I didn’t think I was going to be able to do this…but tomorrow I am getting on plane heading for Rome. In Rome I will be attending the World PCDH19 Conference which is being held by our partner organization, Together for PCDH19 Research. We will be working with the researchers and conference attendees on how to best orient the grant we will be co-funding. It is a really exciting opportunity to get to know some of the major researchers in the world of PCDH19.
I wasn’t sure I would be able to go because of the recent status of Esmé’s kidneys and the looming potential for surgery to remove kidney stones in her ureters. Fortunately our last visit to our Children’s Hospital gave us some good news: the stones that were worrisome last month have moved on by themselves. This meant that we were able to avoid an urgent procedure. Her kidneys still require surgery to detach, possibly reconstruct, and reattach both ureters and likely scope her stone-producing kidney. Because of the nature of her anatomy the surgeon is still discussing the best plan for surgery, but if we can keep her infection-free we should be able to wait for the surgery until it makes good sense for Esmé and our family. This is a positive thing.
I am nervous about the surgery given that her last surgery (in March) was, strictly speaking “ambulatory” but landed Ez in the Surgical ICU for 5 days…but we have time to plan for that and weigh all the options.
But even better than that is the fact that Esmé has had a tremendous few days. She has been so active…army crawling out of the room to create big adventures for herself. Yesterday she “stood” with some balance help leaning against a chair. It is a long way from cruising or unsupported standing…but it was truly amazing.
And Ez has also been very vocal–shouting at us from the back seat because she wants us to keep singing “Old MacDonald,” calling for me in the morning, saying what we think is an approximation of “Elmo.” This is particularly fantastic as in our appointment with our neuro last week our doctor raised some concerns about a “seizure-like” behavior that Ezzy exhibits between 10-100 times many days. The doctor was able to see it for the first time in person and she worried that it might be harming Esmé’s progress. Ezzy had been rather silent these last few weeks and months. But clearly that was just a pause, because she is back at it again. We will be getting an EEG to make sure it isn’t a particular type (that would be unlikely, but worrisome), but her clear gains make me feel so much less concerned.
Her progress makes it easier for me to think about leaving her for a few days. Although I am feeling so anxious about leaving her, I am truly excited about what this trip will yield not only for The Cute Syndrome and PCDH19 Research….but also for Esmé’s independence. She has been responding so well to her faux pre-school with her nurse and I know that after being away for four days I will come home to see the difference in her in a new light. And I am fortunate to know that Ezzy’s full team is on deck for my time away: nurses, therapists, grandparents…and, of course, my darling hubby and super-papa!
She will be in good hands, of course.