We went to see the Opthomologist again today for a follow up on Joaquin's strabismus. It was a good appointment in that Hector and I didn't allow ourselves to feel rushed and we asked a ton of questions and really got a better sense of what the doctor thinks is going on with his eyes.
The GREAT news is that Joaquin has wonderful vision. He does not need glasses and we can proceed with any reading program and visual activities that we want to do with him. This is a HUGE load off my mind as I have put off some interventions that I wanted to do with him because I was concerned about his crossed eyes.
The BAD news (but it's not really that bad) is that we have to patch again for one more month, patching his right eye (the dominant eye) for two hours a day. In one month we return to the doctor's office and if she feels that Joaquin is using both eyes equally, she will recommend surgery at that time. If she still feels there is an inequality, we will continue patching until the eyes are both being used (meaning there is no dominant eye).
The SCARY news is that it really looks like eye surgery for strabismus is in Joaquin's future. This is really hard for me to contemplate. There are many reasons why. First and foremost, we learned at The Institutes that eye surgery should always be avoided and instead we should work hard on helping to change the root or cause of the problem (the brain injury) instead of the result of the problem (the crossed eyes). Second, I hate the idea of cutting a muscle and reattaching it...especially when it has to do with his EYES! Third, I have sort of come to love Joaquin and his crazy crossed eyes and I worry about the "reasons" for doing this. Is it really necessary or is it cosmetic? The doctor seems to think that there are valid medical reasons as well as cosmetic reasons for doing this. Fourth, there is a 75% success rate for this surgery and the other 25% may need additional surgeries to fully resolve the strabismus. Uggh!
So...we have some time to think. We have at least one month of patching before we have to make any big decisions. In one month, we will see what the doctor says and go from there. We will be pursuing a few second opinions. We may see at least one more Opthomologist and then also consult with a Vision Therapist and an Optometrist. Just a few more things to add to our already full plate but Joaquin is SO worth it.
Living life one day at a time as a family of six...3 busy and bouncy boys and 1 Ukrainian princess. Our third son Joaquin was our unexpected blessing who came to us with a little something extra called Down syndrome and inspired us to adopt Sofia an orphan we fell in love with through Reece's Rainbow. We hope that our story will help open people's eyes to the beauty and gift that ALL children are. We are all more alike than different!
I'm the father of an eighteen year old son with Down Syndrome. He never had issues with his eyes or vision. However of my four other children, my now six year old James had strabismus and has low muscle tone. We also wore the patch for a period of time. Eventually James did have the surgery and it did correct the problem for the most part. It was scary but the end result was very good. He does wear glasses now but the crossed eyes are seldom a problem any more. Never hurts to get another opinion. Take heart and I'm sure everything will turn out great for your beautiful son. Trey, editor, downsyndrometoday.com
ReplyDeleteLooks like we maybe in the same situation. We just went last month and we are now patching each eye on different days if that makes sense. There doesn't seem to be a dominant eye any more..but they both cross. We are just waiting to see if we are a go for surgery in the near future. Very scary. Yes I don't mind the eye crossing...however for the future it maybe our choice to correct it. I have met one family who had it done and are very happy. I will let you know how our next appointment goes. Ps. How do you keep that patch on, or rather being taken off?
ReplyDeleteI am in the same situation. We took Olivia, 1 years old, to the dr. this past Tuesday. We were told the same thing, almost identically to what you are saying. She does not have a dominant eye so we are patching one eye at a time on alternating days. He said that her vision was equal in both eyes. So she is seeing fine.
ReplyDeleteI am also concerned about surgery. I read about the multiple surgeries that may be needed to "correct" it and in the end it may still just be cosmetic. Our dr. indicated that it would be for medical reasons as well. I have the same worries that you expressed. It seems so hard to know what to do.
We have to patch for 6 weeks and then go back. It was comforting to read your blog today and see that you have the same concerns that I do and know that I am not just over-thinking this.
Tina in TX
tdb@signalpointsolutions.com
I was thinking vision therapy as well, before I read that part at the bottom of your post! I would exhaust all your other options first. I have a WONDERFUL eye doc, Laura Wofford @ Roseville Royo Eye and Laser Center, who just explained to me recently that an eye turn has more to do with the "brain not seeing properly" than with the eye itself not seeing properly. Just something to think about... poor little guy. God bless him.
ReplyDeleteOur daughter Audriana went through the Institues program. She has a brain injury from a car accident she was in when she was four. We started the Institues program on her almost immediately after the accident. In fact, I was doing some of the program with her while she was still in the rehab hospital! (The doctors and nurses there thought I was nuts...but that's another story)
ReplyDeleteAnyway, I just wanted to tell you that although the Institutes advised us against the eye surgery (and I completely 100% agree with their reasoning. I "get it" that it's a brain issue, not a muscle issue) we did decide to go ahead with the surgery a couple years later (while still on the program). Our reason was purely cosmetic. And it was our daughter, actually, then 6 and a half years old, who asked to have the surgery done. After her accident, her right eye turned out to the side. It wasn't subtle. It was very obvious. She got tired of kids always asking her, "Why does your eye go that way?" At the time, my daughter had enough things that made her stand out from the other kids (she walked with a limp, her right arm was tight and was always pulled up and into her body, she had speech difficulties) and so we figured, if this will help her look that much more "normal" -- I hate that word, actually, but I don't know what else to say here -- then it was something we wanted to do for her. The first surgery over-corrected it. Still, it was a huge improvement and she looked much better. A few weeks later we went back for another surgery and that did it -- her eyes were straight again! It was wonderful to see. I had missed her straight eyes.
She continued with the Institutes program and we also had her in an eye therapy program that worked with the brain. It was a vision development program for children. Wonderful program.
She is seventeen now and her eyes are still straight,she has never needed another surgery. Two surgeries did the job. I'm very glad we had the surgery done. The surgery made her eyes look "normal" and then the vision therapy combined with the Institutes program helped her brain to use her eyes correctly. I feel it was a good combination.
By the way, regarding the Institues program, will you start Sophia on their program, too?