One-Year-Old Update

Well, Danny is now a year old and doing great. We went to opthamologist last week and his vision is great, still no need for glasses.

Cosmetically, there are days when his eyelid looks noticeably droopy and I get people asking me what is wrong with his eye (everyone asks if he has a lazy eye for some reason. Nope, just a lazy eyelid). But some days they look exactly the same. I think if he is tired it is more noticeable. Also, when he is looking up at me from my lap, sometimes he looks creepy. His right eye disappears behind the eyelid so just the white is showing. BUT normally he looks fine.

I don't check this very often so if you would like to ask me a question please feel free to email me at tiffanynvaughn@gmail.com.

Here are some pictures. The flash makes it worse because he kind of squints, but I tried to get some good day eye pics and some bad day ones. This first one was taken in July 2009 in a dark movie theater:

Below: This is also July 2009 but his eye looks normal

Above and Below are from June 2009.

These aren't the cutest pictures but I just wanted to show you what his eye looked like, so hopefully you can tell.

Post-Op Appointments

Today we had our post-op appointments.

First we saw Dr. Patel, the surgeon. He said everything looks good. He also said that Danny's eyelid was opening more when he lifted his eyebrow, which when he said that it was, but I hadn't noticed before. I asked about the swelling and he said that would decrease over time. Since those are muscles he isn't used to he strains them more, thus swelling occurs. I'm not convinced, though, since he had the swelling before the surgery. Dr. Patel again told me that this was a temporary procedure to get the eye open so the vision could develop. The silicone sling will lose its elasticity over time and Danny's eyelid will start to drop more. When Danny is 3 or 4 they will do another permanent surgery. We will have to see Dr. Patel again in 4-6 months.

Next we went over the Dr. Hoffman, the opthamologist. The nurse tested Danny's eyes using a Teller Acuity Test (http://www.stereooptical.com/html/teller-acuity-cards.html). She said his vision was good. The doctor looked at his eyes and said everything looks good. He doesn't need any patching or glasses. His eye is staying moist and I just have to make sure it stays that way. We have to see Dr. Hoffman again in 2-3 months.

Two Week Update

It's been two weeks now and the "drops" I have to put in his eyes is really an ointment. It's called "Refresh PM." It's a pain because whenever he sees the stuff coming toward his eyes, he squints them shut, and I end up getting the ointment on his eyelashes instead of his eye. But after a little stuggle I usually get it in. And it's not that much of a pain because I only have to do it a few times a day.

Did you notice I said he squints his eye shut? It closes a lot more than I thought it would. He can squint it completely shut. When he sleeps it still is slightly open, but not too much. A lot less then right after his surgery. And when he is tired it looks like his left eye is the one that has a problem because it is closed and the right eye stays open. Overall, though, he looks a lot cuter. If he is awake and looking up or forward, you can't even tell he ever had a problem. I do try to keep his face out of the wind more and ease him into brighter light so his eye can adjust, but it seem to bother me more than him.

His right eye is still swollen but it is not surgery related. Who knows if they will ever figure out what is causing that.

I keep reminding myself is that this surgery was just to get his eye open so his vision could develop. I am going to go over all the surgery options with the surgeon before doing the permenant proceduce to see if there is one that will let his eye open and close more naturally.

We are having our post-op follow-up appointment November 19th so I will post more then.

Post-Op Day 2

By day two, Danny was back to himself, only he seemed slightly happier. Although his stitches concerned me , he seemed to have no problem with them. I think I gave him regular Tylenol but just as a precaution; he wasn't acting like he really need it. It was so nice to see him with two open eyes!

Frontalis Sling Surgery

The before picture: Pre-Surgery:

about 20 min post surgery:

In the car on the ride home, about 45 min post surgery:

Sleeping in the car on the ride home:

Home about 2-3 hours post surgery:

Sleeping about 3.5 hours post-surgery:

These are pictures from Danny's Frontalis Sling Surgery on Wed., October 29th. My mother-in-law, Elaine, drove us down and stayed with us. She also took most of the pictures for me. We checked into Primary Children's Hospital in Salt Lake City at 6:30 AM. They took him back for his surgery about an hour later around 7:30 AM.

For the surgery they did 2 pin prick incisions on his eyelid and three little ones above his eye. The ones above have 2 stitches. They inserted a silicone sling that will help him open his eye. Dr. Patel, his surgeon, said everything went well. He said that his eye will be open when he is sleeping because of the sling but eventually it will not be open as wide. I will have to give him eye drops before naps and sleep time. For three days I will have to put an ointment on his incisions and on his eye. And he will take amoxicillian for a week to prevent infection (if it gets infected they have to take it out and put it back later). Since the sling is artificial (silicone) it will have to be replaced with living tissue. When he gets "bigger" they will take a tendon, I think, from his thigh and put it in his eyelid. If the silicone one becomes too flexible before they can do the permanent surgery, they will have to replace the sling with another temporary one.

About an hour later they called me into recovery. Only one person is allowed in there so I don't have any pictures since I was holding him the whole time. He was pretty cranky in there. I was only in there for about 15-20 min before they wheeled us into post-op, which is just another recovery room. I nursed him in there and he ate well. He was still cranky though because they kept messing with him and checking him out. But after they got the IV out and we were changing into his pjs he became more awake and alert, although you could tell he was drugged. We were on our way home by 10:00 AM. When we got home an hour later he was awake and happy. He stayed awake until he had tylenol with codene at noon.

So...what's next? We will see Dr. Patel again in about a month to make sure everything is going well, and also Dr. Hoffman to make sure he can see out of the newly opened eye. I'll try to keep an update on his recovery.

Diagnosis

My son, Daniel, was born on July 19th, 2oo8 with Congential Ptosis or a droopy eyelid. All I found was one blog with another mother's experience and it was much different than mine, so I thought I'd share here.

Week of July 23rd: A week after Danny was born he still had only peeked out of his right eye a couple times. The eyelid always looked totally relaxed even when the other one was open. After looking online we thought it was probably ptosis, but since you can't really find anything, we weren't sure. We went to his pediatrician who didn't know what it was and sent us to an opthamologist. They "couldn't" get us in for 3 weeks.

August 14th: Dr. Felt, the opthamologist, thought that his eyelid looked swollen. He said that is not how ptosis usually presents so he wanted us to go to a pediatric specialist to see if there was a mass in his eyelid keeping it from opening. Dr. Felt said he wanted to get it checked soon so they were able to set us up for the next week.

August 22nd: We went to Primary Children's Hospital and saw Dr. Hoffman who thought there might be a mass, but since the treatment was steriods, wanted to be 100% sure. He said we needed to get his eye open soon, though, so that he could develop vision there. He had us schedule an MRI. Up to this point, we didn't have insurance and were paying cash but my husband, Travis, had gotten a new job with great benefits and those started Sept. 2nd so we asked if it was fine to wait a couple weeks (like they would have got us in sooner anyway...) and it was. He said he would call us after the MRI to see what the next step would be. We also were told to patch his good eye a couple hours everyday so he could develop vision in is right eye. (We tried this a couple times, but newborns don't stay away a couple hours at a time. If fact, Danny, at this point, barely stayed away for an hour. The couple times we did try to patch seemed pointless. The patch didn't stick good and he would just close the droopy eye and fall asleep.)

Sept. 4th: Danny had an MRI of his right orbit to check for a mass or nerve damage, like signs of a seizure. They had to put him out and everything, and even after insurance it still cost almost $600. While in the recovery room the doctor who performed the MRI came and told me everything looked great and there was no mass or nerve damage that they could see, only superficial swelling. Great news except we didn't know where that left us on getting his eye fixed.

Week of Sept 11th:We waited a week before calling Dr. Hoffman to see what was going on. We left a message and they next evening had a message on our phone from him that said he would try calling again later...

Week of Sept. 15th:We still hadn't heard from him so I called again and he was on vacation for a week so I left a message and they said he would call me when he got back.

Week of Sept. 22nd:After STILL not hearing from the doctor I called again and said it has been three weeks and I still didn't know what was going on with my sons eye after his MRI. I sort of pushed them this time and the nurse became an advocate for me but said they would have to find his chart and then call me back. Half an hour later the doctor called. "We really need to get that eye open," he says. Yeah, thanks for calling me back so soon so we could do that, idiot. Anyway, he said that just because the MRI didn't show a mass doesn't mean there isn't one so he said scheduling would call me in just a minute set up an appointment with someone for an ultrasound on his eye, to be followed immediatly by an appointment with him. They did call right away this time and told me to go to Dr. Harry, then Dr Hoffman on October 1st.

October 1st:I showed up at Dr. Harry's office and they told me I was scheduled for the day BEFORE! I said, I know they told me today. She checked her schedule and said they could fit us in at the same time. I asked if she could call dr. Hoffman's office to see if they also had me for yesterday. She was really sweet and called for me. They did have me for the day before but said they could fit me in at the same time my appt was. Funny how if you schedule before it take weeks to get you in but if you just show up they can just get you in right away... Dr. Harry did the ultrasound. He just rubbed the tool on his eyelid like they do to your belly when your pregnant. He said it looked normal and sent me to the next doctor. Doctor Hoffman decided if there was no mass, the swelling was irrelevant and it was ptosis. He wanted to get us scheduled for surgery right away and sent us to his colleauge who specializies in children's opthomology and plastics to have him look at it and get us scheduled. This doctor was at Moran Eye Center which is connected to Primary Children's Hospital where I was. They were also able to get me in right away without an appointment. He looked at his eye, took pictures, and told me about the procedure. Then we scheduled Danny's Frontalis Sling surgery for October 29th (which I made sure was the earliest they could get me in)