I just realized it's been a month since I posted last, so I thought I'd share a quick update.
Summer has been doing mostly well over the last month. She was sick for about a week, which prompted us to start a stress dose (3x what you would normally need) of hydrocortisone to help her body cope with the illness. It was as a precautionary measure the endocrinologist recommended because her cortisol levels hadn't been tested in a while. If her body wasn't naturally producing the cortisol it needed, this type of flu-like illness could have been very dangerous for her. Luckily, her levels ended up being just fine on their own, and we were able to wean her off the medication last week.
A few days before she got sick, Summer started sleeping poorly, was especially irritable, and not interested in food at all. At the time, we didn't know she was getting sick, so this concerned us a bit. We also hadn't heard back from Dr MacDonald about Summer's last scan (from March 4th), and how it compared to the most recent scans done in Boston (our doctors here at Childrens only had one from early January to compare to, so we were interested to see if it had changed since the mid-February scans from Massachusetts General).
It turned out that the records never made their way to her, so I requested them from Childrens again. We had gone back and forth with Dr Geyer about the time frame for the next scan and were originally going to wait three months unless Dr MacDonald wanted one sooner. Since Dr MacDonald hadn't yet received Summer's most recent scan and we were getting a little worried about the irritability, I decided it was time to push for scheduling her next MRI. I sent an email to our team at Childrens outlining our concerns, and we now have a HASTE MRI on Monday morning (4/18) to check the cyst size.
Since Summer has recovered from being sick and is back off the hydrocortisone, her behavior has mostly returned to normal. We also heard from Dr MacDonald that the overall cyst size was stable, with some minor increases and decreases in various pockets of the cyst. I'm no longer terribly concerned about what the scan will show, but we're keeping the appointment for the peace of mind.
I'll post on Monday to let you all know what we find out.