Elliot eye update

It's been a long time since I've updated the blog on Elliot's eyes.  The last few appointments have been good.  A couple weeks ago we went and we actually found out the crossing has improved somewhat!  I thought it was worse this summer, but it has really improved in the Fall.  We think it may  have been worse in the summer because he was just tired more often (swimming all day), as his eyes do cross when he's tired.  Dr. Olitsky did discover an astigmatism, but it's not that bad yet and he doesn't need glasses.  Woot woot!

His new laser finger beamer entertained him in the dark parking garage traffic jam 

Such a good boy was a great patient and talked Dr. Olitsky's ear off

Eye Update

Elliot had an eye exam yesterday. I hadn't noticed them drifting outward as much, but figured I was just used to it or not paying attention. Actually, they have improved a LOT! They amount they drift is a lot smaller. It went from 12 degrees to 8 degrees. We don't see it as often because it is a lot easier for him to control now. Also, when he does it, it isn't as dramatic. So happy to see him improving! He still doesn't need glasses and we will check them again in 6 months, unless we see something change.

So happy that these are the only "ga-ga" that E will be wearing anytime soon :) Well, unless you leave your sunglasses at our house. Then they are fair game, too.

Elliot eye update

I forgot to blog that we went to Elliot's eye doctor on Wednesday for a check-up. We were following up only 2 months after our last appointment, because of the development of exotropia (you can click on the tag "eyes" below to see all the updates in order if you aren't up to speed on this). Anyway, his eyes still do wander outward some everyday, but it's not often enough to warrant surgery. He works really well to control it and use his eyes together. He is seeing well and it's obviously not affecting his development. That boy is running (and now climbing) all over the place! We don't have to follow up for another 6 months!

Oh and we were happy to see Dr. Olitsky named as one of Kansas City's best doctors! (Noah & Elliot's pediatrician Dr. Waters is on the list, too.) We feel very blessed. It's clear how good he is when we have to see a resident first and watch them do their assessment and then have Dr. Olitsky come in. He's awesome! And Elliot is doing fantastic!

Elliot's eye update

Today we went to the opthamologist for a follow up. As I posted about before, we've noticed Elliot's eyes drifting outward (exotropia). We emailed his doctor about it in the past and we were told to just keep an eye on it until this appointment.

Well he definately saw what we were talking about. The good news is that he does it with both eyes, so we don't have to patch. If he was doing it with one eye more, the other eye would get stronger and we'd have to patch the "strong" eye. It wasn't bad when he was much younger, but doing it now would not be fun. The other good news is that Elliot is working hard to bring them back into focus and keep them straight. So surgery isn't necessary right now.

The bad news is that it can continue to gradually get worse, so he wants to keep a close eye on it. We will see him again in 2 months. If we notice it suddenly getting worse before that, we are to call in for an earlier appointment, but it's almost always a gradual thing. He said surgery is not inevitable, but a "fair amount" get worse and need it. Blah.

Bu-bye OT!

Elliot has been caught up developmentally for awhile now. With our IFSP review coming up in January with our service coordinator from First Steps and our OT from CCVI, our OT told us that I would probably have the option of stopping therapy or at least reducing it. So, our OT mentioned Elliot and how well he was doing the director and she suggested discharge. CCVI's mission is to help visually impaired children function in a sighted world. Well, Elliot is no longer visually impaired and he is functioning developmentally at his appropriate chronological age in all areas. We called the service coordinator and decided to just stop. So we are DONE! YAY for Elliot!

We will still be in the First Steps program until Elliot is 3. Once a month they will call me just to check and see if he's doing ok. Twice a year they will come out and evaluate him to be sure he's still on track. The reason for this is if he had a setback and required surgery again, he would immediately be able to start therapy and wouldn't have to be screened, etc. Plus you have to be significantly (50%) delayed to get into the program. But, if he had a setback we could start him back up to prevent a problem, rather than waiting for it to get bad. I really don't think that will happen though.

E's latest milestones include standing alone for several seconds and climbing up the stairs. Noah helps encourage him to get up the stairs and gets mad at me if I even touch his back "Let him be, mom! He wants to do it himself!". He cheers for him when he gets to the top. Such a good big brother teacher. He LOVES water, whether it be the bathtub, pool, dog dish, humidifer, and yes, I hate to say even the toilet bowl has been used before, much to my horror. E's eyes still wander out sometimes, but it is when he's tired and isn't an issue at this point.

We're so proud of Elliot!

Elliot Eye Update

I think it was early October that my sister noticed one day that Elliot's eyes would sometimes be misaligned. One would turn out. He was super tired that day and I dismissed it. I thought he looked like he was just staring off into space. We had a big day full of activity and he had to just nap on the fly (not well).

Well I have noticed it a few times recently myself. It's usually brief. And I do think it's mostly when he's tired. It's hard to notice, because you can think he's just looking off to the side. But, if you pay attention, one eye is straight ahead. Anyway, I emailed our Opthamologist with some picture examples yesterday and this is his response.


Unfortunately, a later consecutive exotropia (outward turning) is not uncommon following an initially successful surgery for infantile esotropia. If it is happening infrequently (usually when tired), no treatment is generally indicated. Sometimes it becomes more frequent and in some cases surgery may again be needed. I think the current appointment is fine and it would be good to monitor it and see when and how often it is occurring so we can discuss this at the appointment.

Thanks for the update.

So we are just praying it stays infrequent enough to not need surgery. It was hard the first time, but he was a trooper. He's now older, mobile and just much more spunky. Don't want to go down that road. Please pray for his eyes.

You can see what I'm talking about in the post 2 below called "New Game".

Elliot's eye cyst is gone!

I forgot to mention on here that we noticed over a week ago that Elliot's eye cyst is completely gone. There is no redness and no bump. Even though it was only cosmetic, I am so thrilled it is gone!

Perfect Eyes

We had our 6 week follow up appointment with Dr. Olitsky today. He confirmed what we already knew. Elliot's eyes are perfectly straight and he's seeing great!

We did notice the first week in August that Elliot had a red area on the inner right eye and it has a small bump on it. I emailed a picture of it to Dr. O and he said it was nothing to worry about. He confirmed today it is an epithelial inclusion cyst. It's harmless. Sometimes, they go away on their own. Sometimes they don't. It's not worth putting a perfectly healthy baby through sedation and surgery to remove it though, so we don't plan on it. Hopefully it will go away on it's own. If it doesn't and down the road it bothers him, I'll have it removed (when they are older they just use eye drops to numb it and do it quickly).

We don't have to go back for four more months! Ahhh, a visit to CMH just in time for flu and rsv season......

Here's Elliot & Dr. Olitksy:

Elliot update

Today we had our first Occupational Therapy session in almost a month. We had vacation, then our OT had vacation and then it was school break. Anyway, the delays he had that were secondary to his vision are no more. He has been making up for lost time and I have zero concerns about his development. He is not doing the traditional hand-knee crawl yet, but he is very proficient in his belly crawl and is all over the place. He is sitting up great. He is just doing everything you'd expect at this age. I was kind of hoping we could stop doing OT altogether, since finding a babysitter for Noah is hard now that school is in session. She agreed he's doing great and if evaluated now wouldn't even qualify, but doesn't want to stop so soon after his surgery. So for now, we'll keep it up. I will take and post a video of my man doing his belly crawl this week.

We see Dr. Olitsky next week for his 6 week follow up. I am confident his vision will pass with flying colors. He does have a red area in his inner right eye that kind of has a small bump on it we noticed a few weeks ago. I emailed a close up picture of it and he mentioned three possibilites, none of which are anything to worry about in his opinion. So while I'm not worried, I am anxious to see if it'll ever go away. Also, sometimes his right eye will water and seem irritated. It isn't often or too bothersome, but I'm curious what it's all about.

Here are some pics of my cutie pie, sporting his new longer and curlier hair-do

Sweet baby

Enjoying some tummy time. He's gotten so much more mobile since his surgery. He is learning to scoot forward, but it's still a frustrating task. He has the visual motivation to get things now and it's fun to watch. He mostly spins around and rolls a lot.

His eyes look great. The right one is still a little red, but not noticeable to anyone who isn't looking for it.

Elliot's Big Day

Elliot's big day actually started the night before, as we kept both boys up late hoping they would sleep in the next morning. Elliot couldn't eat after 4:00 AM, and surgery wasn't scheduled until 9:00. Five hours is a long time to go without eating for a 5-month old.


We played trains for a long time and E can now stand up holding onto things for several seconds. He would grab a train off the tracks, attempt to eat it, then hurl it on the floor and get mad. After that, we went on a long walk with Wally and played at Border Star's playground. A cool front came into Kansas City that night and we could have stayed out forever. Unfortunately, we didn't think to bring money or we would have eaten dinner out too.

It worked perfectly to keep the boys up late, as E stayed asleep until about 20 minutes before we left for the hospital and Noah stayed asleep until we were gone. Elliot and Mandy had some last minute hugs at the house before leaving.

We checked into Children's Mercy and got Elliot dressed in his hospital gown - looks a lot cuter on a little baby than it does an adult.

We spent some time in a pre-op room, getting vitals and giving information to the nurse and anesthesiologist before surgery. We also had time to play. Elliot did so great for not eating - he was barely fussy at all, and had fun playing with the toys and with Mom and Dad.

These eyes will be fixed in another hour or so.

We had a brief consultation with Dr. Olitsky right before the surgery.

Some final hugs and kisses before surgery:

We walked him back towards surgery, and he continued to be happy as can be. The nurse decided to hold him rather than put him back on the bed, which is much less scary for a little guy. They promised us they'd gas him right away to put him out so he wouldn't be awake without us for long. They also waited to start his IV until after he was out. All little things that make a huge difference for Elliot. I still think CMH needs to change their policy and let parents be with their kids until they are asleep in the OR. But, that said, they did a wonderful job and treated Elliot like the sweet baby he is and not just a patient to be operated on.

Less than an hour later, he was done. Dr. Olitsky came into the waiting room to tell us it went well, and that it would be another half hour or so for him to wake up before we could see him. When they brought us back to the recovery room, he was being rocked by one of the nurses rather than just laying in his bed. It was very comforting to see him being loved on. They immediatly let me have the chair and put him in my arms to nurse.

His eyes were swollen and a little bloody. We were told what to expect, but it is still a little heartwrenching to see at first. We were also told to expect his tears to be bloody the next 24 hours. I'm happy to say, our son is so amazing, he did not cry any tears afterwards. So we never experienced that.

As you would expect, he was pretty groggy for awhile.

After some sleep, we got our first good look at his eyes post-op. The sight is both a little shocking and very gratifying. His eyes are finally straight!

He cuddled with Mom and slept most of the day, but he quickly adapted like nothing happened.

Sporting his new CMH t-shirt.

Beautiful, straight eyes.

Day 2 - Going for an afternoon hike.

Elliot had just woken up....

Day 3 - enjoying some time outside:

Day 4 - the redness is really fading out now.

The difference pre- and post-surgery is night and day. The afternoon of his surgery, after several hours of sleep, he woke up happy and was immediately tracking objects from clear across the room and smiling at us from several feet away rather than from several inches. Over the next couple of days, his activity has increased dramatically as he is loving his newfound vision. His world is so much bigger now, and he is taking it all in at once. Most of all, he loves watching his brother.

Thank you to all of our supportive family and friends for your prayers. They obviously worked!

Elliot did great

This is just a quick note to everyone visiting the blog looking for an update on Elliot's eye surgery yesterday. Paul and/or I will blog about it probably tonight, but just wanted everyone to know it went AMAZING! Elliot was a trooper and spent most of the day smiling. His eyes look great and he is already focusing and watching things from across the room. I posted some pictures on facebook last night because it's really fast and easy (and blogger isn't!). Thanks for your prayers, and we'll update soon!

NO MORE PATCHING!!!

Woohoo! I'm so happy to say that we are finally done patching Elliot's eyes! He was such a trooper throughout the whole thing. Especially, the past week when we were doing it for all waking hours. His eyes are totally equal now. It has been so nice to see both of his eyes today. And I think he's happier without the patch on too.

The countdown to surgery is on. It's a week from Friday. I'm so sad he has to go through it, but really excited for the results.

Elliot was ADORABLE in his stylish little patches, I think we can all agree, but I'm glad to just see his whole face again.

We have a surgery date!

The patching has almost done it's job. The eyes aren't quite equal yet, but close. Instead of 2 hrs a day of patching, we are doing patching now for all waking hours, but only for a week. Actually less than a week. We have another appointment on Tuesday of next week and we expect his eyes to be equal by then and ready for surgery.

We have scheduled surgery for Friday, July 17th. We won't know the time until they call us to confirm, but usually they do babies first thing in the morning. It's same day surgery and he'll go home that day. His eyes will be red for a week, but usually babies don't have much pain from this procedure. We can give him tylenol if he needs it. They can do surgery by weakening one muscle and/or tightening another. They are weakening one. This is not painful, whereas tightening a muscle does cause pain. He will have to be NPO for some time though and have general anesthesia to have it done. :( He'll have a follow up appointment the following Monday.

The risks for having to do another surgery are pretty low short term. There is a 5% chance of having to do surgery again if the eyes are not properly aligned. To acheive binocular vision he has to have them perfectly centered within a 5 degree room for error. There is a much smaller, but serious risk of infection. If an eye gets infected it's very serious and affects vision permanently. It only happens rarely and I'm confident it will not happen to our E. Later in life the eyes can drift again and surgery again could be needed, but the chances of that happening are lower the younger we do this surgey. Elliot will be just shy of 6 months old and that's a great time to do this.


He did great his first full day of patching. His skin was red when I took it off in the bath, but calmed down right away with this California Baby Calendula Cream my friend told me about. I was amazed at how it instantly took the redness away and calmed his skin.


I'm really getting excited that surgery is so close. All I can think about now is getting to see his eyes straight and watching Elliot as he gets to really take in the world around him. Especially being able to watch Noah play. He gets a kick out of Noah, when he's up talking to him, so it's going to be fun to see his reaction once he can focus on everything he does. I can't wait! I'm sure as surgery gets closer, I'll be a nervous wreck, but right now, we are just really happy.

Elliot's development

Elliot had a functional vision assessment as well as an assessment of his overall development at CCVI (Children's Center for the Visually Impaired) this week. Kansas City is very lucky to have this awesome resource available to the community. I've known about it for years since we've participated in the Trolley Run for so long, which is their number one fundraiser every year. But, I never thought I'd need their services.

What we learned about Elliot's vision wasn't a surprise. He focuses on objects as small as a cheerio at 6-8 inches, but loses them as they move further away. His peripheral vision is poor and only sees out about 45 degrees. At this age he should see out 180 degrees. It makes sense since his eyes turn inward. He has poor depth perception since he lacks binocular vision. This causes poor hand-eye coordination, and as he learns to walk will cause poor foot-eye coordination as well.

Developmentally he scored normal socially. Cognitively, Gross Motor and Fine Motor were all very scattered, but overall delayed. The areas in which he was delayed were secondary to his vision issues and nothing else. At this age development is highly visually motivated. CCVI recommended weekly occupational therapy from an OT familiar with visual issues. They will provide the OT.

On the spectrum of eye problems, his is low. They see much worse. Elliot is also very young and everyone is quite confident he'll catch up and be just fine. We just don't know how long it's going to be before his vision is normal. Surgery is still up in the air. And sometimes it takes more than one surgery. Hopefully it will be sooner than later, successful and we can drop the OT soon.

We have our next Opthamologist appointment Wednesday. We should find out how well his eyes are responding to the patching and hopefully, if they have equalled out, we can discuss surgery.

Eye patch blues

It makes Mandy cringe each time she has to take Elliot's eye patch off. E takes it like a trooper - his eyes water up, but he doesn't cry. We'll be glad when the patching is done with, although that will mean surgery is next on the agenda, which brings its own worries.

(and yes, those are his toes in his mouth)

The last guy that messed with him...

...ended up with his own eye patch.

My tough E - small but mighty:

Aye Aye Matey

The first hour I did when he first woke up. He did pretty darn good. The second hour that I did later in the day, he was really frustrated :( So I think I might try to just do as much as he tolerates first thing, then make up the rest later.

Also, pulling it off is like pulling off a bandaid. Not only did I do it twice, but Noah did it once while I was out of the room. We had a little chat about that one. I will try a warm washcloth tomorrow. I am worried it could pull out his eyebrow hair :/

He sure looks cute though, doesn't he?

Elliot's Eye Update

Today we had our appointment with the Pediatric Opthamologist at CMH. It didn't take him long to diagnose Elliot with Infantile Estropia. This is corrected by surgery (normally between 6-9 months of age). However, Elliot has developed Amblyopia in his left eye, which is pretty common. In order to have good surgical results, we need to correct this first. We will begin patching Elliot's right eye for 2 hours a day starting tomorrow. At this young of an age, we should see results in just a few weeks. His eyes will still cross until he has surgery, but he'll start crossing the right eye more and using his left eye to focus as much as he does his right eye. Once this is acheived, we'll schedule surgery. Our next follow up appointment is on July 1st.

Pictures of our super cute Elliot rockin' his eye patch are coming. You can be sure, there will be no plain white patches for our boy. We'll have an array of cool designs for him to model everyday. I think I'm going to try to do an hour in the morning when he first wakes up and is happy, and then do another hour in the afternoon, so he tolerates it better and his eye doesn't get too fatigued.

Paul snapped a couple of pictures. One before and one after. I look just as pooped as Elliot after. I pretty much pulled an all nighter with Elliot in the lazyboy. He got a cold and could breathe better upright. Between that and having his eyes dialated/examined, he conked out pretty quick.

Elliot's 4 month appointment

Today was Elliot's 4 month appointment. Here are his stats:

Weight: 16lbs 1 ounce (75%/maintaining same growth curve)
Height: 25 1/2" (70% - up from 50%)
Head: 41 1/2 cm (25-30%)

Dr. Waters immediately noticed his eyes when he saw him. His instinct is that it is not a brain problem, but a muscle issue (correctable by surgery). Elliot is meeting all his developmental milestones (except grabbing a toy in front of him, which is secondary to his vision issue). He looks normal. There are just no other issues to go along with this, and that is good.

Just to be proactive, he had his nurse set up an MRI at Children's for June 9th. In case the opthamologist does want one, we are almost 2 weeks ahead by scheduling it now. We're hoping it's a muscle problem, and I'll just cancel the MRI after the June 2nd eye appointment.

I am pretty sure it's not Duane's syndrome after studying old photographs. Duane's is present from birth, and I have photos that contradict that diagnosis. This is huge, because Duane's can't be cured.

I love his big grin

Blowing bubbles

Hee hee Waiting today at the doctor's office. He's found his toes!