Thursday, March 9, 2017

Jesse visits Dr. Granet for a checkup

In mid-January we made another trip down to San Diego to see Dr. Granet.  This was our 2nd visit with Dr. Granet and we were hopeful that we would be in a position where we were comfortable making a call on surgery.

Unfortunately that didn't really happen.

In October 2016 we started noticing Jesse develop a second null point.  Instead of chin down in a single plane, he's now doing a combination yaw/pitch/roll where his chin tilts to the right and the corner of his left eye tilts toward the floor.  He doesn't use it often, but if he really wants to see something, that is the point of his best vision.  (It's interesting to note this is usually when he's trying to pick the pasta or black beans off his plate while avoiding some other food that he doesn't like)

Given that it was only about 2 months since Jesse had developed this new null point, we all decided it would be a good idea to hold off a few more months to see what happens.  It's much easier to perform surgery on known null point(s) and allow the children to figure out their best vision before correcting to it.  Jesse isn't even 2 years old yet, and in the grand scheme of things 4 more months won't really make much of a difference.

Of course, over the last 6 weeks, we've really been noticing his two null points, as described above, so in a way I'm glad we waited.  I feel much more confident now knowing what we would like to do and I feel ready.  I'm eager for Jesse to have the surgery and I just really hope and pray that it improves his vision, especially for distance where he seems to have the most trouble.

Also on our trip I learned an interesting fact about the surgical differences between Dr. Granet's and Dr. Hertle's procedures.  Ever since July 2016 it had bothered me that Dr. Hertle would admit to a 10% or more probability that an adverse event of his surgery would be strabismus (lazy eye), yet Dr. Granet claimed to only have had this ever happen to one or two patients.  As it turns out, Dr. Granet will not touch the side muscles during the first surgery.  He would rather wait to see if the null point isn't fully corrected, then go in and do a slight correction surgery.  Where Dr. Hertle wants to tackle all muscles at once to attempt to give the best outcome on the first surgery.  Knowing this, I'm even more happy with our decision to wait for Dr. Granet and to trust him to perform the surgery on little Jesse.

Jesse did great with the doctors and even sat 
in "his chair" all by himself for the whole exam!

Also, as a side note, Jesse totally rocks the game Perfection.  So we know his close up vision is good!

To follow our story from the beginning, click HERE.
To check out the previous post, click HERE.

Saturday, February 18, 2017

Costa Rica 2017 - A 5 Year Anniversary Trip

For 7 years I've been waiting to get back to Costa Rica. The weather, the people, the food, the atmosphere, it's what makes Costa Rica such a great place to visit, and I imagine, a great place to live.

After a year of dropping hints and discussion with my parents, I eventually convinced them to come watch the boys while Jeremy and I took a much needed anniversary vacation, just the two of us. 5 years!

After much planning and discussion we settled on a revisit to Monteverde then a tour around the Guanacaste Provence, which was all new for us. 

As it turns out, flying from LA to Costa Rica takes a lot longer than flying from Houston. After boarding a 11am flight, we finally made it to Liberia at 9:40pm. Being a very small airport, there aren't many options for getting a car this late at night. So we did what almost everyone else on our flight did, we stayed the night at the Hilton Garden Inn (free shuttle) then got our car in the morning. The hotel was nice enough for a night and has a restaurant that is open until 11pm for all the late day travelers.

Saturday morning we took the Alamo shuttle from the hotel to rent our car. We rented a 4 wheel drive to make sure we could get around all the roads, specifically around Monteverde and Tenorio. Something to remember about renting a car in Costa Rica; you must purchase 3rd party liability insurance. This is not the same as the car insurance that your credit card covers, nor is it personal medical insurance. This is the minimum required insurance in Costa Rica, much like in the states. And while the cost of the car may he reasonable, $99/wk, the insurance cost is not. It came in at a whopping $350 for the week we were there. I was really disappointed that this was not mentioned when we reserved the car online And it wasn't included in the price during reservation time. Alamo fail.


The drive from The airport to Monteverde reminded us how beautiful Costa Rica is. It also reminded us about driving in Costa Rica, the good and the bad.  I actually really like driving in the country.  It's simple, not too many cars, the signs and road indicators are more guidelines than rules, and everyone just generally gets along.  The system works.

About 1/2 the way to Monteverde is paved but after turning off 1 to 145 the road quickly turns to dirt then rough gravel. It's slow going and having a 4 wheel drive is very nice in some areas. I could easily see how it would be required during the rainy season.  At some point we stopped following the GPS and followed the signs posted along the road.  That served us just fine.

We pulled into the Monteverde Lodge and Gardens around noon then headed out to see if our favorite fig tree was still standing. Not only is it still there, but it's also become quite popular. Apparently the secret fig tree isn't so secret anymore as it's now listed on hostel maps around the area. Oh well, it was still fun to find it again and to climb to the top. 

The next day was Sunday. We headed up to Selvatura for the canopy tour and hanging bridges hike. We knew this company since we had used them 7 years ago. They have 18 zip lines and some of them are really long. The staff is nice and we had a great time. They also have a Tarzan swing which is scary but fun. 

After zip lining we stopped by Don Juan for some coffee. When we entered the woman asked us about doing a tour. We debated on a tour, but since we'd done it on our last trip we decided to just have some coffee on the terrace and relax for a bit. As we were sipping our coffee the woman approached us and said that if we did want to tour it would be free since we visited them 7 years ago and came back. We were taken back by this generosity, but mentioned we didn't have time for the whole tour which would have lasted from 3-4:30. We mentioned it would have been nice to do the chocolate tour, since it wasn't part of the tour last time we visited, but maybe next time. As it turns out the tour that was going on was just about finished with the coffee portion and was about to do sugarcane and chocolate! She invited us to join them and we happily accepted. 

I'm really glad the way everything worked out. The sugarcane was fun to see again and our tour guide, Alex, was really good. This time we pressed the cane (3 times for optimal juicing, and then Alex added lime to the sugar juice. This was not done last time and I can tell you the line made it taste much better. It was actually pretty good. 

The chocolate part of the tour was next and it was really cool. We tasted all the stages of chocolate from the pods, you can suck on them, to the final product. After the coco pods ferment in a jar for a week they are then left to dry for 1 month. After drying they are roasted for 5-8 minutes and chopped up to make coco nibs. After grinding the nibs he added vanilla, then powdered sugar cane, and finally hot water. A bit of whisking and bam, best hot chocolate I've ever had. We brought some coco nibs and sugar cane powder home so I could try to replicate it myself.

As we were leaving the tour we actually met Don Juan who was walking around the property. A short little old gentleman, we went to say hi and were instantly treated with hugs. On our drive out we also had the rare chance to see a sloth in a tree! 

While in town we ate dinner at two restaurants: De Lucia and Restaurant de Thomas. Both were amazing. The first we had visited back in 2009. I had written "amazing" in my guide book and after 7 years it still was. An unique restaurant, we had a delicious sea bass and the best steak we'd had in years. So tender and juicy, and wrapped in bacon, because why not. The second restaurant we happened upon our second night. Tucked away in a small shopping area, and very unassuming, we walked in to find 5 small tables and a tiny kitchen. Unsure if we would stay, other patrons looked our way and told us it was the second time they'd eaten there in three days. Sold. The meal was so delicious. I had the seafood pasta with homemade pasta and shrimp in a white wine cream and tomato sauce. Jeremy had the tuna steak with wasabi ginger sauce. Both were out of this world delicious.  We also had desserts at the Tree House restaurant in downtown.  


Leaving Monteverde we left at 6am and took 606 to 605 which is still a dirt road but much smoother. Incant even begin to describe the beauty of the landscape. After hitting 1, we headed north to Adventure Tours for some white water rafting. Our final destination for the day was Tenorio and this was right on the way. In fact we were about to raft the Tenorio river. The company, Adventure Tours had some great reviews so we went with them and were not disappointed. The staff was really nice, our guide, Samuel was good, the rafting fun, and the lunch afterward was one of the best plate lunches we had on the trip. I think the rapids were better on our last rafting trip which we did in Manuel Antonio, but I also think that was because it was June which is the start of the rainy season. This trip was about 1/3 float and 2/3 rapids of some type. During the float we had fun messing with the other boats and swimming. The water this time was perfectly clear, and we did get to do a 10 foot drop at the end! (Class IV)

A short drive up 6 lead us to the Tenorio Lodge. After checking into our room, which was huge with large floor to ceiling windows and stunning views, we had time for a quick jacuzzi soak before dinner at the lodge. There are a handful of lodges around Tenorio and while the room was nice, the food was really subpar and the bed and pillows uncomfortable. 

Tuesday we got up early and headed to Tenorio National Park. Hiking the Rio Celeste was one of the activities I was looking forward to most on this trip. The Rio Celeste is an unreal natural torquise river that is formed by the confluence of two smaller rivers. When these two rivers mix the Ph balance in the water changes due to the mineral and metal deposits of each. Larger minerals fall to the bottom forming the white band you see and lighter minerals float to the surface. When the sun strikes the water the minerals refract the light and your eye sees the beautiful blue. Down river of the confluence is a large pool, the blue lagoon, and a stunning waterfall. I'm so glad it wasn't raining, as the rain turns the water muddy and the effect goes away, though I'm told it comes back 10-15 minutes after the rain stops. This was the only hike we did this trip but it was super fun... and muddy. Sorry the pictures don't do it justice, for some reason blogger color "corrects" on upload.  Follow the link at the bottom to see them on flickr.

Back in the town of Bijagua we ate lunch at Soda Los Mangos (see posts from 2009 to understand why we HAD to eat here) and I somehow managed to pull off enough Spanish to purchase a mango and huge avocado from a fruit cart on the side of the road. Dos Mil Cien. 


Being without kids it was easy for us to hotel hop, so that night we left Tenorio and headed north to the Rincon De La Vieja area. This is just north of Tenorio but of course you can't drive as the crow flies. It was about 1 hour between the destinations. In the park we stayed at Hacienda Guachipelin. Our original idea was to do a full day adventure tour here on Wednesday but we got in early Tuesday night, and because we were guests of the hotel, we were able to use the hot springs that night as part of our stay.

Unlike Tabacon in La Fortuna, these springs aren't lit up and glamorized, nor are they adult only, as we found out in the last thirty minutes when we were treated by 10 rambunctious 8-9 year olds. Nonetheless we had fun. There are about 8-9 pools for relaxing, all of different temperatures. There is also a man handing out paint brushes and pots of mud. Of course we had to partake. Nothing says Happy Valentines like painting your spouse with mud. After letting it dry for 10 minutes it's time for a rinse in the (cold) shower or (colder) river and then into one of the pools. We spent about an hour there and afterward our skin felt really smooth! 

There is a lot to do on the property. You can hike into the National Park (bring your passport in with you), or hike to any of 3 waterfalls. You can also do one of several adventure activities or combine several of them for an adventure day pass. Since we had already done the hot springs and had gone rafting a few days before and zip lining earlier in the trip, we didn't feel the need to repeat those. We debated on just hiking around then heading out but something told me we'd really enjoy the tubing down the river, so we signed up. 

We opted for the 8:30 am horseback ride to the river entrance. From there we each got our own tubes and were put in immediately into some awesome rapids. It was a 5km river and it went by so quick. Easily 90% rapids and they were sooooo much fun! We laughed the whole time and somehow neither of us flipped out. You could have put me on a bus back to the start and I would have done it all day long. 


From the Hacienda we headed west to the beach. Playa Hermosa, Playa Flamingo, Playa Conchal, and Playa Tamarindo were all on my list. If we had one more day we would have done some beach hopping, but alas our vacation was coming to a close and we only had one more day. We opted to get into Tamarindo earlier and check out the town and the hotel. Along the way we commented how nice it was driving in Costa Rica and how easy it was. No real rules, more like guidelines, and everyone just makes it work. And just then "IGUANA!!!!" Slam the breaks! 

Once in Tamarindo we stayed at Hotel Argo Iris. A cute little boutique hotel just off the stop enough to be quiet at night, but close enough to easily walk to the beach and into town. They also had some resident iguanas. The room was small but nice and had A/C. My only complaint was the huge gap in the door which meant bugs (and a cockroach) could get in. Also the restaurant, Seasons, had live music until about 9:30 on Thursday night and our worn out selves were ready to crash at 8:30. The music wouldn't have bothered us but it was fairly awful. 

That night we walked the town, had fresh brews at Volcano Brewing, and Jeremy graciously stopped in like every store with me while I found a few dresses to take home. My intention was to get some colorful beach dresses, but of course I came home with two new black ones. I really tried to branch out!

We ate dinner that night, and lunch the following day, at beach restaurants right on the sand. You pay for the novelty but it was still nice and the food wasn't bad; in fact my mahi magi was pretty good the first night. Two things about Tamarindo: 1, it's totally an American tourist destination. Everything, or nearly everything, is in dollars. 2, it's slooooow. As in the service is so slow. But hey, your on the beach, pura vida. 

Our last day we opted for surf lessons over a catamaran sunset sail. Best decision. We took lessons from Iguana Surf (I-wanna surf). A group lesson is 4 people/instructor (we had 3) and was $45/pp including board, lesson, locker rental, and rash guard shirt. Turns out I wish I had rash guard shorts (do they make those?), or at least board shorts. My thighs have such bad board rash on them. Perhaps I was doing something wrong on the get up.

We had a blast surfing. Both Jeremy and I got up almost right away and our instructor was very helpful. We had a 2 hour lesson the rented the boards for another 2 hours. By the end we were exhausted and the waves were getting a bit too strong for us beginners. 
After lunch and we headed to the hotel pool for a dip in some fresh water. There we chatted up some other guests for a while before showering and heading back to town for sunset. After all, what better way to end the vacation than with drinks in hand and sunset on the beach! 

Dinner our last night was at the Green Papaya. A taco bar near our hotel. I am so glad they were open for dinner and not just lunch. In fact I'm feeling full just writing this. First, the atmosphere is great. Beautiful tiki ambience with wood tables and outside bar tables with wooden rope swings for seating. First came chips and dip. Best homemade tortilla chips ever. Next was the tacos. Oh My Goodness. Nothing, and I mean nothing, I have ever had in my life compares to these tacos. In fact I don't know if I can ever visit Torchies again. These things were huge and out of this world delicious. Each plate came with two tacos so we split them, Mahi Mahi on one order and Seared Ahi Tuna for the other. Each taco came with two huge chunks of fish, seriously fist size, on top of red cabbage and some aioli or sauce. The mahi was so fresh, delicate, and tasty. The tuna was rubbed in a ginger sesame wasabi that was packed with flavor. I'm salivating as I type. If you are in Tamarindo you must go here.

After feeling incredibly full, and realizing coffee shops aren't open at night here, we retired to our room and rested. Vacation would be over soon.

Friday morning we headed out back to Liberia. We opted to prepay for gas for the rental car because I thought our flight was at 7am which meant driving at 3am but it turns out it wasn't till 9:30 and we could have easily got our own gas. Also, a point of note, the $29 exit visa cost is now included in the airline fee, so no worry about having to get that at the airport.

As I sit here on the plane I reflect on the amazing trip we had. Thank you so much to my parents for watching the boys for a week. We miss them and can't wait to get home, but we also were so happy to have this time to ourselves. 

Costa Rica, we will be back. 

Pura Vida!

Check out pictures and videos here:

Sunday, January 22, 2017

Barcelo Maya - Maya Riviera, Mexico

I'm in the middle of researching our next spring break trip to Mexico and I thought it would be useful to detail out my findings about the Barcelo Maya complex, mostly so I remember, but you may find it useful too.

The Barcelo Maya complex is located in Puerto Aventuras about an hour south of Cancun.

From here you can see there are 5 hotels divided into 3 main areas. 

Maya Palace

kids pool visible in the center

kids pool

kids pool arial view

different view, kids pool is barely visible but can be seen up to the right of the main pool.

Far left is the Barcelo Maya Palace (K, J).  The Palace is "stay at 1 play at 5," so if you want to take advantage of anything in the maya Palace you must stay here.  This is their "deluxe" resort.   I've read that perhaps you can pay extra to visit here if you're staying at the other hotels, but this isn't confirmed. From the looks of things they have a pretty cool kids pool right out front.  Age 12 and under and strictly enforced.  I've read parents can assist their kids at the bottom of the slides, but that's it.  Also water is very shallow, which seems great for little kids.

Maya Colonial & Tropical

kids pool

kids pool arial view

main pool, beach out front, kids pool lower left, bar upper right

another view

dry playground

beach, pool area, kids pool can be seen just barely on the right.

I'm fairly sure the two rows of red/orange buildings are the Maya Tropical.

In the middle you have the "moderate" resorts which are the Maya Tropical (G, F) and Maya Colonial (I, H).  For all purposes these are the same hotel and share the pool/beach area out front.  These are "stay at 1, play at 4" hotels, meaning that you can play and eat at either the Maya Tropical, Colonial, Beach, or Caribe.  I found a website,, which is really helpful.  They state that "Barcelo Maya Colonial is about dark woods, luxurious and colonial style finishes while the Barcelo Maya Tropical is airy, breezy and tropical feeling."  The beach is wide and the kids pool is right out front and looks fun for little ones.  Same rules listed above apply: kids under 12 only.  There is also a dry playground in this area.

Notice how all the rooms are situated perpendicular to the beach.  I think the only way to get a beach/ocean view is to get a front facing room which I'm sure come at a premium cost.

Maya Caribe & Beach

swim up bar seen to the far right


splash pad

kids pool area

Finally you have the Maya Caribe (D, E) and Maya Beach (A, B, C).  These are their "entry" level resorts.  I know from friends that the Caribe has rooms with separate bedroom/living areas and they also have swim up rooms out front.  Similar to the Tropical/Colonial these resorts are "stay at 1, play at 4" and you can access all the pools/amenities and food freely between the Beach, Caribe,Tropical, and Colonial.  I can't really find much detail about the kids pool area for the Caribe/Beach so I'm not sure how extensive it is.  I did find picture of a splash pad as seen above.


The kids club at all the resorts is called the Barcy Club and is 4-12 years but under 4 can participate with adult supervision.  there seems to be some type of kids club at all the resorts, but it's fairly clear that it's biggest at the Palace and the Tropical/Colonial.

We also read about the water park called Pirate Island.  This is a small park with slides and 'surfing' geared toward kids 6 and over.  Cost is $20/pp (including adults) and is not included in the all-inclusive package.  Kids under 6 may be free, but that's not confirmed.  Also this seems to be situated near the Maya Tropical.

Located in the Maya Beach/Caribe area is the Dolphinaris where you can interact with dolphins.  This is extra and at the moment I have few details, but know that it's an option and VERY expensive (from what I've read).

Other activities: bowling ($), spa ($), mall/shopping ($).

All resorts have formal and al a carte dining, and like all resorts, you'd do yourself a favor by booking a table in advance (week or so seems fine) for the formal seating otherwise you're likely not to get a reservation.

I've also read that the snorkeling around here is very good and seems to be popular just off the pier which is down near the Maya Beach.  

The beach is also very expansive and friends who visited in October said the water was very calm and approachable, but I'm not sure if that's because of the time of year or because the beach/water is well protected.  (In contrast we visited a resort closer to Cancun in April 2016 and there was a red flag warning every day.  Again, maybe because of the time of year, beach location, or just bad luck). 

In contrast with resorts closer to Cancun, the Barcelo Maya properties are located close to Tulum and I think that would make for a really fun day trip.

Overall the whole complex looks beautiful and the beach looks amazing.  Much bigger than the Iberostar Cancun, so while we didn't need a stroller there, for little ones at this resort I've heard it's a must.  I know that we will visit here sometime, be it in 2017 or 2018, and I think we will opt to stay at the Maya Tropical or Maya Palace. 

Friday, September 9, 2016

A trip to see Dr. Granet

A lot has happened since July when we first met Dr. Hertle.

Surgery Date

We decided shortly after the trip that we definitely wanted to get surgery for Jesse sooner than later and so we called his office and we were added to the surgery wait list.  A few short weeks later and we got the call, October 6th would be our surgery date.

Wow.  This just got real.

However, it wasn't all smiles and excitement.  In fact, it was very little excitement and a lot more nervousness.  Like more nervousness than one would expect.  I mostly expected that I would be like 70% nervous and 30% excited for Jesse's future.  Instead both Jeremy and I found ourselves uneasy about the prospect of surgery with Dr. Hertle at this point.

So we decided to sleep on it a while and allow ourselves a few weeks to consider.

At this point we had done lots and lots of research, read numerous forums and hundreds of posts from fellow parents on Facebook.  So many differing opinions and so many unique children with their own unique story.  Some who love one doctor and passionately hate another, some who are indifferent, some children who've had success after one surgery, other's who've needed two, and yet others who've needed 4 and still haven't found the results they are looking for.

A few days after being scheduled for surgery, I called down to Dr. Granet's office in San Diego and requested a visit for early September.   As I've said before, we are very fortunate that we have the opportunity and resources to visit so many of the top nystagmus doctors in the country, and in the world.

I also had the opportunity to join a Facebook group for a third doctor, Dr. Lingua.  This group is a private group and solely designed as a support group for parents and kids who've had or are having surgery with Dr. Lingua.  I am so thankful to the moderator, who has not only allowed me to join their group and follow along, seeing results first hand, but who has become a close friend in this community of parents.  She's answered so many of my questions and is so supportive.

So here we were again, three doctors, two very different surgeries.  What to do.

For about a month we watched Jesse and largely put the decision of surgery our of our minds.  We knew we were going to see Dr. Granet and we hoped it would help us in making this critical decision.

Dr. Granet

Soon it came time for our trip to San Diego.  My amazing friend, Candace, agreed to come watch Max so that Jeremy and I could both be there with Jesse at the doctors office and because it's only about an hour flight away, we made it into a day trip.  Out at 4am, home by 9pm.  A thousand thank you's to Candace for her help, it was so nice to give Jesse this one-on-one time to be able to make these critical decisions.

We spent about 4 hours at Dr. Granet's office.  We knew from others that the appointment may not be on time and would take a while, so we were prepared. 

First we met with Dr. Pansara, a fellow of Dr. Granet's.  She was super nice and so good with Jesse.  She took her time but was also very quick.  I really liked that they had a lot of handheld tools to make it easier on the little ones.  She did numerous tests like previous doctors, but she also did an eye pressure test with a handheld unit.  Pretty cool.

Just as we'd figured, she agreed with previous doctors that jesse's eyes look pretty good.  His refractive error is normal for his age and his retina looks good.  He did have a light fundus but that was about it.

After some drops and a few more checks, we met with Dr. Granet.  Now I will say during this trip we did far less testing than we did with Dr. Hertle.  We didn't do a VEP or an Eye Movement Recording, though Dr. Granet did mention that he'd like to get those done before we would do any surgery, maybe next trip.

Dr. Granet came in an immediately put us at ease.  His demeanor is so much different than Dr. Hertle's.  He looked at Jesse and agreed that he has idopathic nystagmus, meaning there probably isn't an underlying cause.  He did say he might have slight, very slight, ocular albanism, or maybe fovia hypoplasia.  Either way, his vision is good and his chance of good vision is very high.  He won't have 20/20 but most likely he will be able to drive even without surgery.  Phew!

He also did something that no doctor has done up to this point, he checked my eyes.  He wanted to see if he could tell if I was a carrier.  I really liked that.  Turns out he doesn't think that I am, but without genetic testing it'd be hard to say for sure.  If you recall, Dr. Hertle was thinking that it was carrier and that it was X-linked.  So, who knows, but it just goes to show you that there's so much to be learned yet about nystagmus and specifically what causes idopathic nystagmus or congenital nystagmus.

So his refractive error is good, and he can see well, however he does have a head tilt down and in the past few weeks we've also started to see him looking out the hard corners of his eyes.  Not turning his head yet, but it could be a sign that a second null point is developing.

To that end, Dr. Granet recommended that we wait for surgery until we know for sure how many null points are established.  This would give us the best chance for a successful outcome, as the surgery that he performs needs to be tailored to the movement of the eye, and if that hasn't yet stabilized, then it's possible we'd do one surgery to correct a chin down head tilt, only to have to come back a few months later for a side tilt.  

After the exam Dr. Granet stayed with us as long as we had questions.  He never made us feel pressured to rush our questions and let us ponder our thoughts after each discussion.  He also took the time to explain things to us in engineering terms.  He understood that we were both engineers and needed to understand what we would be signing Jesse up for.  We also needed facts and data.  We couldn't just say "oh, he's the doctor, he knows best"  We needed to know and understand.

One other thing happened that really made Dr. Granet stand out to us.  He had just finished seeing a teen age patient who'd come out of surgery only a few days before.  She was still in the office and so he asked if she would mind meeting us.  It was so nice to meet her and be able to see his work and get her thoughts on the surgery and what it was like now 3-4 days later.  

Coming out of his office Jeremy and I felt so much better about him as a person than we did with Dr. Hertle.  Not that we don't think Dr. Hertle isn't a great doctor, I'm sure he's amazing, but we just never got that warm fuzzy feeling like we did with Dr. Granet.  Dr. Granet put us at ease.

I should also mention at this point that Dr. Hertle and Dr. Granet do very similar, if not the same, type of procedure for nystagmus correction.  However, what we got from Dr. Hertle was a doctor talking to us in terms of numbers "Surgery #2" is what we would have done.  What we got from Dr. Granet was someone who took the time to explain to us what he would do, even draw diagrams for us to understand, and didn't simplify our surgery down to a number.  He was careful to point out that the exact number of muscles he would cut/move would depend on Jesse's null point(s) at the time and we wouldn't know until he did some further tests.  Basically, surgery is customized to each patient.  That made a lot more sense to me.  

So we've cancelled our surgery date with Dr. Hertle and we've scheduled a follow up appointment with Dr. Granet for the new year. 

We're feeling good about where we stand now and we know that someday soon Jesse won't even remember any of this.  But not too soon, I'm not ready for him to grow up yet!

For the previous post click HERE and to read our story from the beginning, click HERE.

To view the next post, click HERE.

Tuesday, July 5, 2016

A trip to see Dr. Hertle

A trip to see Dr. Hertle in Akron, Ohio

Today we went to see Dr. Hertle in Ohio.  I can't believe it's been 10 months since we initially found out about Jesse's nystagmus.  We were so worried and scared.  Now he's an active 13 month old, walking everywhere, and trying his hardest to keep up with his brother, Max.

Fortunately Jeremy's parents live only about 1.5 hrs from Akron, Ohio, so we were able to combine the trip to Dr. Hertle with a family vacation and July 4th picnic (more on that later).
The facility at Akron Children's is small but nice enough.  Our appointment was at 10am and they were right on time.  The staff was very pleasant and everyone was super friendly.


First we saw Dr. Hertle for a quick introduction.  He almost immediately noticed Jesse's head tilt of about 10-20 degrees down.  I had long suspected that he had a null point up (chin down), but his chin was never planted in his chest, so it's not super noticeable, especially because he doesn't use it all the time.  Apparently most kids will eventually elect to stop using the null point because it hurts their neck and back, but then of course this means that their vision is worse because they aren't using the part of the eye that allows for the best sight.

Eye Movement Recordings

Next up was the Eye Movement Recordings (EMR).  For these Jesse's eyes were recorded for 3 minutes with an infrared camera in a dark room.  He did pretty well and we finished on the first take.  They also did a 1 minute standard video recording with the lights on.  This was fairly well tolerated.


Visual Evoked Potential

After the EMR was the Visual Evoked Potential (VEP).  This test is done to test the optic pathway between the eye and the brain.  This was the most difficult test.  Jesse was not happy.  For the VEP they place a large electrode on the forehead and three smaller ones on the back of the head.  They also place a probe on their right ear.  They then cover up each eye and show a series of black and white checkered images on the screen.  Each image has a red dot in the center and they last for a minute, with the image moving slightly.  I think they need about 4 good recordings per eye.  The key to good waveforms is that the child must remain calm and look at the screen for the whole minute.  Jesse did amazing and we were able to get all the recordings done in a short amount of time.  I think we wound up having to do 6-8 recordings per eye to get good ones.   To keep him calm we sang songs and dangled little fake spiders and frogs in front of the screen on strings.  I will say, his head tilt was very noticeable during the test, which makes sense because he was concentrating so hard on the screen.

(VEP right eye)

(VEP left eye)

Eye Exam

After the VEP test they dilated Jesse's eyes for his final exam, which was an eye exam by Dr. Hertle.  Since Jesse was happy and alert, Dr. Hertle was able to do his eye exam in about 5 minutes.  Obviously he's not old enough to read an eye chart, but Dr. Hertle did look into his eye for pigmentation and any refractive error.

After all the tests were done (about 2 hours for us because Jesse was happy and cooperative), Dr. Hertle gave us his opinion.  

The Results

He believes that Jesse has a null point up resulting in a downward head tilt of about 15-20 degrees.  He believes he only uses the head tilt when he is in a new or novel environment and he is trying to visually capture everything.  Dr. Hertle believes that Jesse has some mild nearsightedness which doesn't require glasses at the moment, but may in the future.  Apparently 80% of kids with nystagmus need glasses at some point.  He also believes that he has mild ocular albinism.  

A Possible Cause

He also believes that Jesse's nystagmus is caused by some developmental disturbance of the visual system in utero.  When in utero, the enzyme system that makes pigment and give our eyes their color, helps guide and develope the retna, optic nerve, and fovia.  After birth it produces pigment.  If it functions well in utero but doesn't function after birth you get the blond hair blue eyed race.  If it doesn't function well in utero you get visual problems and nystagmus.  In Jesse's case, it most likely didn't function well in utero and didn't function after birth: nystagmus & blond hair/blue eyes.  Dr. Hertle believes this led to a slightly underdeveloped retna and lightened optic nerve -- mild albinism.  About 65% of the operations on patients with albinism have a head down tilt.
He believes that Jesse's nystagmus is caused by a X linked dominant trait from Shelley.  An X linked dominant trait is expressed differently in every child.  He believes that for some reason the X linked dominant gene didn't present itself in Max the way it did in Jesse.  Because they are boys, it's 50/50 that if this is caused by an X linked dominant gene they would have presented with nystagmus.  If they were girls, they would have another X from dad and would not have nysagmus because they would use the good copy of the gene.  This is the rarest form of albinism.  

Why X linked dominance instead of recessive or other?  Becuase Max has the blond hair and blue eyes but no nystagmus.  Recessive genes tend to show very consistent traits from child to child, where dominant genes are not.  It wouldn't be X dominant from Jeremy because he gave the Y chromosome.  

Dr. Hertle did say that Jesse's fovia and macula look good, and the pigment in the fovia area looks good which goes along with good visual potential.  Phew.  

Going Forward & Possible Surgery

In his crystal ball, he can't tell us what his vision will be in terms of numbers.  He does say that his eyes will probably not handicap him.  Nystagmus will guide his life a little bit, but it won't hold him back.  Most of the kids with postures (head tilt) at this age will have vision good enough to drive.  He will play sports and have friends.  His education and learning won't be inhibited by the nystagmus but he may need minimal 

Having said that, he thinks he would benefit from treatment (surgery).  He doesn't want him to have to make a choice with his vision.  His visual system is not static.  It's dynamic based on his mood, environment, and time.  The world looks different all the time.  So he tries to gain his best vision by putting his eyes where the nystagmus is the least (chin down).  When he doesn't care that much, he won't posture his head but when he does care, he will posture.  The reason for the treatment, muscle surgery, is to give him the best vision straight ahead (primary) all the time so he doesn't have to make a choice between best vision and posture.  This will become more important as he grows older and starts studying more and learning more in school where he has to concentrate.

The surgery (standard eye muscle surgery - procedure #2 as he calls it) will change the nystagmus and not only bring his null point up to primary (straight ahead) but also expand their best visual field from a cone to a balloon.  That is, larger field of good vision in addition to posture.  It's possible that the surgery won't make the posture go away completely, but it would greatly help.  For this surgery an incision made on white part of the eye and muscles are cut and reattached - He operates on three muscles - the oblique, lateral rectus, and superior rectus.  Operation #2 is three muscles on each eye - recess the superior rectus, myectomize (a piece out of this muscle) the inferior oblique, and tenitomize with reattach (remove and reattach) of the lateral.  

The operation is out patient and takes about 30 minutes.  

Side Effects

Side effects: 10-20% of the kids that have muscle surgery to treat nystagmus need a second surgery to correct a new null point, lazy eye, or some other condition that could develop within a few months or even years later.  Because Dr. Hertle does about 10-12 eye muscle surgeries a week, this is about 1-2 children.
Final Results & Choices

So we will get the quantitative results from the ERP and the VEP in a week or so, but they will probably just confirm what Dr. Hertle believes right now.  

Now we have a choice.  Should we do something and if so, when.  Dr. Hertle believes the risk of doing something is less than the risk of doing nothing and the best effect would be when they are younger.  But of course it's easier when you're removed.  As Jesse's mom and dad this is a huge decision for us.  

I think we've always believed that we would always have surgery for Jesse, but now that time is approaching it's such a difficult decision.  For me having confirmation of his head tilt, and really noticing it as he was trying to concentrate on the screen during the VEP makes me feel that the surgery will help him and it gives me confirmation that he will need correction someday to have the best possible outcome in school and in life.  However, is that time now?  I know if we do it now then 6 months, a year, three years from now this will just be a blip on the radar.  But what if something bad happens.  What if he's in that 20% that needs a second surgery.  What if something goes wrong and his vision gets worse?  He's such a happy go lucky boy, I can't imagine doing anything to him that could change that.   

Decisions, decisions.

Then of course there's the question if we wait and go with Dr. Lingua's procedure.

If you haven't been following with our journey, click HERE to start from the beginning.  

Saturday, April 2, 2016

Spring Break 2016: Cancun, Mexico

Cancun was... AMAZING!

I love the water.  I grew up a water baby and I've successfully turned Max into one too.  

For the past year I've been trying to find the best time to take a family trip to the beach.  November looked promising but the abundance of seaweed and the fact that Jesse wasn't yet mobile made it a less than ideal time to visit the Caribbean.

As we headed into 2016, spring break was approaching fast.  Last time we kept the kids home for the week it broke us, so a trip somewhere was definitely in the picture.

After spending days researching hotels, making lists and reading trip forums, I narrowed it down to a handful of hotels in the Cancun and Playa del Carmen area that were geared toward kids: Iberostar Cancun, Iberostar Paraiso Lindo, Iberostar Paraiso Maya, Paradisus Playa del Carmen, Royal Solaris Cancun, Barcelo Maya Palace Delux, Paradisus Playa Del Carmen La Esmeralda, Hotel Ziva, Sando Playacar.  

Update: I also just found out about the Barcelo Maya Caribe from a friend and I think we may check out that resort next year. 

We finally settled on the Iberostar Cancun.  The main reasons for this choice were:

1) kids water playground out by the main pool and activity area 

    (read: not tucked in the back of the property)
2) beautiful beach steps away from the pool and visible from the pool 
3) really nice big pool and gardens with swim up bar, of course
4) decent reviews of the food
5) all inclusive

While we typically aren't 'all inclusive' type of people, for this trip it was definitely the way to go.  At first I was very nervous about spending 3 1/2 days just lounging by the pool and playing in the sand, but it turns out that the time flew by and we could have easily stayed a few more days.  The kids kept us active between the big pool, kid water playground, and the beach.

We didn't even get a chance to leave the resort to visit Tulum or Chichen Itza or go down to the water park Xcaret.  Perhaps on the next trip.  

As for food, we did get to try out all the resort restaurants, as I was able to reserve our dinner time as soon as I booked the room.  This was key since they were booked out at least two days in advance.  Of course there was always the buffet option, but being the planner that I am, I always had a special restaurant booked for dinner.  We enjoyed the steak house and Mexican restaurant the best, but the hibachi was good too and Max seemed to enjoy the show.  The snack bar had some really good burgers for lunch and one day they even did paella by the beach.

Some highlights from the trip include:

 - Being able to push the second bed into the corner so Max and Jesse could sleep together and thusly Mommy and Daddy could share a bed.  

- Jesse sleeping incredibly well in the big bed with Max.

- Max waking up, rolling over to Jesse and signing "good morning Jesse"  

(it's a song we wrote and sing to Max or Jesse when we need to wake them up.  As adorable as it is, it's also not so great when Max wakes up Jesse, loving or not.  It's too cute to stop, but come on kid, give us a break.)

- Daily naps for the kids by the pool.  Yep, max would crash out on a padded lounge chair for about 2 hours each day pool side.  It was great.  Poolside naps are, in a single word, awesome.  

- Family nap time poolside on day 3.  Did I mention that we got both kids napping at the same time!

- Sand castles on the beach.  The sand was so nice.

- Getting drinks from the swim up bar!  Max loved his blended fruit drinks.

- Pina Coladas! 

- Being lazy and doing nothing for 3 1/2 days.  

- Fun Frozen show Wednesday night.  Max loved it. 

Overall I'm really glad we choose to come to Cancun and this resort, we had such a great time. 

Check out the full set of pictures HERE.