Tuesday, October 18, 2011

One Year Post-Op (2nd Time Around)

Thought it was about time to post more pictures. Danny is now 3 years old. It has been a year since his second surgery and things are looking great. He still has no vision problems. We had a check-up with the surgeon last month. He said things are working good and that we should come back in another year.

Most of the time, his eyelid looks fine. When he is looking straight ahead, the only noticeable difference is the crease in his eyelid (which is missing on his ptosis eye). When he looks up, the non-ptosis eye is open wider. When he looks down the ptosis eye is open wider.

Danny's favorite silly face to make is one where he closes his ptosis eye and screws up his face, so in most of my pictures is eyelid looks extreme, but it's not. I asked him if his eye ever bothers him and his looked at me really confused and shook his head no. Sometimes I get people asking me about it. Most of the time they assume he just bonked it or something. If kids ask me about it, I tell them that he was born with it almost all the way closed and had to have surgery to get it open, so now it looks a little different. At home we don't make it a big deal. We joke about his silly eyelid sometimes. Today we were looking at newborn pictures and Danny said, "It's Pirate Dan!" Hopefully he will be able to continue that carefree attitude about himself.

So for these pictures I took 2 from the same day and tried to put them side by side so you can see how different his eye can look on the same day.


Mgeorge said...

Our daughter is 3 1/2 years old and about to have her 3rd surgery in 2 years for ptosis. They have mentioned the sling method for us to consider, up until now they have just gone in and and cut the lid to raise it and stitch it up. She is only the 2nd person that our surgeon has had to operate on more than twice for ptosis. How have you liked the sling method? Our surgeon does not favor it but said we could look further into it and make the decision for ourselves. I was looking it up and ran across your blog and am so thankful to have found another mommy that is going through all this. Up until now I have not seen another child with this other than our daughter.

Anonymous said...

Thanks so much for posting this. My 12 motnh old son just had the surgery 3 days ago and it's been really hard for me and my wife, but we're managing, and Aquiles is doing great.

The doctor keeps telling us how much easier it is for babies to recover from any surgery than adults.

I hope Danny keeps doing great, hope the best for you all!


Angel and Val

Susan said...

Thanks for posting updated photos. I had a hard time finding them at first but eventually did. It's so nice to see the final result.

Anonymous said...

Hi my 5year old son had this procedure done a week and 3 days ago , we have noticed that the top stich were the sling is attached to the brow muscle above the eyebrow we can feel and see a lump/protruding and is quite obvious is this normal? Or is the sling detaching(if that can happen) , my son is saying it is sore were the lump is but as it's only been over a week we thought it could be normal until it all settles down? We have had our week post op review but the lump is far more obvious as days go by and we're not sure weather to contact the Doctor or wait until our next appointment at the end of the month.

Also id like to say thankyou for putting this blog up as it really helped us in the days leading up to our son's operation . I hope your son's eye is still doing well since his op .

L&k in the UK

Brandi said...

Thanks you so much for your blog, I havent been able to find many people that speak so openly regarding their kids condition. My daughter who is now 15 months was diagnosed as a baby with Ptosis and had her 1st surgery at 1 year. Although her eye isnt near perfect the surgery did make a difference. When we went back for post op check up it had loosened quite a bit I thought but the surgeon says it did what it was suppose to allowing the eye to be more open to develop properly. They said that we may go back @ 4 years to see if we neeed a more cosmetic surgery done to make the appearance more exact to the other eye, but for now just continue to see the opthomologist to focus on her vision. She can sometimes look as if nothing was ever done to the eye like there was no ptsois and at other you can definately tell. Hopefully as she grows we'll be able to see where we're at with it even more. Thanks so much for sharing!!

Anonymous said...

Thank you so much for your posts. Our 4.5 month old son is having surgery on Thursday. Although I am very happy with our surgeon I was so dissapointed with the lack of information I could find. Thank you for the detail you put into your posts, it has helped me feel a lot better prepared for surgery. I am so glad your sons surgeries have gone well and hope ours go as smoothly.
Thank you'

Anonymous said...

Thank you for posting your story. A few days after my baby girl was born I knew there was something wrong with her eyes, I myself was born with ptosis in both eyes so I was very aware what to look for. My heart totally broke when after a week of bring her home from the hospital knowing things just weren't right and also knowing what horror she would have to inder though out her life with surgery after surgery and the teasing, bulling, pointing fingers, asking what is wrong with your eyes, cruel comments from children and adults which at the age of 32 I still have the teasing from other adults....pretty sad I know.

At 2 weeks old I took my daughter to our family doctor about my concerns about her eyes, he just seemed to have no time and was told no doctor would even look at her unit she was a year or older. So I took the matter into my own hands, after calls to othe doctors, offices after offices and then finally I made a few connections that put me on the right road.

To make a long story short, we are just waiting on a set date for her surgeries. I am thankful I took the matter into my own hands and got the process rolling. Everytime I think about her having to go through all the pain and suffering to have this all done to her makes me feel so bad, but greatful to have surgeons around that are able to help my little girl out.

Thanks for all the above posts, makes me feel positive this is the right thing to do.

- Kristy

Social Conscience said...

My daughter was born with congenital ptosis in her right eye. I knew right away moments she was born that something was wrong. She is what is know as my mirror twin. I was born witb Ptosis in my lefy eye, and had a levetar recession when I was 4 years old. My daughter is turning a year old tomorrow and had just haf her first ( and prayerfully her last) frontalis sling surgery. I found an excellent Pediatric Occular Plastic Surgeon named Dr. Robert Goldberg in Los Angeles, California. I actualy stumbled across a medical journal article he wrote online about an "Incisionless frontalis suspension" I took my daughter in to see him and two months later my prayers were answered. The surgery took place this last Wednesday on 9/11 the procedure was just over an hour long. My daughter was very fussy during recovery but she was starving from having had to fast the night before the surgery. Once she had a bottle she was fine. I gave her Tylenol (over the counter) once we arrived home as well as applied tbe antibiotic ointment to the inside of her eye, and she has been fine. With I. Hours she has been crawling, rolling, jumpint and acting like a normal active 11 month old. She has had no pain thus far and the eye look really good. Tbere is virtually no scarring at all,only two tiny punctures hidden in the eye brow. So far the only side effect is her eye remains open when she is asleep. But we can live with that lol. Thanks for sharing your blog. So glad to k know that we are not alone. we arecelebrating her first birthday tomorrow and she has received the best present of all...sight in both eyes!!!

suzie duffin said...

My little boy (5) just had the sling done,he also has restricted upgaze which meant they had to reduce the amount of "lift" to make the eyes as even as possible. I really loved your blog it was very informative- thanks for sharing!

Anonymous said...

My 6 month old just had surgery on both eyes and it's been incredibly difficult to see her like this. Looking at your post has been uplifting and encouraging. Thank you so much for posting these pics!