Our Battle with Ptosis - Part 1

Every once in a while I like to get a little serious on our blog and clue people in on what's going on in our lives. On occasion, I like to educate people based on things that we are dealing with. Today is one of those days. I'm taking a little break from creating healthy passover recipes to get a little serious.

Have you ever heard of ptosis? Paris Hilton has it. No, it's not an STD. It's an eye condition sometimes referred to as droopy eye. If you have ptosis, it basically means you have a droop eye lid.

You know who else has ptosis? My son.

For the first few days after his birth, the hospital and all of their doctors kept saying "it's an after effect from birth, it'll go away." When Yoav was in NICU, one of the top pediatricians noticed that his eye opens more when he eats but she didn't know why. She just thought it was funny. She called over every colleague she could find to look at the "funny baby". No one told us that his party trick wasn't normal.

Two weeks after taking Yoav home, we went to see a pediatrician about his eye. She said the same thing the hospital did but this time I asked her "what happens if it doesn't? When do I notify you that it hasn't gone away?" Her answer "give it a week - if it doesn't go away, come back and see me." So, we did. Then she nearly yelled at my husband for not taking him to a pediatric ophthalmologist. He had to remind her that she needed to refer us to one ... and she did.

Within five minutes of seeing the pediatric eye doctor, she said "he has jaw winking ptosis." I asked her what it is and she said "google it, you'll find a better description of what it is." That is so NOT the answer I want to hear from a doctor but she was right. I learned that if his pupil is more than 50% covered by his eye lid, he could lose his eye sight.

It's a very serious condition!

We have a follow up appointment with her next week and I'm terrified. I'm not scared that she'll tell us he needs surgery. I'm scared of the opposite. In my research, I've read that it's uncommon for a child under the age of four to have this condition corrected surgically.

In an age where kids get bullied for wearing the wrong t-shirt to school, I worry that Yoav will be ridiculed for his droopy eye lid. I can't tell the future but I've seen kids made fun of for less.

No one knows what caused Yoav's ptosis but the lack of muscle in his eyelid and his mis-wiring in his jaw is a scary thing. I also hate having to explain to every Tom, Dick, and @$$hole why my son looks different. If you think it's hard to explain in English, try doing it in Hebrew.

I'm lucky to have supportive parents, siblings, and friends. My Dad found a great pediatric ophthalmic surgeon near him in Florida and my Mom has been an awesome shoulder to lean on! My friends and siblings keep bugging us for more pictures of Yoav - even with his funky eye, he's still a cutie ... and he already knows it.

There's actually not much written about ptosis on the interwebs - I found a few personal blogs that recount their tales of dealing with ptosis and the stories are all the same for the most part. Unfortunately, even with the surgery, there's no guarantee that the muscle will improve and there's no guarantee that he won't need another surgery a year after the first one. It's a scary thought for a parent! So, we just quietly pray and ask G-d for help.