This week my mind has been littered with references to dozens of songs, sayings, movies, and books about “waiting.” I have been told by many that people are waiting for updates, and I can assure you that no one knows the feeling better than we do. This week has been about many things, but mostly about waiting. Waiting for test results,  waiting for signs from Ren that he is ready to come home, waiting for doctors to put together a plan of action, and waiting for a miracle.

After contacting labs about result dates and learning of lengthier waits than initially expected, we have chosen to start working to get Ren home while we wait for information about his condition. Living out of the NICU takes its toll on everyone, including Ren, and we feel he is better off at his house, in his room, in his bed, with his family rather than spending more time at Children’s right now. The constant beeping, erratic light cycles, endless poking and prodding, unfamiliar hands and voices are too much for anyone, especially a delicate baby. There are plenty of fears and risks involved, but after a pointed talk with a neonatologist that we have a long history with, we are hoping to have our training complete and have Ren home by the end of next week. Coming home will involve its fair share of medical devices, but nothing that we have not grown accustomed to using regualrly in the NICU. The greatest fear is that Ren will spit up food that he can not clear from his throat, which can cause him to crash and his heart rate and breathing to plummet. Normally, when this happens we are quick to use a suctioning tube to help him clear it, and he quickly recovers. Fortunately, his tendencies to do this are very predictable and usually occur within an hour of feeding, but only if he is touched or moved. This is one of the reasons we are anxious to get him home; in any given day, dozens of different people tend to lay hands on him, many of which are unfamiliar with his history or patterns. This is a source of great anxiety for us. At home, it will be extremeley difficult to keep eyes on him around the clock, but at least we will be able to manage his touches and movements in a way that keep him safest.

This past week has been busy and difficult, and updating the blog has not been at the top of my priorities, but never does a day pass that I don’t think about it. The outpouring of love, support, and interest in ourt family has been overwhelming and has touched our hearts in a way that we rarely express. Whether it be delivering home cooked food, sending gift cards for food on the go, commenting on the blog, or taking time out of the day just to hang out for an hour and talk about something other than the typical list of medical related topics, we are grateful for everyone. When I started this blog, I intended to direct people there instead of trying to explain our situation, and held hopes that it could one day help another family dealing with a similar situation. With over 5000 views, I am blown away by the continued interest and loyal following that Ren has today. We believe in our hearts that Ren will shock us all and we look forward to that time and writing those posts, but right now it means the world to us that everyone is sticking with us through the difficult times. That being said, the amazing and tireless Devona has recently uncovered a condition that we believe to be exactly what Ren has. Doctors have said that whatever we are dealing with is rare, and this condition is in fact rare, but more importantly it aligns with his symptoms and daily observances perfectly. We have presented her findings to our doctors and although they aren’t really a fan of armchair doctoring, it is hard to deny the uncanny similarity of this disease with Ren’s presentation. We were told, “It wouldn’t be the first time parents have found the answer to questions that doctors couldn’t answer,’ but it still takes some convincing in order to get those tests ordered. When we were asked to sign off on test for a metabolic disorder, we used it as a bargaining chip and agreed to do it only if they agreed to order the test we wanted. The condition is called RYR-1 and our hearts and guts are telling us that we are right. No one has looked at our case and our children more than we have, and we have been unable to find anything about RYR-1 that doesn’t line up with our story. The best part is that children with RYR1 have started from birth as hypotonic as Ren, and ended up being relatively high functioning special needs children. Do you remember the scene in Goodwill Hunting when he brings the professor a new proof to a math problem and when the professor initially asks a question about how he came to that, Will simply responds, “It’s right.”? The professor then tries again to open a dialogue about his methods, to which Will quickly shuts him down with, “Trust me, it’s right.” That is the best way i can explain what this situation feels like. Of course the only way to prove this “math problem” is molecular genetic testing, but we are quite hopeful that we are as close to an answer as we feel we are. Our goal is to have that blood drawn next week and to have Ren home by Friday as we wait for the results of all the outstanding labs to come rolling in.  I’m ready to stop singing Leonard Cohen’s Waiting for the Miracle everyday, and start singing some Ozzy Osbourne’s Mama I’m Comin Home. Much love from the Gordon family.