The last six weeks felt much, much longer. I packed. We moved. Maaike got RSV. We tried to unpack and get organized. We passed Maaike's tracheotomy one year anniversary. We shopped and tried to reinvent our house. But mostly we waited.
Our last trip to the hospital confirmed my fears that Maaike's next surgery wasn't years away, but was right around the corner. And though we have been pleased with our local doctors and hospital they have never seen someone like Miss Mike before. Through emails, research, and phone calls across the ocean we were directed over and over again to one particular doctor in Boston. As soon as we got the go head, and in less than 24 hours, we collected every scrap of paper, slide, x-ray, and scan of Maaike and sent it off to Boston.
We were told the review would take about two weeks. At the end of two weeks we could expect a phone call that would tell us if they would take Maaike's case or refer us back to our local doctors. As usual the two weeks came and went. We waited and waited some more.
Then finally, last week, they called. We're in! When your child has a rare condition you want the best, the very best. Worshiping in your local shrine is great for everyday needs, but when you are seeking a miracle it is time to pack up and pilgrimage to Mecca. For now our Mecca is Boston. Boston here we come.
We will probably be making a couple of trips to Boston this year. This first trip will be to meet with all the specialists and run some tests. We are hoping they will take care of her stoma surgery on this trip (to enlarge the hole in her neck for a bigger trach), but her tongue reduction and other treatments will most likely have to wait until the doctors can all confer.
It seems unbelievable that we have a child who's health would necessitate a move around the world and then flights to the other side of the country to get her the proper care she needs. China is just a distant memory and our day to day life revolves almost completely around Maaike's care, but we are happy. We are happy to be together, to be back in our house, to be surrounded by people who no only love us, but who drop in, at all hours of the day, without being asked to help. So while Boston may be our medical Mecca, the location for the Mecca of our lives is right where we are.