardiologist we saw last week for us, without my even having to ask. She is thinking about his care over the long haul as well as the next year. In short, she is wonderful! And I am excited to have some help in managing his care from someone with a career's worth of expertise in this stuff.