Sunday, September 24, 2017

Jesse 4 weeks post surgery

We are now 4 weeks post surgery.

Jesse is doing great and acting like his normal self.  The redness in his eyes was practically gone at week two and he's so happy to be back to school and playing with his friends.

Given we are pretty much healed, it's a good time to evaluate how effective the surgery was.

His chin down tilt is completely gone. Yay!  This was the one he used most often.  So we are very happy about that.

His left turn is mostly gone (i'd say 80% or more) but sometimes he still does it.  Habit?  Maybe.

What we do notice is that he still has a left tilt (left ear to left shoulder).  Remember when I described the surgery and said that we only operate on 2 of the three eye muscles?  Well the tilt is mostly corrected by operating on that third muscle.

Where does that leave us?

Well, we are going to wait and see.  Jesse goes for his follow up in two weeks but I know in my heart we aren't ready to jump into surgery #2 yet.  We want to wait and see how he develops.  If there's anything these last two years has taught me is that we don't have to rush into anything.  We will likely do a second surgery anywhere between 6 months from now and 2-3 years.  But heck, maybe it will be 10 years.  We just have to see how he adapts, how much he uses that null point.  We constantly weigh waiting to see if his null point changes vs wanting to do surgery as young as possible (pre-kindergarden).  Learning from my older son, they really get into writing in pre-k around age 4, so likely that will be our next driver.

left head tilt

Thank you for following along and I hope that these blogs have helped.  I anticipate this will be the last for a few months until there is something notable to write about.

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Jesse has eye surgery - Days 3 - 7

Heading into day 5 now, and Jesse has been a trooper.  He isn't rubbing his eyes much and they are healing well.

Day 3 - 2 days post-op

Day 3 we visited Dr. Granet.  This is now 2 days post-op and we were eager to see if he would be cleared to go home.

First, just let me say again how much we love Dr. Granet.  Yes, he's usually running late.  A lot late.  Several hours.  But he spends so much time with his patients.  On this day he was in surgery all day but he was gracious enough to see us afterward.

We spent nearly 45 minutes with Dr. Granet going over the procedure, seeing how Jesse was healing, talking about the next few weeks, and 'worst case' scenarios.  He explained that he only cut and reattached the muscles but he didn't remove any muscle, so anything he did could be undone.  He also didn't touch the obliques, so if Jesse still has any type of head turn, we can go in and use those muscles to correct that.

I did make note of my concerns that his eyes don't seem in sync with each other.  He looked and when Jesse is looking straight on they are aligned well.  As for looking side to side, we just have to wait and see how they heal.  The left eye is certainly more "tight" than the right and you can tell especially if he looks to one side or the other.  The eyes go immediately out of sync.  How that heals over the next few weeks will let us know if there are any issues we have to go in and fix.  (probably more socially than vision).  He does not have strabismus (where one eye is pegged inward or outward), but if the movement doesn't sync up for side to side vision, we may explore our options for a second surgery.  We knew going in that was a possibility.

As for Jesse's null point, those are pretty well gone.  He hasn't looked hard to the right or chin down.  So that's awesome!  That was the main thing we wanted to correct.  Again balancing eye movement with null point.  Sometimes you can't have it all.

so brave.  first time using the machine.

Day 4 - 3 days post-op

I made a short video showing Jesse's eyes at the end of day 4.  As you can see, the horizontal movement is still there and probably will be to some extent forever.  Nystagmus surgery doesn't always stop the movement.  It may dull it down, but the goal of the surgery to correct the null point(s).  To make it so his best vision is facing forward.  I always said if his null point were to the front I would never do surgery just to correct the oscillation of the eyes.

His left eye still won't open as far as the right and the eyes are still very red.  As for how Jesse reacts, he honestly couldn't care less.  He is happy, he's playing, he doesn't notice except for an occasional rub which Mommy reminds him not to do.  He will still have the eye ointment for the next 5-ish days.  (applied at night when sleeping, so there's no fuss)

video


As a reminder, here are some pictures of Jesse before surgery.



chin down as far as it can go to see what's in front of him

looking for pasta in a sea of vegetables

using the right null point


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Jesse has eye surgery - Day 1 and 2

Jesse had his eye yesterday and I tried keeping good notes about my feelings and his progress.  I know that I found it invaluable when others who've been through this shared their experience and I want to provide another data point for other parents out there.  But I also want to capture what this is like in case we have to go through it again (praying we don't).

Surgery Day (Day 1)

(As an engineer, I can't help but wonder if Surgery Day is day 1 or day 0.  But that's a completely different post for another time)

5:45 am

We are dressed and ready to go.  I'm looking over at the bed watching our sweet boys sleep so peacefully next to each other.  I wonder if this is the right decision.  Are we right to do the surgery?  I'm scared.  Scared his eye will be misaligned as a side effect.  Scared it is unnecessary.  After all, he gets on just fine today.  Yet, I look at pictures of him watching his ipad and I see his extreme head turn.  His struggle to hold his neck at a weird angle (right or down).  I know this is the right call, how could we not try to help him?

My fear now turns to the cough he's had for the last few days.  His lungs sound clear through a stethoscope, but that's my non-doctor opinion.  It makes me nervous the anesthesiologist will not clear him for surgery.  All this waiting, all this time.   I hope he's well enough.

7:15 am

We are in the waiting area and all changed and ready to go.  Jesse is wrapped up with his Minnie and his "de-de" (blanket).

The anesthesiologist checked him out and was completely unfazed by his cough.  Phew.

He is scared but so strong.




7:20 am

Jesse is given some liquid medicine to help him calm down and relax.  Within 10 minutes he's completely loopy and out of it.  He heads back around 7:30, Mom is crying but Jesse seems okay with what's going on.  Dad is holding it together and Max is unfazed.

9:20 am

Waiting is HARD!

The surgery was supposed to be 1 hour plus time on both sides for anesthesia.  He was wheeled back at 7:30 so we are approaching the 2 hour mark.  I'm getting pretty nervous now.  I'm trying to play with Max to keep my mind off it.

I guess this is a good time to have a 4 year old with you because they are a good distraction.  Breakfast at the cafĂ© helped too.

9:45 am

Dr. Granet just came out and looks happy.  Phew!   2 hrs and 15 minutes after they first took him back.  He said everything went as perfect as he would have wanted.

As we discussed, he operated on two muscles on each eye.  He did not touch the oblique's because we wanted to be conservative and reduce the risk of strabismus (noted difference between Dr. Hertle and Dr. Granet).  Dr. Granet stressed the chin down null point over his head tilt and he also worked considerably on the head turn to the right.  It's hard to correct for chin down, turn, and turn all at the same time, especially when only using 2 muscles, so we had to decide what to stress.  I think this was the right call.

At this point it is a waiting game to see how Jesse responds.  A week out (9/5 ish) we should know how successful the surgery was and if he will need further correction.

Jesse did get some Novocain in his eyes to help numb them, but the doctor warned that he would wake up upset because he's 2 and is a "body without a brain" so he wouldn't understand the feeling of the novacain.  Valid.

10:00 am

Jeremy is allowed to go back and be with him.  He's crying a lot and wants Daddy.  He has weights on his arms so he can't rub his eyes, so that's not helping.


10:42 am

Jesse is discharged.  4 hrs from arrival to discharge.  He is pretty uncomfortable and moaning a lot.  Jeremy holds him as daddy, de-de and Minnie are requested the most.

....

From 12 - 6pm I take Max out to Coronado beach.  We play in the sand, run in the water, eat gelato, and then come back to the hotel to swim in the hotel pool.  He's such a mama's boy.  I love the water.
Jesse spends the afternoon sleeping and resting.


....

6:50 pm

Jesse opened his eyes for a second to watch Mickey and Jake and the Neverland Pirates.  He closed them pretty quick and decided he could listen and eat goldfish with his eyes closed.  He's not too red but they were dancing like crazy.  Is this normal?  Mom is nervous.


7:50 pm

Jesse opened his eyes again to read some books but he's quite lethargic and just looks sad.


Surgery Day (Day 2)

7:00 am

Jesse woke slightly cranky but his eyes opened pretty quickly.  They are red but not awful.  (I suppose that depends on your definition but compared to what I had envisioned, it's not bad)

9:00 am

Jesse is up and playing with legos, trains, and acting pretty normal.  His eyes are mostly open and he is very talkative.  The eyes are dancing quite a bit and there is noticeable misalignment between the eyes.  His left eye, with the most work done on it, won't seem to reach the outside corner.  Is this normal for the day after surgery?  We just have to wait and see.  I'm praying it corrects itself and goes away.

26 hrs post surgery looking at the camera.
(It should be noted that he could pretty much do this pre-surgery
as well, as he never really had a head tilt/turn in pictures. 
But here you can see some redness and soreness)

video

....

Today Max and Daddy got to go to the San Diego Zoo. Apparently it's AMAZING!

...

1:00 pm

Lots of play time today.  Legos, trains, painting, and lots of ipad time.  His favorite.  He still does his head tilt and I'm not sure if that's because 1) the surgery didn't work, or 2) because we didn't correct for a tilt that much (remember, it's hard to hit all 3 directions w/o touching the oblique's) or 3) maybe he's just so used to tilting his head to see his ipad that's what his normal is and he doesn't yet know that he doesn't have to do that.

28 hrs after surgery

1:30 pm

I'm finally getting this kid down for a nap.  I guess that's a good thing!  He only wants to eat goldfish and crackers but who am I to argue with that.


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Surgery T-2 Days

What a roller coaster.  We are two days out from surgery with Dr. Granet and I can't believe it's actually happening.  I'm excited.. I'm nervous.. I'm scared.. I'm ready.

You see, Jesse was supposed to have surgery with Dr. Granet back in June.  However, a major family emergency took him away from his practice for nearly 3 months!  Unfortunate for us and all his patients, but mostly for him and his family.   Yes, our surgery got cancelled, but at 2 years old, Jesse didn't know any different.  Mom, on the other hand, was pretty disappointed.

Now, however, we are two days out.

Two days from major eye surgery.  Two days from putting our little boy under anesthesia.  Two days from a life changing procedure that could mean that he won't have to use a null point to see the TV or read a book.

NERVES!

But we are excited.  I've talked to Max about how Jesse won't be able to play for a few days, or weeks.  I've talked to Jesse about being in a hospital and having surgery.  He points to his eyes and says "surgery on eyes?"  "Yes" I say back to him, "But it will be okay.  It will help you see better"

Stay tuned...



Jesse - August 21, 2017
1st day of pre-school (age 2)


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Sunday, June 4, 2017

Yosemite 2017

Visiting Yosemite over Memorial Day is no easy feat.  First there's the reservations.  Made 365 - 4 days in advance for any of the hotels and 6 months for the campsites.  Then there's the bus system, which is tolerable at best, yet better than driving on such a busy weekend.  But in the end, it was completely worth it.

(Visitors tip: You can book hotels 365 days in advance for your date + 7 days out.  So if you really want that hotel on a holiday weekend, here's what you've got to do.   For a stay at the Yosemite Valley Lodge, Friday 5/26 - Monday 5/29, I called on 5/23 and booked from 5/23 - 5/29.  After a few days I then called to modify my reservation and cancel the early days, leaving only 5/26 - 5/29.  This way I was sure to get the room I wanted on the days that I wanted.)

Friday - Fresno Underground Gardens & Bridalveil Falls

Having packed Thursday night we were able to hit the road around 8am on Friday.  On the way out to Yosemite we took a detour down to Fresno to visit some underground gardens.  Apparently in the early 1900's this guy from Sicily immigrated to the US, initially to Boston and then out to California.  Though he wanted to be a citrus farmer, he soon discovered the hard bedrock of Fresno, where he had settled.  In an attempt to beat the summer heat, he began digging a series of tunnels and rooms underground.  He built excavated over 10 acres of rooms and tunnels complete with skylights, underground citrus trees, a kitchen, multiple bedrooms, a "driveway," a pond which he could view from beneath, and even a system to direct rainwater from the skylights away into his sump system.  He was also able to mate and fuse trees in such a way that he could get up to 7 different fruit varietals growing from the same tree.


After a short tour we headed back north to Yosemite.  Arriving around 5pm, we stopped at Bridalveil Falls and did the short 0.3 mile hike up to the waterfall.  This was our first introduction to exactly how much water Yosemite had gotten over the last few months.  The water was RAGING and the base by the falls was WET!  Max's first reaction to seeing all the water was "Oh My Gosh.  Mommy, Oh My Gosh!"  Max braved it out all the way to the falls and we all walked back to the car soaking wet but with a great memory and a story to tell.




Saturday - Lower & Upper Yosemite Falls + Swimming!



We took the boys balance bike and scooter up to Yosemite with us, so they had fun playing with them on the path behind our hotel on Saturday morning.  Next year I want to bring all our bikes as well as a trailer so we can get around the valley floor easier.

After a not so great breakfast from the Yosemite Lodge (so bad it's worth noting), we headed out to the lower falls.

Right at the trail start is a large boulder.  After years and years of kids playing, a nice slide had formed on one side.  Max made quick work of learning to climb up and slide down.


The lower falls trail is about a mile loop and the lower falls were raging, like all the rivers and falls in the valley.  Fortunately we had our ponchos now so we could hang out by the falls for a while without getting too wet.



Jeremy and I decided that nap time was a great time to do the upper falls trail.  With both boys on our backs we headed up, up, up.  We made it a little over a mile past the overlook before deciding to head back down and get out of the heat.  On the way up we even saw a baby rattle snake!  I didn't feel like getting close enough to take a picture.

After our hike we arrived back at the lodge with just enough time to change into swim suits and take a quick 30 minute dip in the pool before closing.  Of course the kids LOVED the swimming.  Especially Max.

That night we ate at Curry (Half Dome) Village.  The pizza was a long wait but delicious as always.  It probably helped that there was no line for the beer and a lot of running around area for the kids.

Sunday - Mist Trail

Sunday we got out early and headed up to the Mist Trail.  We got there around 9 am and headed up the trail.  Jesse stayed in the pack on Jeremy's back most of the hike but Max did nearly the entire 3+ miles by himself!  This even included hiking up Vernal falls where the term "mist" is a bit of a misnomer.  When the high Sierras get over 80 feet of snow in a single winter, the water is raging in the valley.  We were soaked by the time we got to the top, but Max did amazing.  Once at the top we stopped for a lunch on the rocks in the warm sun, then headed back down the long path to the right so we didn't have to go down the slippery steps we'd just come up.  What a great hike, I highly recommend this and I would add on Nevada Falls if you have the energy.

Hiking up by Vernal Falls. 

Beautiful Rainbow

Hiking up Vernal Falls

He made it!

Jesse made it too!

Beautiful views.

Getting the Yosemite bus back to our hotel took over 45 minutes + drive time, so we opted to stay at the hotel for dinner that night as well.  Unfortunately because it took so long to wait for the bus, we missed out on swimming.  Max was super disappointed.  But he did get to "work" in the dirt while we were waiting for the bus.

Monday - Meadows, Bridalviel, & Homebound

Come Monday we opted for a quick breakfast then a walk through the meadows before heading home.  Because of all the rain the meadows were quite heavily flooded and you had to stay on the trail.  The boys enjoyed throwing rocks and sticks into the water.  We watched how quickly the river took away the lighter sticks thrown off the bridge.



As we headed out of the valley we stopped once again at Bridalviel falls and did the short walk one more time.  This time with ponchos so we could hang out at the falls and enjoy them for a little longer.


What a great weekend.  I realize how much I love Yosemite and although it was crowded over memorial day weekend, I can't wait to come back.  Next year I think we will camp (if I can get a site) and stay either in half dome village (old curry village) or near there since we like that area so much.

Sunday, May 7, 2017

Spring Break 2017: Cancun, Mexico

Now that we live in California, each spring the boys have the "privilege" of having a whole week off daycare for spring break.  (No, mom and dad don't see this the same way, and yes, we do still pay for the week even though we aren't there :-/).


If you recall, last year we jetted off to Cancun.  Since we had such a fun time at the Iberostar Cancun resort we decided to go back again this year and tack on a fourth day.

As it turns out, it's about a 10 hour journey from takeoff to landing in Cancun + travel time to/from hotels and house.  All together that makes for a very long day.  The boys do great flying and fortunately crash out for about half of it.  

There are many things that I like about the Iberostar Cancun.  First, it's small so everything is very close.  Secondly, the kids pool is right out front by the beach and the adult pools.  Also the food is decent and it's easy to reserve restaurants in advance or even when you get there.  And although I would get up at 6:30 am to reserve chairs because we were particular, you could easily find chairs any time of the day.



Our daily routine stayed pretty standard over the four days.

Wake up at 6:30 to reserve chairs then crash back out till 8 (for mom at least).  Everyone wakes up between 8 and 9 am.  Then it's off to breakfast.  

AM Beach time!  We learned last year that it is a good idea to do the beach in the morning since you'll have the rest of the day in the pool to get the sand off before returning to the room.  (I also learned by day four that playing in the sand is infinitely more pleasurable with shorts on).




After 2-3 hours of sand play we headed back to the pool area for lunch and some naps.  The kids can't resist the sound of running water and a full belly to put them down for a good 1 1/2 - 2 hour nap.  While the kids napped by the pool mom and dad played pool games in the area behind them or just sat and had some time to talk, what a concept.

nap time.

more nap time!

After naps we typically played at the pool until 6pm.  This included their awesome kiddie pool complete with pirate ship as well as the big adult infinity pool with swim up bar.  Plus the kids loved scurrying about all the other smaller pools that were connected.  They would pretend that water was "hot lava" that they either had to avoid or put on their "hot lava boots" to walk in.  It was so adorable watching Jesse run around with his hand out saying "hot lava! hot lava!"

max was so happy to drink from a coconut

water gun fights!

such a happy boy

two boys at the swim up bar waiting for their "special drinks"

Around 5:30 or 6 we would all be ready for a shower and some dinner.  We were able to get dinner reservations for the restaurants each night but we also checked out the buffet one night and that seemed pretty good as well.




After dinner they had kids shows at 8pm and then the full family show at 9:30.  We only caught some of the family show one night because the kids were so tired, but they did have fun running around the open air theatre between shows and playing on the stage with the other kids.  One night was Mexican themed night and, well, we had to take this picture.


Strangely enough, out last night we even saw some minions running around the hotel lobby/bar area!




In true vacation form, we had fun right up until the last minute.  As we boarded our final flight from LA back to Oakland, Max wanted to look in the cockpit.  The pilot invited both boys in and let them play with all the switches and levers while the rest of the people boarded.  They were up there for like 10 minutes easily.  


Thanks for a great time Cancun!  We will be back!