March Surgical Update

Welcome to the March edition of “What’s The Latest With the Eyes?” It’s been a whole month since our last official doctor’s update relayed to you by me, your mostly clueless reporter. This month we have positive signs to relate. Basically if you bought stock shares in my daughter’s eyes, I’d say don’t sell because we think things are going to continue to go up. Let’s turn to our on-site reporter in Detroit and find out what the latest news is from today’s surgery…

Typically in these surgical situations the doctor comes in beforehand to talk about what might happen during the procedure. In the case of my daughter’s eyes, there is a second visit mid-procedure in which the doctor comes out and tells us what he’s found and what he thinks the best course of action is.   He then goes back into the operating room, does what he thought would be good to do and then comes out and tells us how it went.   Sounds tragically repetitive but in the case of my daughter’s eyes it’s all I can do to hold on to the laptop and type as fast as I can while asking what I hope are good questions but are more than likely not.    Today’s procedure went about like that overall.

The first thing Dr. Trese told us when he came out mid-procedure was the pressure in both eyes was between eight and nine.   This is good news from several fronts.   First, the left eye which has had no surgical intervention went over four months at a pressure of zero or unmeasurable.   The prevailing thought was the ciliary bodies in her eyes were damaged and were not able to produce fluids any more.   Last month her left eye was at a one instead of zero, which we were thrilled about.   To have her left eye at an eight today is terrific news.   The remaining news about the left eye is it may be looking slightly better but as of now the retinal folds remain.

The right eye was also measuring between eight and nine.   That meant the pressure had dropped from last month where it had remained at a stable twelve for two months after being artificially increased to normal by the substances they added to her eye.    The drop isn’t particularly low and may mean other things are happening in the eye, so from a pressure standpoint, things are good all around.

He saw that the right eye’s lens capsule was a bit more opacified than it was last month.   As a clarification point, I thought that because Dr. Trese couldn’t see into her eye last month because of the opacification, she couldn’t see out.   He said that she could see out some, even with the capsule in its cloudy state.   He suggested opening up the lens capsule both in the front and in the back to allow for an unobscured view.

He said he saw a nice “orange reflex” in the right eye.   What is that?  I asked that too.   It’s when there’s a camera flash and you get an orange spot on the eye.   Guess what that is?  It’s the retina connected to the back of the eye.   YES!  Before he even was able to see in beyond the small area not opacified he was seeing good signs.   (As an aside, I will never, ever intentionally get rid of red eye again in a picture now that I have such a respect for the value of retinas.)

Dr. Trese said he planned on leaving the PFO in because “it’s not been that long.”   I didn’t get a full reason behind why on this one other than it wasn’t hurting anything and it could still do some good in the management of laying down and keeping the retina connected to the choroid layer.  He left, saying he’d be back in an hour with a final update.

In about an hour he was back with good news.   He said the retina was flat behind the right eye.   His exact words were, “the anatomy is thrilling.”   I don’t know if you can hear better words from your retina surgeon.

He opened up the lens capsule significantly on both sides.   If you can picture in your mind an M&M, I’ll describe what he did from there.   In December he made a small hole in the back top of the M&M and removed the entire chocolate center (lens) leaving the lens capsule in place (candy shell).   The candy shell (lens capsule) opacified since that time and today he removed the majority of the back half of the lens capsule and opened up a cats-eye shape in the front portion of the lens capsule.    So on the whole, there is not a lot of the M&M left in my daughter’s right eye, but it’s not needed to see clearly with the many options for vision correction we have today.   What she does need to see is a functioning retina, which we’re getting to next.

Once he removed the cloudy lens capsule he had a clear view of the retina.   It is significantly better from an anatomy standpoint, but does it function?   He saw some pigment under the retina in one spot and a little bit of whitish tissue.   He thought the blood flow looked a little less than normal.  He said the macular edema, or swelling around the central focal point, looked like it had settled down.   The one thing he said to keep in mind was we are still early in the whole process.   She’s less than three months since his initial surgery and there is a lot of time for change and improvement.

One thing that we still have to be mindful of is the positional restrictions she will have from the PFO remaining in her right eye.   There is a slightly higher chance of it moving to the anterior portion of her eye with her lens capsule having larger openings in it but that the silicon oil is a pretty decent barrier.  He also calmed my fears by saying there was nothing terrible that happened if it did move into the front of her eye.   There are long term concerns, but nothing in the short term.

He said whatever she’s been doing positionally had been working very well.   He said some people have a membrane form between the silicone oil and PFO and hers remained perfectly clear so keep up the good work.    At the end of the procedure they added more Healon into her eye to bring the pressure back to normal, put a patch over the eye and sent her off to recovery.

Tomorrow we go into his office and he takes off the patch.   I’m wondering what she’ll be able to see then?   I was disappointed they were unable to get a refraction on her right eye.   If her now flattened right retina can see, it can’t see well because the prescription she would have for that eye +10 to +20. Without a refraction we don’t have a good idea of a lens to get for her glasses.   They tried but with the multiple solutions they were working with during the surgery it wasn’t possible to get anything meaningful.

So good news, definitely.   We have a long way to go.  He left us with some cautious but positive thoughts.   He said both of her retinas are fairly damaged by the long-term detachment, but she may be able to recoup some via cell regrowth in the sub-retinal space.   He said she is young and sometimes regeneration can be pretty dramatic.   I love dramatic.

The Big Boy Update:  My son had a fever on Sunday so he stayed home from school today.  I think he may have had a good time with Mimi at home today because he told her earlier, “I’m not going to school tomorrow because I’m going to be very, very, very, very sick.”

The Tiny Girl Chronicles:  March surgery and her clouded lens capsule has been opened up, revealing a much flattened out retina.   Tomorrow the patch comes off and we’ll see if and what she can see.

Twelve Hours

I would not have believed I could be busy with work for twelve hours in a car going to Detroit, but so it is.   I feel like we left not that long ago and yet I’m just scrambling to finish up things as we’re about to pull into the hotel parking lot.  

This time, I am not going to put an open water bottle into my laptop bag so I can carry a sleeping child into the building.

This time, my child is awake and she’s excited about seeing her friend Susan, who works at the front desk at night.   She brought back the stuffed dog with the heart in his paws she was given by Susan last time we visited.

Hopefully we’ll get in in time to swim in the pool before we have to go to bed.    We’re all looking forward to getting to the hotel.

The Big Boy Update:  My son had a low-grade fever today.   We told him he couldn’t play with his friends today.  My mother is watching him while we’re driving to Detroit and when his friend, Keira knocked on the door he told her he couldn't play.   Then he told my mother, “Mimi, this is how it’s going to be.  This afternoon I’m going to be better so I can play with Keira but tomorrow I’m going to be sick so I don’t have to go to school.”

The Tiny Girl Chronicles:   My daughter is such a good car traveller.   She gets bored but she went twelve hours today without complaining.   Although one time she asked if we were there yet four times in a row, pausing about three seconds between queries.

Fitness Non-Update:  Okay, oww.   I was overly optimistic on how great I felt after the race yesterday.   This morning I was sore.   Today I’ve been in a car for twelve hours and I am hardly moving and I am sore still.

It Was Great…And Tiring

We ran the park marathon today.   It was very well run, the weather was about the best you could ask for on the fifth of March and the trail conditions couldn’t be better.   In short, it was the perfect day for a March marathon.

We did well, although we’re not the fastest runners.   I did my expected three falls during the single track miles, resulting in a small scrape on one knee and bruised balls of my thumbs from catching me as I fell.   Other than that, the race was without injury.

The hydration stations were well-stocked with all sorts of things to eat and drink.   I discovered I like Fritos during a race.   I would never have expected it, but they are so incredibly delicious when you’re dehydrated and in need of sustenance during a run.

We ran into my neighbors children at one point and the jogged along with us for close to a mile.   Then they decided they didn’t want to go any further and furthermore, they were too scared to run back to their father who was waiting with the youngest child.   So we ran backwards with them and added close to a mile to our race distance, making our total run well over twenty-seven miles.

Uncle Jonathan met us two miles before the end of the race—how sweet!   We were so happy to see him.   He had run a 10K that morning and then came out to run us in to the finish line.    It was great to see him and catch up.

We got in sight of the finish line and sprinted over it in a last-ditch effort to regain some time and compete against the each other—fun times.

I’m up for running the marathon in the park across the street again next year after today.

The Big Boy Update:  My son sang out the “Nationwide is on your side” jingle the other day.   We don’t typically play through commercials, but apparently he caught it enough that it stuck.    I still don’t know where he heard it though.

The Tiny Girl Chronicles:  My daughter knows her eye will be operated on on Monday.   She knows her surgeon will likely take the heavy substance out of her eye and her restrictions on position will be removed.   She asked me the other day, “but mom, can I keep my stand?”   She likes her iPad stand that lets her lie on her back and watch the iPad.   I told her she could still keep it.

Fitness Update:  27.8 miles today in the park for the marathon organized by the track club I joined that got me trained up enough to run my first 5K.   Great day.  Great race.

I’m a Gross

Tomorrow my friend and I are running a marathon.   I think this is the sixth marathon race we’ve run, but it will be the most difficult one we’ve done yet.   The course itself is what makes the race challenging.  We’re trained up for it and have even run the marathon distance, going through most of the sections of the race path we’ll be following tomorrow.

The reason this particular marathon will be more challenging is the terrain.   There is a lot of elevation change.   That doesn’t particularly bother us because it’s our “home course” in so far as it’s in the park across the street from our neighborhood where we run all the time.   There are sections of the race we’ve run for years, and we shouldn’t have too much trouble with them.    There are other sections that we don’t know as well.

The most difficult part, okay wait, there are several difficult parts, so let me say the most “challenging” will be the over six miles of single track trail.   These are little one-person wide trails through the woods where sometimes you have to look for the next blue triangle nailed to a tree ahead to figure out where to go next.

That part will be done with early on in the race.   We have the fun of running what I named, “the hateful route” not once, but twice, with its switch backs and extreme elevation changes after the first half of the race is completed.

Then, right before the end, we go from one of the highest points in the race elevation-wise downhill to a creek.   When we get to that low point, we run all the way back up the path to the top and are at probably close to mile twenty-four.    From that point on, there is only one more real obstacle, something I named “the vista” years ago.     It’s a mean little hill that for some reason is psychologically more challenging than other inclines of similar distance and pitch.   I think it’s because it’s a straight path and there are no corners to visually block how far you’re going to be running uphill and your brain just starts telling you, “no way, I can’t do that hill.”

After the vista, we’re nearly flat until the finish line.   I’m looking forward to tomorrow tinged with a bit of anxiety.   I just hope I don’t fall down and concuss myself on one of the big roots or rocks.   That would be embarrassing.

Oh, and about that blog post title…my bib number is 144.

The Big Boy Update:  Lately my son describes things two ways:  “that’s so epic” and “that’s so boredom”.   Today he was looking at Legos in the toy store and I said, “hey, look at this bake shop Lego set”   That particular set and the ones in that area were all in pink and clearly targeted at girls.   But hey, I wanted my little guy to have an opportunity to consider something other than the knights and warriors types of sets he is always drawn to.   He looked at me and said, “that is boredom.  I don’t like girly stuff.”

The Tiny Girl Chronicles:  My daughter and son had an altercation that involved bodily contact on the stairs just before dinner.   My son stormed away mad and my daughter remained on the stairs crying.   I talked to both of them.   I suggested they come to their seats because their dinner was ready.   I suggested to my daughter that she needed to try and stop crying.   As she came down the stairs she said, “I hope dinner helps me calm down.”  (It did.)

The Visual Calendar

My children have been asking a lot recently what day of the week it is, is it a school day, how many school days are left in the week and if tomorrow is a weekend day.   We can tell them what day it is, and they know the days, but their mental map of a week isn’t that concrete yet.    So I decided to make a calendar.

I was going to do something fancy with velcro stars, find a laminator and basically over engineer something that was at it’s basic informational level, simple.    I forgot and realized the next day at breakfast and decided on a low-tech option instead, necessitated by lack of time.

I got a piece of paper and drew a long rectangle and then marked off seven blocks inside the rectangle.   I got a highlighter and colored in the last two blocks at the end of the seven, indicating Saturday and Sunday.     Then I brought the rudimentary calendar over to the children.   I told them this was a week with white days being school days and green days being weekend days.

Then I took my marker and wrote “M” in the Monday block, telling them that was two days ago.   I wrote “T” in the second block for Tuesday and said that was yesterday.   I wrote a “W” in the third block and said that was today, Wednesday.   Then I asked if they could tell me how many more school days we had until the weekend?

They both cried out, “two more days!”   Today I wrote in “Th” for Thursday and pointed out that tomorrow was the last day of the school week before the weekend.   We taped the calendar at the bottom of the refrigerator, just at their eye-level.  

They like the new calendar.   Next week we’ll draw another rectangle below the one for this week and start all over again.

The Big Boy Update:  My daughter told us her favorite number was ten-thousand a while back.   My son didn’t weigh-in on his favorite number until recently where he volunteered for no apparent reason  that zero was his favorite number.

The Tiny Girl Chronicles:  My daughter may be seeing somewhat more information from her left eye.   She’s discovered if she rolls the eye upwards she can tell more from that angle.   On the way to Tae Kwon Do tonight she told me correctly car after car’s colors.   She got the bright colors easily.   Grey, silver and dark grey in the low light were hard to tell, but she nailed the other ones.   She even told me about “a big white truck, mom!”   I told her it was a lot like a truck but it carried people, what did she think it was?   She easily guessed it was a bus.   Then she told me the bus had two other colors on it and said they were red and yellow.   The city bus is white with a long tri-colored stripe of red, orange and yellow below the windows.   I was surprised she could see the colors.    Then we got on a divided highway and she asked about the other cars far away.    She could see the movement of cars across the large, grass median (I think).   Hopefully this is good news for her left eye.   Her right isn’t seeing much with the opacified lens capsule and lack of natural lens, so it has to be left only that this information is coming from.

1-2-3 Quiet Game

We were having volume problems in the car some time back with the children so we decided to play the quiet game.  They didn’t get the rules at first but they picked up after a few times.   Mostly they thought the whole thing was funny, even though no one was remaining quiet for very long.

The next evolution in the game was my daughter’s insistence that we play, “123quietgame” so named because of how quickly she would run together the words.    She would start a game and then twelve seconds later, before anyone had even made a noise, end the game by starting the game again.    We had a few conversations about how a game usually went, suggesting we wait until someone makes a noise before starting the game again.

For some time now if anyone needs a reduction of volume in the car they can say, “1-2-3 Quiet Game” as a request for us all to tone it down.   Usually it’s my daughter making the request, although my son likes to kick off a game from time to time.

Tonight I saw the next evolution in the game.   My children had picked up on something my husband and I were doing which was pointing at the person who spoke/laughed/made a noise to let them know they were out of the game.   By doing this you’re still in the game yourself.   Tonight my daughter started a game as we all went to dinner with my mother.   When someone talked both my son and daughter immediately pointed at them.  

For the first time, we got through a game or two where we had a true “winner”, meaning everyone was out except one person.   More commonly one person would say something and then the game would start over or fizzle out.

We had a lot of fun trying to get my son to crack tonight.   He finally lost one time to my husband who turned around at a stop light and made my son laugh just by looking at him.    It was a fun ride to dinner.

The Big Boy Tiny Girl Train Interaction:   On the way to dinner we were passing near train tracks. The adults heard the train’s horn and told the children to listen.   Unfortunately, the train had moved on and after a bit we started talking again.   My son wasn’t ready to give up on hearing the train and said very emphatically, “wait, everybody be quiet.  I think I hear the train.”   My daughter replied, “well, I think that was my nose.”

Playing Wedding

My neighbor called me today while I was in the car with my husband and children to tell me a story.   I couldn’t stop laughing through the whole thing, even though it’s not strictly a funny story.    She said she wanted to call and let me know what had happened.

She’s come upstairs to find my son (five-years-old) and her daughter (four-years-old) completely naked, in their daughter’s bed, under the covers.   When asked what was going on they informed her they were, “playing wedding”.  

She explained to them that wasn’t perhaps the best game for them to be playing and it was time to get their clothes back ok and move along to other games and things they could play.    I was laughing while she’s telling me this because I’m trying to figure out which one of the children came up with this idea—and more to the point, where did they get the idea from in the first place?

I have seen it happen enough to know by now that children are little sponges and can pick up things from all sorts of times when you didn’t even know they were paying attention.   But even so, when did they get the idea that you have a wedding and then go get into bed together naked?

I even offered up to her with the “possible too much information” caveat that my husband and I didn’t sleep naked so that wasn’t an easy leap.    She and I didn’t come to any conclusions on where it came from in the end.    I was definitely able to use the, “kids grow up so fast these days” phrase today in a whole new light though.

The Big Boy Update:  My son has a game he likes to play on the iPad when he gets to have time with it on the weekends.   There’s this whole notion of “leveling up” that happens when you play the game and then are rewarded with more powerful items or new levels by virtue of the time you’ve invested in playing.   My son just likes to watch the thirty-second videos that highlight aspects of the game, and the products the Lego company has for sale that go with the product.   If there was a way to level up by watching in-game videos, my son would be maxed out.

The Tiny Girl Chronicles:   On the way home from dinner tonight my husband and I saw an ambulance coming our way.   We said to the children, “listen!”  My son immediately said he heard the ambulance.   My daughter rolled down her window, listened carefully for a few seconds and then said rather definitively, “aliens.”

Fitness Update:  My cousin and I ran close to four miles today.   Well, we did some interval walking in the middle, but there was one point we had to clamber over a large, fallen tree and another time I had to lie down in the greenway to get a measurement so there were additional “obstacles” we added into the run.