Scleral Shell Update

When it was determined that my son’s eye wouldn’t turn out to be a functioning globe, we started the process of getting him a scleral shell.  I didn’t know anything about scleral shells or who made them (Occularists) or how it was done.  I found very little information on the internet.  So, I decided that I would cover Mik’s quest for a normal looking eye in this blog.  If you came here because of the scleral shell tags, you’ll want to read all the posts under my eye injury category.   

Mik wore his shell through the end of the school year.  After one trip to his retina specialist in the late spring, he was put on antibiotics because his eye was red and gunky.  His eye didn’t seem to clear up with treatment so I called the Occularist to find out if there was something we were doing wrong in cleaning it, etc.  The lady that made our shell was no longer at this office so we went in to meet with Jim. 

I’m a little irritated to find out that the quality of Mik’s shell was not as good as it should have been.  According to Jim, the redness and gunk was more likely to be from chronic irritation because the shell was not as smooth or as well polished as it should have been.  Jim did a re-polish and sent Mik home to wear it for a while to see if all was well.

Truthfully, Mik hasn’t been wearing it because it is summer and he is swimming all the time.  We chose to take it out while he is swimming and its been easier to just not put it in at all.   The couple of hours he did wear it over the summer, it seemed like the situation wasn’t any better.   His eye turns blood-red when he wears it and he started complaining about it feeling like it was pinching him. 

This time when we returned to Jim, he decided to grind down the edges and suggested that we gradually increase his wearing time until we get to 6-8 hours a day.  Just like with contact lenses, this will trick the eye into accepting the shell as normal and will not get irritated when the shell is in.  The adjustments that Jim made to the edges of shell makes it smaller so it doesn’t sit so far under the eyelids.   

I want Mik to have a prosthetic that he is comfortable with and feels good about wearing but I gotta admit that I’m a little irritated that we are having to come back for so many adjustments.  Maybe this is normal but it didn’t seem like this was communicated to us before.  Perhaps I am a little more aggravated because there are only a handful of occularist in the country so we have to drive over an hour for every appointment.  I’m just glad we don’t end up waiting for hours in a waiting room like we do when we see the retina or cornea specialists. 

I must remember that these are minor things.  The shell still looks fantastic and I even had trouble remembering which eye to take out today.

The Motivation For Today (And Yesterday and Tomorrow)

As a result of a serious eye injury that my son suffered on New Year’s Day 2010, I have experienced a variety of phases and emotions over the past year. I was sad, angry, relieved, and felt guilty.

Why guilt, you ask? Why would I feel guilt when my son has become blind in his eye and now wears a prosthetic shell?

I termed my feelings as Survivor Guilt. I was so pleased with how my son’s life will turn out. He will do anything he wants, no restrictions. Do you know how many children we saw on New Year’s Day 2010 in the University of Michigan hospital that might not ever get to live a normal childhood let alone… leave the hospital? As crushed as I was about what happened to my son, I felt equally blessed that his situation was so MINOR.

I beat my feelings of sadness then I beat my feelings of anger at the bacteria Streptococcus pneumoniae. It was about mid-year when the survivor’s guilt really began to kick in. I thought I was feeling guilty that our lives had come out nearly unchanged.

In December, I wrote a post when I was feeling very overwhelmed with the world, my binges, and my survivor’s guilt. I was doing everything I could to pay back the present that my son… that I was given but it just didn’t seem to help me with the guilt. As good as it is to help others and give what I could it was not helping me to come to terms with my guilt. I spent the year eating for emotional comfort, eating to relieve my anger and as a crutch toward my guilt. It didn’t seem like I could go more than 5 days without binging on something. As positively as I started December, I found myself deep in depression by the middle of the month. It was as if it got worse the closer we came to the one year anniversary of the accident.

Just before Christmas, I struggled on a long run. It was hard to run and I just wasn’t feeling it. I took walking breaks as a compromise. As with most runs, my mind sifted back and forth through a variety of topics. The most popular topic was my survivor’s guilt and what could do to pay it back to the universe. I thought about how lucky we were that our son wasn’t one of those kids who were so sick they had to be kept inside of sterile rooms, even had sterile tents around their beds. We were lucky to have a child with a healthy body.

That was it. A healthy body. I was feeling guilty because I have a fully functional, capable and healthy body and yet I was not appreciating it the way that I should. I wasn’t exercising right, eating junk food, pouring in the sugar and over indulging on alcohol. Not only is my kid lucky, I’M lucky. I’m lucky to have a body that is strong, disease free, functional, and capable of doing more than I’ve imagined.

What I realized in that struggling run is that in order for me to pay it back to the universe I have to care for and appreciate the gift I was given, my own healthy body. I have no diseases and I’m damn lucky I don’t.

A New Eye: Steps 3 – Complete

Mik has been wearing his Scleral Shell for almost a month now. It looks amazing. You can read about the first steps here and how we got here. These posts are primarily for those who are in need of information on prosthetic eyes.

Now, a discussion on the Scleral Shell process.

Step 3. – Color Match
After Mik wore the clear Conformer for a few months, we went back to the Ocularist to begin building the custom shell. Our Ocularist , Bev, first matched the color of the white part, the sclera, then picked “button” that was similar in color to the iris of the good eye.

When I first met my husband, I was enamored with the color of his eyes. I thought his dark blue eyes looked like a stormy sky. I was pleased when both boys were born with the same color. Turns out, I don’t know anything about eye color because they are grey not blue. I guess I was still right about the stormy sky part.

Step 4. Open That Lid
Bev added some wax to the front of the clear Conformer to determine how much thicker the shell needed to be to open Mik’s eyelid enough to appear normal.

Step 5. Custom Paint Job
Custom paint jobs aren’t just for cars and motorcycles anymore, Mik has a custom painted eye. A week after selecting the starting colors, Bev channeled her artistic talents to create a master piece.

She held a white shell with a blue-grey center in her hand. I could tell from the shape that this was the opaque shell she had poured after our last meeting.

The first step was to apply super thin red fibers to represent the redness and veins in the corners of the eyes. Then she studied his iris under high light, low light and at angles. She measured his pupil and stuck a black spot in the center of the shell.

The custom paint job took about an hour then we were free to head home for the night. Meanwhile, Bev gave the shell a final clear coating to give it the glassy-eyed look.

Step 6 – Drive It Off The Lot
The next afternoon, we gave the Scleral shell a test drive then our final approval. It seemed like it took all of five minutes and five pictures before we were in the car taking the masterpiece home.

Completion – Mik wore the shell all through Thanksgiving. The reviews were five stars and two thumbs up. At first, people didn’t realize that something was different because it just looks like it should. My nephew came into the bathroom while I was putting it in Thanksgiving morning. (I am in charge of putting the shell in until Mik is confident enough to try it) When Mik showed my nephew what he looked like before and after, my nephew exclaimed, “YOU LOOK AMAZING!”

Most importantly, he looks like himself.

Before

After

After

** Bev may have to add a little more thickness to prop the eye lid up but no one notices it but me.

Not A Word In My Vocabulary

Blind. It is not a word I use to describe my son. I say, “He’s lost all vision in his left eye.” I have to say all because some people just don’t grasp that he is, well, blind in that eye. But, to me, he’s not blind. He sees just fine. He sees as well as you or I do…although, he did inherit the in-laws poor vision. Still, I don’t consider him blind.

The school has asked us to have his doctors fill out an ocular report because it may get him some additional resources for school. A friend who grew up with hearing impairment had recommended a similar thing to us, so, I was all for it. After procrastinating, forgetting then being reminded by Mr. F, I finally took the form to the retina doctor’s office to get it completed. I was hoping that I could just drop it off at the desk and return a few days later with BLI (blind) and PRO (prosthesis) written in the line for left eye.

Only, the form also requested the near distance and far distance vision of the right eye. It requires refractivity or some such medical term. So, the doctor’s assistant firmly stated that they don’t do that kind of thing there so they could not fill it out. I tried to protest. I asked if they could just fill out BLIND. It was to no avail because this lady was unmovable. I started to walk away then started to go back. Away. Back. Away.

From her point of view, and likely the agency that would be reading the report, the form needs to be filled out completely. For a moment though, I was stumped. Where do I go? What to I do? The doc that knows he’s blind doesn’t know his prescription but the doc for the prescription doesn’t know Mik is blind. The cornea specialist probably wouldn’t be able to fill it out either. The Ocularist isn’t even a doctor.

Sitting there in the car, it overcame me. Why does it all have to be so complicated? I just want someone to say he’s blind but I have to jump through hoops to get that. Everything on this journey has been about jumping through hoops. He’s blind, for goodness sake! He’s blind.

That’s when I stared crying. He’s blind.

So all this time I’ve been “really strong” about the injury and infection. I treated the loss as something insignificant and signed the kid up for gymnastics, told him to ride a bike, and jump into the pool. I call his prosthesis his “eye” and take it in and out everyday. Then a silly little form comes along that makes me cry like a toddler whose scraped their knee after falling on the concrete sidewalk. Perhaps, I haven’t really dealt with this loss after all.

When it is all said and done, I stick by my original statement. I don’t think of him as being blind. He sees just fine. You can call it that if you want but it’s not a word in my vocabulary.

A new eye -Step 1 and 2

Mik is well on his way to fooling everyone!

Step 1- take impression of the eye
The Ocularist took the impression a few weeks ago. It took three tries for Mik to be relaxed enough not to squeeze out all the goop. Basically, the Ocularist places a small plunger looking item under the eyelids. The handle is hollow so that a polymer can be injected down under the plunger end. Provided the patient doesn’t squint and squeeze out the polymer, it only takes one minute for the polymer to set. The Ocularist pulls out the impression then can make a topographical model of his eyeball.

Step 2- The Conformer
The Ocularist makes a clear acrylic Conformer to fit the model from the impression making it a custom fit. We learn how to put it in and take it out. Mik gradually increases the time he wears it, similar to getting accustomed to wearing contact lenses.

Mik was squeamish as the Ocularist put the conformer in but once it was in place, he exclaimed that he could not feel it at all. This made it much easier for me to learn and practice on him. It’s a little awkward because it is hard to accept that such a large piece goes under the eyelid. It took me about 10 tries to get it out and 4 tries to get it back in.

I was a little disappointed to see that it didn’t open his eye much. That was, afterall, a major part of why we were doing this. The Ocularist explained that the final version would be thicker and open the eye more. It is a gradual change they make as the wearer gets accustomed to the shell. I must admit that I was concerned on how much would be seen when he had the clear shell in. I can handle it but I’m not sure how the kids at school will feel.

In two weeks, we go get the hand painted matching shell. Mik can’t wait.

Picture 1. Mik without shell
Picture 2. Using the suction cup to remove the shell.

Hyelophobia

This broken glass scares the hell out of me. The eye injury didn’t happen to me but watching someone get injured in a freak accident tends to alter your reactions to things. I broke this flask in the lab.

Summer Rewind

Don’t you love New York in the fall? It makes me want to buy school supplies. I would send you a bouquet of newly sharpened pencils if I knew your name and address. -Joe Fox, You’ve Got Mail

It’s not quite fall but it is time for school supplies in our house. I have to agree with Joe, I have magical memories of the end of summer when it was time to prepare for school. The excitement of seeing friends again overcame the sadness of losing summer.

Now that I am older the seasons sort of blend together. If it weren’t for wretchedly hot, humid days, I would hardly know it had been summer. Perhaps that is why Amanda choose Summer Rewind as this month’s Dishing It theme. You don’t know what you’ve got till it’s gone but you need to recognize you had it in the first place!

First of all, my summer didn’t go much the way I had anticipated. That turns out to be tragic and not tragic at all. After my son fell and cut his eye in January, we were expecting a summer full of surgeries (cornea transplant and cataract), doctors visits and eye drops galore. That would also mean a whole summer of highly restricted activity for Mik. No running, no jumping, no swimming, no, no, and no.

After contracting orbital cellulitis and endophthalmitis (serious infections) in April, Mik pretty much lost all chance of having any vision in that eye. It was devastating at first but by early June he’d been given full activity clearance. He could even get his head wet. I seem to recall him saying, “This is the best summer ever!” Now, other than appearance, it’s like it never happened. My son is right back to being the kid he was meant to be. Those first six months this year were pretty boring for a nine year old boy, so, he made up for it! That is why our summer was not tragic…at all.

Still knows how to grow a chocolate mustache

Best Activity- Cub Scout Day Camp
The boys always love when I get involved and participate in their activities. I want them to have a much better scouting experience than I had as a kid which would only require having a leader just show up. So, I reserved some vacation days and volunteered to be a staff member at Day Camp. I ran the team sports area. I must say that it was a lot of fun for me too. I even took my own water gun. Plus, I got a chance to make a couple of non-athletic boys feel good about themselves and playing “sport” games.

Loaded and ready to go

Family Trips- The Upper Pennisula
Normally, we don’t take big vacations in the summer. We spend a lot of time at the Latvian campground in Michigan resulting in mini-trips nearly every weekend. This year, we figured we’d earned a big summer trip. We took the boys to Mackinac (Mackinaw) Island and the U.P. We ate fudge, ice cream and salt water taffy. We crossed the mighty Mackinac Bridge. We toured Grand Hotel, Fort Mackinac, The Shipwreck museum, and Tahquamenon falls. We played in mother nature’s water park in the waters of Lake Superior. And, last but not least, we visited an old, old friend. Then we made it back to the camp for the Fourth of July. I’d show you my pictures but there was an incident a week later involving my iPhone and my pool. I got the phone to work again but lost the pictures except the ones I had uploaded to facebook.

Most exciting thing- er, make it Most Exciting Race – Catfish Days 5k
Ok, it was my only race but it still feels good to know I finished in first place (for my age group). My first VFF race with a time of 25:45.

Activity you did the most? – Running and Pooling
It was a hot summer making the pool just the right temperature for all the most important times. My kids are spoiled rotten now because they think 87 deg F is a bit too refreshing! However, last night, the pool was 93 deg F. I had to get OUT of the pool to cool off! That is just wrong.

What’s left to do? What won’t get done? -Lots!
Six Flags Great America
Indiana Dunes
Water Park

Hmm… I guess there wasn’t that much anyway… Yes, we had a great summer and I am going to miss it.

Knee Deep

I’ve been ramping up my volunteer activism this year. Partly, it is because of my son’s eye injury. It just breaks my heart to think that other people are having to go through scarier or more life-threatening situations. Mik? He’s fine. Lately, I just feel compelled to be a little more active for the betterment of our community and our world.

The one non-profit that I’m up to my knees in is Cub Scouts. I’m there for my kids because I want them to have a great experience. So it feels motherish (Motherish is my word for selfish but pertaining to my kids) instead of generous.

I have to admit that when I start evaluating all my responsibilities in scouts, I feel more like I’m in neck deep. I started out as a den leader. Then I had to take on the fund-raising chair. But, that wasn’t enough. I decided to be day camp co-ordinator, as well as, a staff member of day camp. The committee executive has asked me to be the assistant pack leader. Maybe this does begin to qualify as a generous volunteer? Or maybe just a sucker?

This past weekend, I spent my time running back and forth between fund-raising activities, parades, and day camp preparations. All weekend I felt run down, cranky, and stressed. The weather was not favorable to working outdoors adding to the discomfort. Maybe the glow necklaces would have sold better if I hadn’t smelled so bad from working in the hot humidity all day. On the other hand, my boys are going to have a blast at camp so I also felt very satisfied.

I had a stroke of selfishness come Sunday morning. Just for me, because I felt I deserved it, I ran in the Catfish Days 5k race along with 100 other people. I’m always fond of my odds when there are only 100 other people. A surprising number of them were under 12 years old.

The weather record listed the temperature Sunday morning as 73 deg F with 70% humidity. I would have bet money that it was hotter and stickier. The sun was intense or maybe I just have a harder time with it in my older years. Thank goodness the course was mostly shaded. Still, I took three 10 count walking breaks and lost several overall position places as a result.

No worries though, I turned in a decent 25:45 time. A PR only because it was my first VFF race. I had debated about bare vs. VFF. I was disappointed during the run that I had chosen the VFFs until I got to the cemetery. Those roads were all limestone. I don’t do limestone.

My VFFs got noticed by a couple of other runners. One lady explained that she was running bone on bone. I suggested she investigate barefooting. She was a little skeptical until she remembered the Kenyans. I enjoyed spreading a little barefoot love. I also caught some attention when I walked up to take my medal for 1st place in my age category.

It turned out to be a pretty good day.

No Half For Me

I am trying to keep the big picture in focus because, today, I am sad that I will not be running the Borgess Half marathon tomorrow.  My son was in the hospital earlier this week and it just doesn’t seem like the right thing to do.  Before I would have said “doesn’t feel like the right thing to do” but now I can’t because my feelings want to go running.   Now, I need logic instead of heart. 

Still, it’s a little hard to think about how I said I was going to run the Borgess Half marathon.  I told everyone.  By not going, I feel a little like a poser.  Do those that saw my facebook status claiming I was going to run the half marathon now think I’m a… a…. a liar? I’m a 13.1 mile runner but I have no proof.

I’ve asked a friend to pick up the T-shirt I paid for.  But if I haven’t run the Borgess half, can I still wear it?  Will I let myself wear it?

Like with many things in life, there will be another half marathon on another day.  I need to quit thinking about it before I pack my bag and drive to Kalamazoo.