Oh, Joey. Why can't I do any of this for you? Why can't I put myself in your shoes and be the one who has to go through all of your appointments and procedures and surgeries? Why? I don't ever feel sorry for myself, but I can't lie, there are many days when I do feel sad and I do feel so very sorry you have to do all of this.
But you are tough. You are resilient. You keep trying to pull up and stand on your own, but you aren't quite able to do it, yet, but you never stop trying. You keep forging ahead. And so that is what we will do. We will follow your lead. Your example. Your incredible spirit.
|This was Tommy's favorite spot and now I'm using it to get you to stand so we can cook together. You seem to like it and you seem to be able to stand for about 20 minutes on your own in here. Great job, Super Joe!|
|Your sweet teacher sent this to me today. You adore her and you love school so, so much!|
Here is the bad news, Super Joe. Apparently you have "Brown syndrome" and I cannot help but find it a little bit humorous. I mean seriously. Brown syndrome? Rhymes with Down syndrome. Apparently it is also called "Superior Oblique Tendon Sheath syndrome." I guess we will stick with Brown syndrome (named after Dr. Harold W. Brown) for now. What is wild is that we kept thinking that there was something wrong with your left eye, but it seems that perhaps it is your right eye that is causing the problems.
Here is an example of what it looks like:
Brown syndrome is "a mechanical problem in which the superior oblique muscle/tendon (on the outside of the eyeball) does not move freely. This makes looking up and in with the affected eye difficult. Often the higher eye is mistakenly presumed to be the abnormal eye but the lower eye is affected. Brown syndrome causes the lower eye to have trouble looking upward in side gaze. Essentially the affected eye is “tethered” or held down by the tight superior oblique tendon."
In your case, Joey, the doctor is concerned with your binocular vision. Your left eye extremely overcompensates and he believes your right eye is being tethered down as described above. We worry because that beautiful little left eye seems to go flying off into your brain and you seem to have a hard time looking up or to the left.
Lucky for our family, your vision specialist from the Cleveland Sight Center joined us and not only helped us get through the appointment, but she really made sure we knew what questions we wanted answered and she was this calming fairy Godmother presence throughout the appointment. Thank you, Brenda-- we know how valuable your time is.
The fun part of today was watching you and your brother make the most of our long journey. As usual, you both offered much comic relief.
Okay, Super Joe. Just a little bit more bad news. Today we scheduled your third eye surgery. It's tentatively scheduled for Friday, May 10 so we can fit in some extra appointments to see the other doctor and to see if there is any improvement at all. Eye surgery isn't anywhere near the ballpark of your open heart surgery, but along with it comes at least four extra appointments including a pre-op, a visit to the pediatrician to clear you, a cardio clearance, the actual surgery and the post-op surgery. Each of these appointments tend to eat up at least half a day at a time. But it's okay. It's more time we get together. Just another part of our adventure!
I'm not afraid of another eye surgery, but I am concerned. Each eye surgery you have had seems to have brought about a new set of problems. Your doctor told us the most surgeries he has ever had to perform on one patient was four. We are hopeful you aren't out to beat his record.
This August you will be three and by then you will have averaged two surgeries a year for your life. That's a lot of anesthesia for any one little person. One open heart surgery, one ear surgery, one auditory brain stem and 3 eye surgeries.
|Another adorable photo from his teacher at It's All About Kids preschool.|
Super Joe, you are going to take this next step in stride. You will rock the surgery and the recovery and every aspect of it. We are going to get your eyes in a good place because before long you will be running after your brother and we need to make sure you have every advantage possible.
We love you, Super Joe. In our eyes, we don't even see Down syndrome. We just see an amazing little boy who is full of love. We won't see the Brown syndrome either. We will put it in a bucket we try to manage--but not focus on--that has included the following mysterious sounding diagnoses of nystagmus, ascites, torticollis, plagiocephaly, apraxia, atrial septal defect, mitral valve leak, cystic hygroma, strabismus, optical torticollis and other things we can barely pronounce. Just a bump in the road, my love. A bump in the road.
World Down Syndrome Day: One Week Away!!! March 21, 2013
Only 1 week until March 21, 2013-- World Down Syndrome Day!!! Will you be celebrating? Will you be wearing your Joey's All Stars shirt? Will you consider making a donation to The Up Side of Downs and Stand Up For Downs to help individuals in Northeast Ohio with Down syndrome?
There is a beautiful blog posting over at the Summit DD site that tells the story of Joey's search for a preschool.
Next Thursday I will be doing a guest post on their site and cannot wait!
Any advice you would like me to share with the world about raising a child who has Down syndrome? Just shoot me an email or leave a comment.