Christmas 2016

The kids were very excited about Christmas this year.  I always find it interesting that there are so many elements of parenting that are not as I expected and this is one of them.  I expected kids to "get" Santa much earlier.  Don't get me wrong, they have been excited about Christmas for years, but I don't think it was until last year that they really started to think about Santa ahead of Christmas - so we'll call that age 5. Then this year I've already heard "that Santa is not real" and that's age 7.  One thing that is different for my kids than for me growing up is that they see Santa in SO many places, but not always top quality Santa's which means they don't have real beards and the kids clue in that they must not be THE Santa.  Which, of course, can be explained because Santa has so many helpers, but still.  The questions begin.  Before kids I always thought the magic lasted for so long. I'm hoping we can hold on to it for another few years.  Hearing the squeals when they saw presents under the tree and realized Santa had come was so fun to watch.

Reagan only had a few items on her wish list.  The first was Zoomer Kitty, which was actually on her list from last year but Santa didn't bring it.  She was excited that you could get the kitty in pink this year (only black last year).  It is a high tech toy that meows, purrs, follows you and plays with a ball.  She also wanted the American Girl doll, Leah.  She's a beautiful doll and a good addition to the family.  She also really wanted Littlest Pet Snuggles Tiara.  This was a gift she has wanted since her birthday but again, something she waited for patiently. It's a dog that opens and closes its eyes if you rub his nose.  It snuggles with you when you hold it and it makes noises.  Her most desired toy was CHiP, which is a robotic dog that is the next generation of Zoomer Kitty.  Unfortunately she did not receive this toy, but perhaps one day :)


There was also a very popular toy (and hard to find) called a Hatchimal that she was hoping Santa would bring her.  Luckily Santa found one for her and one for her brother.  It is an egg that only hatches when you give it love and attention.  The animal inside rotates and pecks the egg until it cracks open.  There are five species of these Hatchimals and you don't know exactly what color you will get until it hatches.  Reagan and Cole both got the Daggle which is somewhat like a dragon.  Once born, it plays the happy birthday song but is only an infant.  The more you play with it, the faster it grows up (through toddler to adulthood).  By the end second day it had learned to repeat words.  Reagan taught hers to say "I love you."  It has activity appropriate responses.  For example, if you rub it's head it purrs. If you throw it in the air it says, "weee."  So far they are having a lot of fun with it.

Cole had a much simpler list that only included "a car that I can fit in to drive really fast."  Unfortunately Santa did not bring him the toy he wanted.  I reminded him that you have to be 16 to drive a car like that, but he still couldn't think of anything else he wanted for Christmas.  He is having fun with his Hatchimal, though.  He also loves clothes with the Nike swoosh so he got two new sweatshirts and a pair of pants.  He also got a superman costume, scrabble game, a robot building kit (like Legos) and a new iPad. His last one was about 5 years old and after the screen shattered it never worked right again even though the screen was replaced). The kids big gift from mom and dad was an air hockey table. They were very surprised and have had a lot of fun with it! Luckily it keeps score so there will be no fighting about who is winning :)

Following tradition, we went to Grandma and Grandpa's for brunch.  Reagan received a Nutcracker music box and Cole received a lap harp which he didn't want to put down! He is excited about using it during his music class.  After visiting for a couple hours we headed home and hosted Johnny's family at our house.  It was so fun to be able to use all the beautiful Christmas dishes we received for our wedding.  Nana and Pop came in addition to his sister Vicki's family.  We had a fun time catching up.  Reagan received a Lego set and Cole got a remote control race car. They also got gift cards towards new shoes. Unfortunately with the craziness of hosting I didn't take one picture!  Not to mention I didn't get a single picture of Johnny and me all day.  Terrible!

I hope that one day the kids will enjoy reading this blog (I print it every year) and remember the types of things they wanted for Christmas.  I find most of my Christmas's as a kid are a distant memory.  I hope that documenting it for them will help them remember years' past.  In 2004 I started a scrapbook to remember things from my grandmother.  I took pictures of everything she had given me and I sent her paper precut to fit the pages to write a story about each item she had given me.  Then I put her hand written note with the photo in the scrapbook.  I truly cherish having that book and love that my children will know that history.  A few of my favorite things from her include a very old trunk that she thinks came with her family on a boat from Germany to the United States (the lock is dated 1817), a cookie jar she remembers getting for her birthday in 1950, and salt and pepper shakers from a collection her mother had with over 300 sets!  So many things in our world today are expendable so we don't keep things like we used to. But I often look back at my own photo books and blogs and remember things my children love.  I can't believe in just a few short days we will be wrapping up another year!  It really is true that time seems to go faster as I get older...

Trialing Visual Prosthetics, Contacts: Take Two and the Developmental Pediatrician

We visited Dr. Mojallal last week to try the NuEyes Visual Prosthetics/video glasses.  I had a deal with Cole that he was going to put the contacts in and we prepared all week.  Unfortunately when it came down to it he just couldn't.  He says he's afraid his eye ball is going to get poked into his brain and get stuck there.  We took a step back and let him take a "contact class" with the optometrist which entailed trying to teach him how to hold his eye lid and practice touching his eyeball.  Unfortunately nothing worked. 

Although the NuEyes can be ordered with his prescription lenses, it is too hard to test and see if he would benefit from them over his existing glasses.  So to get a good idea whether we should get these glasses we really need him to wear the contacts.  The NuEyes are AMAZING!  I expected it to feel uncomfortable having the image so close, but it wasn't awkward at all.  You literally say, "glasses closer" and they automatically zoom closer to whatever you are viewing.  Similarly you can say "glasses further."

So Dr. Mojallal said to go home and keep working with him on the idea of putting in the contacts.  He asked us to come back once he is able to touch his eye and when Cole says he's ready to wear them.  At that point we will then reinvestigate the glasses.  I did call our insurance company and I am able to get a policy for them.  It's not cheap since these are considered medical equipment and have a higher rate, but still good to know that we wouldn't have to pay full replacement value!  The doctor also said he has some ideas where we may be able to find grants to pay for them (they are over $6,000). So we will keep trying and hope that he will adjust to the idea sooner or later.

We also had an appointment for Cole with the developmental pediatrician last week.  It went very well and he was very focused for the appointment.  She asked him some tough questions and had him complete some tests to determine how he's doing developmentally.  Overall she said he appears to be on track educationally although he does exhibit some delays when it comes to tasks that require more precise visual involvement and focused attention.  Based on the feedback I provided on behavior challenges at school and what he exhibited during the appointment, she provided some recommendations.

The first is that we request the school complete a Functional Behavior Analysis (FBA) to provide the data needed to implement a Behavior Implementation Plan (BIP).  I met with his classroom and resource teachers to talk through the options.  He currently has a goal in his IEP to have 90% of his time being on-task (aka staying focused).  They provided data from the on-task testing they have been doing which shows there has been an increase in the time he is on-task from 67% of the time to 76% since the implementation of the token/reward system.  After a lengthy conversation we have decided to give this strategy a  little more time to see if it continues to improve before we move to the FBA and BIP since they think the BIP is less motivating than a reward system.  With the reward system, after he gets 9 tokens he is able to choose a reward (playing with action figures, play doh or bubbles).  To gain tokens he needs to 1) raise his hand if he has a question, 2) complete his work, 3) keeps his hands to himself.  While I am not against this system, I worry the time between rewards is too long for him to connect it with behavior and therefore it may not actually change it. But I also believe the whole team needs to be bought into whatever solution we choose if we want it to have an impact.

The developmental pediatrician, Dr. Dharia from Capital Area Pediatrics, also suggested I reach out to the Department of the Blind and Visually Impaired and request a classroom observation to see if we can determine the antecedent to misbehavior.  The theory being that if he is unable to see his work that he will lose focus which could lead to misbehavior (e.g., interrupting his neighbor).  After speaking with our Loudoun County contact (who I've been working with for several years), she suggested I coordinate more closely with his teacher of the visually impaired first.  If she wants additionally support from the state then she would love to come help.  After speaking with his TVI, I am going to provide some additional documentation for her to review (e.g., class work) and get her perspective on whether any additional modifications need to be made for him to successfully complete his work (i.e., access his education).  I'm feeling rather discouraged currently. Mostly because I am not always a patient person and when it comes to my child's education, I want to move at lightening speed (we're definitely not).  The good news is that Cole is on track educationally so we have some luxury with time to figure out the learning part.  But I worked diligently last year (or I thought I did) to be prepared for this year and I'm not sure we've truly figured everything out yet.  I try to remind myself that every child's learning is a slow and steady journey and if I try to adjust my perspective perhaps it won't feel so time sensitive and I won't feel so frustrated.  I find myself volleying from feeling like I am too involved and need to just let nature take its course to feeling like I need to find better ways for him to learn and for him be able to see the work he is expected to do.  And it is with that thought that we are off to enjoy the holidays and not think about school or doctors for a week.

As promised, I have to share the latest funny comment from Cole:
At church Sunday we were praying after communion and Cole leans over and whispers, "Mommy, is it ok if I pray for bad people?" I said, "well of course, they need us the most!" He said, "Ok, then I'm going to pray for the devil. That is one bad dude."

Trip to OH for Cole's Nystagmus Surgery Follow Up

Given Cole has only been on an airplane once and that was to go to Disney when he was two years old, a trip to Ohio on an airplane was super exciting for Cole.  The fact that we were going to stay at Ronald McDonald House was just frosting on the cake.  The excitement started with the moving sidewalk.  Wow, the trip could have stopped there and he would have talked about it for weeks.

Unfortunately we couldn't get a direct flight and the best flights were out of Reagan National so it was a long day with a connection through New Jersey. Breakfast in Arlington, lunch in Newark New Jersey and dinner in Akron Ohio.  We almost missed our connection so we didn't have time to visit with pilot after the first flight.  So when we arrived in Akron the pilot was super nice to move and let Cole take over the cock pit.  He thought it was Christmas!  Then he got to get off the plane on the tarmac given the airport is super small (the only food after security is an Arby's).

The taxi ride in the Dodge Caravan to the Ronald McDonald House was equally as exciting for Cole and he sat in the "way back" which was novel for him.  Then when we arrived at the house he was repeating ongoing "remember when" stories about the security car that took us back after surgery and throwing up outside the house.  Not my favorite memories, but funny none the less.  We settled into our room and decided to hang out down in the family room of the house.

It was perfect timing to be downstairs because they let Cole feed the fish!  Although we have a fish at home, he thought it was pretty cool that when you held the can by the tank all the fish swam over.  And not only that, he has to get his fingers wet, then touch the fish flakes and then put them back in the tank to get the fish food to float into the water.  It was a fun experience for him since our tank at home is much smaller and has only one fish.

Cole also wanted to give the gift cards he collected for the house.  As you may remember, Cole chose to collect gift cards from his friends instead of toys for his 6th birthday.  He collected $250 dollars in gift cards and the Ronald McDonald House was so excited to receive them! We talked about how important it is for the house to be able to buy soap, laundry detergent and food to stock the kitchen.  We talked about how some families need to stay at the house for a very long time.

As we were playing in the family room a little boy came over to Cole and I told Cole to introduce himself.  He and Westin were immediately best friends.  They played together for a little while and then Cole asked if we could eat with him and his dad.  Cole thought it was pretty cool he got to have a play date over dinner.  And the best part is that Cole never asked why Westin's head was completed shaved.  He didn't ask about that scar he had just like Reagan's from forehead to behind the ear or the large abrasion on his forehead.  And he never asked why he was wearing a cervical collar and wasn't allowed to run or jump.  And that is what I love about kids.  They don't always find the differences in people first - they find the things they love and embrace those. We have so many lessons we could learn from our kids.

It was heartbreaking to hear over dinner about the terrible car accident Westin was in with his mother just 8 weeks before.  He had severe head trauma and was inpatient at Akron Children's for 7 weeks and now at RMH while he receives therapy.  Unfortunately his mother did not survive the accident and dad has gone from working dad to the single care giver as they figure out the lasting affects of the injuries and how to move forward without his wife.  I would love all who read this blog to lift them in prayer as they learn to live their new normal.

After playing for a little while after dinner we retired to our room to try to get a good night sleep before testing on Tuesday.

As usual, Cole was up bright and early Tuesday morning and ready to go down to play with Westin.  We got showered, dressed, cleaned our room, stripped our sheets and packed our bags before heading down to the kitchen before breakfast.  We needed to be at the hospital by 8am so we were the only ones down in the kitchen.  Cole was rather disappointed he didn't get to see Westin in the morning.

We walked over to the hospital and were even a little early.  We checked in for our appointment and were caught off guard that they didn't seem to remember that we had both ophthalmology AND optometry appointments scheduled.  They told us to see Dr. Hertle first so we headed back, they ran through the traditional vision exam and Dr. Hertle said he looked good.  He said we should come back in 3 months for the testing once Cole has adjusted to the contacts (that we would be getting in the next appointment).  Rather caught off guard since he told us to come back in December to repeat the testing, I reminded him that we flew here for the appointment and I thought we were doing testing and that's why he wanted to see us back.  He said the testing will tell us more once he has the contacts but if it's easier we could schedule the appointment for over the summer.  Still rather caught off guard I said ok and the optometrist came in to fit the contacts.  Well apparently they were already ordered and she had them in!  Although we were told he needed to be measured for them and that's why we were there, I was excited we were going to walk out with them today!   As a reminder, we are trying the contacts because the doctor said research shows they may quiet the nystagmus by telling the brain something is new and different. Also, by having the lens connected to the eye the light doesn't have to refract twice and therefore is more effective.

Unfortunately after an hour of coaxing and eventually threats, Cole still refused to put in the contacts.  At this point I'm thinking this trip was a complete waste of time and money and I think they could sense my frustration.  I had them speak with Dr. Hertle and we decided to do the repeat testing today.  Unfortunately the testing was rather difficult for Cole and he really struggled to look exactly where they needed him to.  He repeated the eye movement exam where he had to watch images flashing onto the screen.  Then he had to repeat the test where he indicated which dots had lines and which were solid.  The last test he did required him to look into a small black circle and look at a red line.  Unfortunately he really struggled to look in the small hole and keep his nystagmus calm so the camera could catch the view it needed.  But in the end we got the testing done that we needed.  Dr. Hertle said he would send us the results of the testing that will hopefully outline the improvements we gained with the surgery.  But just watching him do the eye exam he said he is doing better.  That was very encouraging.

We headed back in to see the optometrist and I was hopeful after some time to calm down and talking he would put in the contacts but he wouldn't.  So we ended up leaving on the condition that he will put them in with Dr Mojallal next week when we have the appointment to test the NuEyes.  I'm thinking we may need to bring Johnny to that appointment!  He is much better at being matter-of-fact and not caving to the soft side like I do.

So off to the airport we went to sit there for 4 hours and wait for our flight.  Unfortunately I tried to catch an early flight, but nothing was available.  And not only that, it appears as though our flight is already delayed so we will miss our connection.  Luckily there is really good WiFi and a playground.  Hopefully we'll get in sometime tonight.  Ok, back to the playground....

Neurology update, Orthodontist and a New Developmental Pediatrician

Most recently we met with the kids' neurologist, Dr. Lavenstein.  This was an appointment I was a little nervous about because Reagan hasn't had her medication level increased in over a year and a half.  If we don't increase the meds I worry about breakthrough seizures and if we do increase the meds I worry about them making her "snowed" during the increase.  The appointment went well.  He said that Reagan is still in the mid-range of the medication dose for her weight.  So she will stay at that level and we will plan another EEG prior to our next appointment next May.

Cole also had a good appointment and Dr. Lavenstein was happy to hear he wasn't having as many head aches.  I was a little surprised when he said, "so what else do you want to talk about?"  And then said the words I wasn't ready for, "I don't think he needs to come back unless he's having issues."  Wait, what?!  DISCHARGE?!  Didn't see that coming !  One less appointment?  I'll take it!  Although I still have to go and take him for Reagan's appointments, but it's nice to have one less appointment for him.

Cole also had an appointment with the orthodontist.  He has a tooth that he lost a few months ago that has nowhere to come in so I wanted to see if we need to do anything proactively to prevent it from coming in as a second row tooth.  Luckily she said we should wait until he loses the symmetrical one on the other side and see how that comes in first.  If it doesn't push the canine out then we will probably have to extract a tooth to make room and to prevent the teeth from moving more than necessary.  Ultimately it will mean brackets on the bottom to widen the space and he will need a palate expander on the top as well.

In addition to all this fun, I also had an appointment with a Developmental Pediatrician at Capital Area Pediatrics.  I completed a lot of paperwork about Cole's history and met to discuss my concerns.  It was a great appointment and I really felt that she understood our situation.  We have another appointment next week for her to meet Cole and do some testing.

As promised, I like to include funny quotes from the kids and haven't had any lately.  I have two for this update.

So we were in church last week and were reciting a prayer that includes "cast into Hell Satan."  Cole leaned over and whispered, "Mom, what makes you get sent to hell?"  I told him that any time you turn away from God by sinning that you are listening to Satan. He paused and said, "hey mom, I'm a little worried about my friend A from school because I think he is listening to Satan.  We better tell my teacher before it's too late!" So cute that he is worried about him!

One more.  So I was putting Cole to bed tonight.  As I often do, I gave him a kiss and told him I love him to the Moon and back. He looked at me and said, "Hey mom, that's only 4 days away.  The sun is much further, don't you think you should love me to the sun and back?" Can't argue with that logic !

Neurosurgery, Low Vision and a "Removable Visual Prosthetic"

Well it's that time of year!  It's not pumpkin spice and egg nog, but none the less part of the journey. Just a quick update after a few appointments.  After five days of head aches Cole is finally pain free.  We are watching him carefully and trying to increase his sleep and water intake. It's so hard to know when to be worried about a shunt malfunction, but we've been told if the pain doesn't go away that's probably a good sign we need to go to the ER.  So until then we continue to stock medicine and hope they don't come back.

We had a fun Halloween - one of those holidays that gets better as the kids get older. They were very excited about choosing a mean face pumpkin and going trick-or-treating. It is always tough with lots of kids running up and down steps in the dark. Cole had a few falls, but he always got up, picked up his candy and kept going. And of course he stopped at every door to ask about the dog and comment on decorations.  Such a sweet boy.  The both chose to be bats this year - one Batman and one Batgirl.  For those with a really good memory, you'll probably remember this costume (although much smaller) from when Reagan was three.  At least we can say she is consistent with her taste!  If you ask her why she loves it she will tell you it's not scratchy (like the witch costume) and it's comfortable and stretches.

We've had a busy week with appointments.  We met with the kids' neurosurgeon, Dr. Myseros, and as expected, he said everything looks good and he will see us back in a year.  He was happy to hear Reagan is still seizure free.  And he was especially happy to hear Cole's eye surgery went well.  He said he doesn't see a need for any follow up CT scans, but rather do them if we happen to have concern of a shunt scare.  There was one surprise I wasn't expecting.  Apparently some children with shunts have complications that result in the brain not growing correctly because an overactive shunt causes a vacuum effect which stunts the growth.  Luckily Cole's head circumference is following the growth chart correctly and given his age we are probably out of the woods for any concern with craniosynostosis.  I guess I'm happy I didn't know this was something we had to worry about...one less thing.

We also had an appointment with the low vision specialist, Dr. Mojollal.  And although I didn't have any specific expectations, the appointment was very informational.  Unfortunately Cole had a hard time with the eye exam.  He kept telling us he couldn't read the letters shown.  It's frustrating because you want to encourage him but it's sometimes hard to tell if he is just being difficult.  The end of the day, end of the week and he gets very tired.

I asked him about the contacts Dr. Hertle has suggested and he had a lot to share.  First, he was able to explain the benefit of contacts in a very clear way.  The most prominent benefit is for children who have congenital nystagmus.  When children are born with nystagmus the brain is used to the way the eyes work and the shaking is not unexpected.  When contacts are put on the eye, the eyelids immediately send biofeedback to the brain signaling that something is different and therefore developing a communication that was lost.  Second involves the refraction.  When light goes into the eye glass lens it refracts then refracts again before it gets to the eye. With contacts the light refracts only once since the contact is touching the eye ball.  The third benefit of contacts has to do with the nearsightedness.  Not everyone with nystagmus is nearsighted so it isn't a problem for everyone.  But in order to fix the nearsightedness in the eye glass text must get smaller.  And when it's smaller it's much harder for someone with nystagmus to see since everything is smeared all the time.  The contact lens fixes this problem.  Needless to say, I was very happy to hear about these benefits.

In addition to talking about contacts, we tried the monocular again.  Unfortunately Cole still struggles to align the lens on his eye to have it work.  So we've decided to table this for now.  He did mention a new technology that he would like us to try.  It is being marketed as a "removable visual prosthetic" called Nueyes.  They are glasses with a built in camera with up to 12x magnification.  But not just that.  The glasses also have OCR capability, or optical character recognition.  So if he was viewing a book it could read to him through an ear bud.  They are also fully voice enabled and have internet capabilities.  They also won an award at the Computer Electronics Show.  We have really been struggling with the CCTV at school because Cole can't seem to write without having his hand blocking the view of the paper.  We are hopeful he will continue to get better with more practice, but we are always looking at other options.  And although we are excited about this opportunity and look forward to trying it, it comes with a very hefty price.  The glasses are currently priced at over $6,000.  We will investigate the possibility of the Department of the Blind and Visually Impaired supporting this purchase, but not sure whether they will consider it.  We plan to at least go try them in the next few weeks when they arrive and see if he can benefit from them.

Next up?  Neurology next week...a little nervous about this one regarding the discussion of Reagan's medication levels.  We will wait and see what he says!

Celebration of a birthday on earth and in Heaven

Cole is finally six and couldn't be more excited.  He was lucky enough to celebrate his birthday for an entire week!  We had Pop and Nana over on his birthday, took him to Cheesecake Factory over the weekend (he loves cheesecake), had his party with his friends and cousins the next weekend and then celebrated with his Grandma and Grandpa after his party.

He decided he wanted a party at his Dojang (Tae Kwon Do School) and share his love for Tae Kwon Do with his friends and family.  Majest Martial Arts does a great job hosting parties and all the kids had so much fun.  They started with a demonstration for the kids to see how well trained black belts kick boards.  Then they took a class so they could all break a board themselves and learn some Tae Kwon Do moves.  They even asked mom and Cole's Uncle Pat to break boards and they did !

The kids also had free time to play on the moon bounce and take a ride in the Majest limousine.  And a party wouldn't be a party without pizza, fruit and a cake cutting with a Korean sword!  My sweet boy decided instead of asking friends to bring him gifts he would make donations to the Ronald McDonald House in Akron, OH.  We will be going back in December and plan to take the donated gift cards to deliver them personally.  We look forward to being able to help other families who will need to stay there.

As tradition continues, we chose to light a lantern in memory of our sweet Kendall Kaye.  Unfortunately the weather did not cooperate on her angelversary this year so we moved the celebration to the following weekend.  It's always a somewhat difficult evening, but it's also something the kids have started to look forward to. They don't ask as many tough questions anymore so that makes the evening a little more relaxing. The sting is not quite so difficult, but the loss is still an ache in your heart that never really heals. Reagan has started writing notes on the lantern now that she can write.  Cole did ask how the lantern actually gets into Heaven...and of course I had to break the news that it's not quite as easy as going up in the sky or I would have done it already :)  He is so curious and I love it.  The other day he asked where the heat comes from in the car.  When I told him it comes through the vents he said, "no, how does it actually get hot."  An explanation of coming through the vents was not sufficient. Luckily Johnny is very patient and does a much better job explaining things like that than I do.

Other than school and activities being busy, life was pretty uneventful until this week.  Cole is unfortunately suffering from three days of head aches. I'm trying to work through a good routine with the school to call when they think he needs medicine but not send him home just because he says it hurts.  It's a harder formula to develop than you'd think.  Unfortunately he vomited on his desk at school today and hasn't stopped telling me about it.  We are hopeful tomorrow will be free of pain for him.  The neurosurgeon does not think it's shunt related given the pain is not persistent, but we are, of course, monitoring him closely.  For the last three days the pain is on and off from about 8am until 2pm and then he seems fine after that.

We are headed into the tough Fall doctor schedule so there will be lots of updates coming.  Hopefully they will all be boring !!  Both kids will be seeing their neurosurgeon and neurologist.  Cole also has an appointment with the low vision specialist and Reagan has an appointment with the orthodontist. All in the next week and a half!  What was I thinking?!

Ophthalmology Follow Up and Update on Healing

We are just over a week after surgery and Cole is doing very well.  The blood has started to dissipate from his sclera (the white part) and the swelling has gone down almost completely.  He has done very well explaining his surgery to people he meets and was given an opportunity to share with his class on Monday morning.  We all continue to notice less shaking although we've also noticed his eyes seem to sometimes not align correctly. We are monitoring this and plan to talk to Dr. Hertle about it if it continues. This could mean that the muscles were not tightened correctly.

He had a follow up with his regular opthalmologist, Dr. Jeffries, on Monday, and she was very happy we had followed through with the surgery.  She said his eyes were healing as expected and saw no signs of infection.  She did a vision test and said he seemed slightly improved.  It was a somewhat disappointing appointment, however.  Although Dr. Hertle said we have a lot to look forward to with visual improvements up through the age of 15 years old, Dr. Jeffries said that over time the muscles will loosen and the shaking will increase again.  I've asked other nystagmus patients in the Nystagmus Facebook group about this and several said they have had this problem.  And so the roller coaster continues wanting to feel progress and hope and yet continually being reminded that the future is so unknown.  And so we continue down the road less traveled and pray that we are being led in the right direction.

Next on our journey is to consider contacts.  So I contacted Cole's optometrist, Robin Alexander at The Eye Center where we get his prescription filled to ask about contacts.  She has been AMAZING over the years helping us choose frames.  She said she wasn't familiar with having children as young as Cole getting contacts and although she can fill them, she had a lot of questions I couldn't answer.  We also will have no coverage for these since we will need to use the vision benefit for his frames.

I mentioned the challenge of having him fitted for contacts to the nurse when I made the follow up appointment with Dr. Hertle and she suggested scheduling an appointment with the optometrist at Akron Children's to have him measured for the contacts.  Given his eyes are still healing, he wouldn't be able to wear them yet anyway.  So we are scheduled to go back December 6th.  We don't want to tell the kids yet, but I plan to fly up with Cole.  Reagan is going to be very disappointed when she finds out Cole gets to fly on a plane.  Perhaps we will need to find a good excuse to take a trip somewhere!

Next up?  Cole is turning six!  Wow...

Nystagmus Surgery Trip Day 4 ~ Discharge, headed home and next steps!

WE ARE HOME!  It feels amazing to be back home as a family and in our own beds tonight.  It was a long week, but it really flew by quickly.  We woke up this morning at about 5:30am to Cole crying in pain.  The doctor suggested not waking him to give medication so it was expected that he would wake up with some irritation.  After getting more medication and a new cold compresses he settled down and went back to sleep.  Johnny and I, of course, were still pealing ourselves off the ceiling from not knowing what to expect from the crying.  More blood on the pillow?  A problem that needed a trip to the ER?  Of course we were briefed on all the possible complications and they were all running through our heads.  Luckily it was just "normal" pain and even better...we could fix it with medication!  Unfortunately it was much harder for us to fall back asleep.  Through all the medical issues we've been through the hardest parts are when there is nothing that can be done and you feel completely helpless in fixing the pain or problem.


We woke up in time to get to our appointment with Dr. Hertle at 8:45am.  We needed to wipe down our room, vacuum, put all the sheets and towels in the laundry and remove all trash.  We let Cole sleep until the last minute, made our donation for the accommodations, packed the car and headed to our appointment.  Luckily there was virtually no wait once we arrived in the office.  He wore a pair of sun glasses they gave him the previous day since he pupils would remain dilated for several days.  As soon as he walks outside he stops and covers his eyes - it is very painful for him.  Since he was able to open his eyes the nurse ran through simple tests having him look at letters on the screen again.  Although it was much harder than on the day of testing, he was able to answer with about the same size letters.  You could tell he got discouraged, but he worked really hard at trying to answer her questions.

Next Dr. Hertle came in and immediately engaged Cole and asked how he was doing.  He showed Cole an app on his phone to gauge the shaking in his eyes and the head tilt.  He said he sees a lot less shaking but there was still some head tilt.  He also said that he did 10 surgeries this week and statistically 1-2 of those will not be successful and may need to be repeated.  Unfortunately we may not know this until we have a follow up appointment with him and complete the testing again.  We may get some inkling if we don't see any decrease in the shaking, but he is hopeful that we will.  He has asked that we return for a visit in 2-6 months.  He said to expect the redness to continue for 6-8 weeks but the irritation should lessen significantly by the end of the weekend.  Cole is doing a great job telling everyone he meets that he had eye surgery...which is good, because the whites of his eyes are completely red right now. It really takes you off guard when you look at him and you have to double take.  I love that he feels comfortable enough to talk about it though because it will help him when he returns to school on Monday.

In addition to repeat testing, he has recommended the contacts for the reasons mentioned in yesterday's post.  He wrote a new prescription and suggested we get it filled immediately.  We have a regularly scheduled follow up with Cole's regular ophthalmologist on Monday so it's perfect timing.  He would also like us to consider giving him Baclofin.  He said we should wait 6-8 weeks so that we can get a clear idea of what progress we see with only surgery, but then adding the medication later.  He is about to publish an article that studies the progress of 85 patients after a combination of 1) surgery, 2) contacts, and 3) Baclofin. I've spoken with several patients with Nystagmus through a Facebook group who have chosen a combination of these so it is very interesting to learn this new information.  Our currently plan is to talk with Cole's ophthalmologist Monday and see if she concurs with these suggestions.  We plan to schedule a follow up appointment with Dr. Hertle in November or December and wait to consider medication until after that appointment and retesting.  Overall the appointment was very positive and he really gave us a lot of hope for with regards to Cole's long term prognosis.  He said that it isn't out of the realm of possibility that he may drive a car one day and he also said he sees no reason for Cole to learn Braille.  He said there is no harm in doing so, but that he expects him to be able to learn without it.

After our appointment we made a quick stop for breakfast since we let Cole sleep until just before his appointment then headed back to VA.  He was doing very well and we continued to give medication throughout the drive.  We had him all snuggled up in his blanket so he could rest.  We did stop for lunch and although he ate, he seems to get tired easily.  We headed to pick up Reagan from Nana and Pop's house in Leesburg and she was sad to leave.  She told us all about her visit there and showed us "her" room.  We were so blessed to have them watch her so she didn't have to miss school and so that we could focus on what Cole needed.  We headed home, unpacked, and went to pick up Shelby (our dog).  The kids were super excited to see her. So thankful our dog trainer and her Weimaraner kept her this week.  She has been wiped out since she got home!  Needless to say, we had a quick dinner, showers and the kids were in bed.

I will post an update after we meet with the ophthalmologist Monday.  I also created a short "before" video to try to capture the shaking and plan to take an "after" video so we can see the difference.  I will try posting those once he has healed enough to get a good video. Thanks again to everyone for their prayers!  We feel very blessed that surgery went smoothly and we are seeing some improvement already!

As I close my post from this week I feel compelled to share feelings from last night that I struggled to express then.  Hopefully I can express them now in a way that is understood by all and sensitive enough for those who can related. When we told Cole he was having surgery to help him see better he said, "I see just fine."  My purpose for this blog is not only for family and friends, it is for my children as they get older and for others who may travel this journey to feel less alone....less lost.  As I lay in bed with Cole last night I couldn't tell when he was awake or asleep because he didn't open his eyes.  He would lay still then all of a sudden say something when I thought he was sleeping.  He had no sight so he couldn't be entertained with TV or with his iPad.  We tried listening to the movie Cars, but it didn't hold his attention very long without the visuals.  I asked if he wanted to listen to music and he said no.  He listened as Johnny and I conversed asking many clarifying questions because he had no visual cues.  "Johnny, can you pass me another one."  Cole, "another what?"

Cole asked his dad to get him a Robin toy and dad came back with Batman too.  As I opened the package he asked which was which because he had no sight.  I ran his fingers over Robin's boots, over Batman's pointy ears and over the buttons down Robin's shirt.  I was so intrigued by the difference in my relationship with him by not having sight.  It completely changed our conversations.  In no way can I say that I understand the perspective of a blind child's parent, but for a very short period of time, I realized how drastically different that parent must be to help their child experience life. I catch myself pointing out sunsets or birds to Reagan and cringe when I realize Cole cannot share in these experiences.  Dolphins, boats, and rainbows.  I will ask if he can see something and he will say yes as he is looking out the wrong window.  I often wonder if he is embarrassed he can't see it?  Is he worried I will be disappointed? Obviously I wouldn't be but I find myself torn - do I avoid pointing things out that are so beautiful to prevent these feelings?  I share this tonight because I think it creates perspective for all of us.  And it makes me realize that instead of avoiding it, I should explain it in a way he can understand - as a parent would for a child who is blind.  Do we all do enough to describe the world to our children?  Authors do this all the time. That is what makes a good book hard to put down - when you FEEL what the character feels or SEE what the character sees.  Last night made me realize we really should do this with everything in life. It is just one more reminder that every experience brings new perspective....

Nystagmus Surgery Trip Day 3 ~ Akron Children's for Surgery

Well the big day is here and Cole was a champ...a true Ironman.  Although the plan was to sleep in, the construction crew woke me up at 5:30am and got Cole up by 6:30am.  We had an easy morning in the room and then ventured down to the family room and put in a movie and played with a few other boys who were staying here at the Ronald McDonald House.  I was very worried Cole would struggle not having food after midnight, but he only asked for a snack a few times and did very well without.  He insisted he wear his new jersey that we bought last night - seemed fitting since we call him The Cole Man.

We walked over to the hospital and arrived by 12pm and met with the nurse to take vitals.  Upon arrival everyone was very edgy about his cough.  The nurse and tech were very skeptical and said it would be up to the anesthesiologist whether surgery would move forward as planned.  Johnny and I both think he walked in to the room with a plan to cancel.  Luckily, though, he listened to Cole's lungs and had him cough and said he didn't see any problem with it.  We reviewed Cole's LONG history...AGAIN...and got him changed and ready to go.  I was prepared for the tears as he was escorted away by the nurse and Child Life Specialist, but as Johnny said, Cole was voted "ladies man" last year at school.  The look he gives her before they walk out is priceless.  He had to be reminded to give his mom and dad a kiss good-bye.  He was all smiles!

We walked out at about 1:07 PM and surgery lasted just about an hour.  We met with Dr. Hertle in a consult room after the surgery and he said everything went smoothly.  He said Cole's left eye looks pretty good considering...but that the right eye is not in very good shape.  Nothing we didn't know already, but he did confirm the ROP did no internal damage (only damage to the periphery where it is expected). He also said that he expects Cole to see progress in his vision up until the age of 15 years old.  That was really good news.  He thinks his vision is probably closer to 20:300 (improving from the 20:500 or 20:800 we've heard before).  He said that Cole has Periodic Alternating Nystagmus and therefore he recessed all four muscles during the surgery.  The testing showed that he looks at something straight on until his eyes get tired, then he tilts his head to the right to get a different null point until he tires and then tilts his head to the left for yet another null point.

We talked about the cause of his low vision and Dr. Hertle said all his limitations are not caused by the nystagmus.  He said the majority is due to the developmental disruption from premature birth.  Some is related to the bleed and pale optic nerves.  Again, nothing new but good to have confirmation from a second source.  Unfortunately that damage cannot be reverse and the vision will not be regained.  He did say there are medications we should consider and that contacts are very helpful for children with nystagmus.  We will talk more about these in the appointment tomorrow.  There is also a risk that about 20% of patients end up needing a second surgery...we will also ask that question tomorrow as far as when we will know.

We were taken back to see Cole about 15 minutes later and he was moaning as we walked into the recovery room.  He was unconsolable as he was coming out of anesthesia so they gave him more morphine.  He was still in a lot of pain and wouldn't open his eyes so it was hard to see if he was fully waking up.  I was able to get on the stretcher so he could lay on my chest but continued to moan until the meds finally kicked in and he fell asleep.  We let him sleep for about 30 minutes and then woke him up to get back to the Ronald McDonald House to rest.  Unfortunately he was still in a lot of pain.  We called for Security to drive us back to the house and filled his prescription before we left.  He moaned the entire way back to the house and rested on my chest once we got there.  Unfortunately his eyes are swollen, the whites are dark red, the pupils are very large and he was bleeding from his eyes.  He hasn't really opened his eyes and when he sits up he immediately grabs his head in pain.  So we're taking it easy relaxing in the room, ordered pizza and Cole convinced dad to go to the hospital gift shop and get him the super hero figure he wanted.  I redosed his Tylenol and later his hydrocodone and he seems to be feeling much better.  He and dad have been playing with Batman and Robin for the last half hour.  We meet with the doctor tomorrow at 9am and will then head back to VA.  More tomorrow night with next steps!

Nystagmus Surgery Trip Day 2 ~ Testing and Pre-Op

If I had to sum up today in one word it would be "exhausted."  Wow.

It was a long day but Cole was a champ and held it together until we walked out of the hospital.  We arrived at our appointment 15 minutes early as requested, at 9:45am.  We filled out some paperwork and were able to meet with the insurance coordinator.  There is quite a bit that we will need to cover, but we have no doubt it's worth the investment.  We waited about 40 minutes and were finally taken back to answer questions about history and symptoms.  The nurse performed the standard vision tests requiring Cole to look at images on a screen and she continued to decrease the size until he was unable to read them.

Dr. Hertle then came in and did similar tests and talked to cole for a little bit asking him questions and if he knew why he was there to meet him.  We was wonderful with Cole and answered all our questions.  It was a little heartbreaking to hear him say, "I don't need formal testing to see that he is struggling." Apparently he categorizes his nystagmus surgery into 9 different sub categories depending on the results from the intense testing.  After his initial exam he sent us off to see several different technicians to have those tests completed.

Just a reminder - you can click on any of the images to see them larger...

Eye Movement Recording (EMR)
The first test was an EMR.  This test is a high speed recording of the movement of the eye consisting of 500 pictures per second.  The recording documents the waveform characteristics, amplitude, direction and frequency of the eye movements.  The test diagnoses the type of nystagmus Cole has and determines the surgical approach.  Cole had to sit in a chair (on my lap) and I had to hold his head still.  He watched as images were displayed on a screen.  The images (Bert, Ernie, Dora) probably switched every 5 seconds and this continued for probably 10 minutes.  By the time this test was done it was almost noon and they gave us a $15 voucher and suggested we go get lunch and come back.

Color Differentiation
After lunch Cole's first test was to take about 12 different color dots and line them up in order.  Although this sounds easy, he had to match each color with the next closest color dot.  He also had to have a patch over one eye and then repeat the test moving the patch to the other eye. This was testing his ability to differentiate the colors which ranged from blue to orange.

The next test included another eye chart on the wall.  He had to look at two stacked dots and indicate which one of the two had lines in the circle. The lines were of differing clarity. The first test he was able to stand right next to the screen.  Then he had to sit across the room and repeat the test.  When he was close he was 100% accurate.  When he moved back he was not able to see even one accurately.

Visual Evoked Potential (VEP) Test
The last test was REALLY taxing for Cole.  The VEP is also painless and checks the function of the rods and cones.  It involves three electrodes placed on the back of the head, one on the forehead and a patch over one eye (and then the other).  He was asked to sit still, back against the chair and stare at a red dot on a screen while the background changed.  It would change from tiny yellow and black moving checkerboard changing into varying sizes.  Very mesmerizing and hard to explain.  He wasn't able to see the red dot so they hung a frog from a wire in front of the computer screen.

He had to stare at the frog until the screen went black.  I would say the timer was probably set to 30 seconds at a time and he probably did this for 30 minutes (15 minutes on each eye) including time to switch the patch.  By the end you could tell it was getting increasingly difficult and he kept leaning forward and tilting his head to see better.  The challenge was the machine had to read his eyes so if he looked away we had to start that test over again.  Keeping his attention on the frog (who never moved) was really hard.

Dilation
When we finally finished the VEP they dilated his eyes and we waited for the medication to take effect.  Then we were taken back in to see Dr. Hertle.  Unfortunately he said it's really hard to see into his pupils since the nystagmus causes him to move.  He said he will get a much better view once he is sedated.  He said that he definitely expects surgery to help Cole


The nurse called over to the Pre-OP department and let them know we were running late.  We finally wrapped up the testing at 2:45pm and ran across campus to meet with the surgical team.  There we were met by the Child Life Specialist who walked through all the tools Cole would be seeing the following day.  Explained the gown, the BP cuff, pulse ox and face mask.  He got to pick his flavor for the mask and picked pink lemonade AND orange.  We then met with a nurse practitioner, the surgical consultant and a technician.  Each spent some time getting history, getting diagnostics and height/weight etcetera.  We were SO nervous his cough was going to stop surgery, but after meeting with the team they said his lungs sounds good and his throat is clear so they don't see any reason anesthesia will not be safe.

Overall we had such an amazing team of professionals who met with us today. They all went above and beyond to really work with COLE to make sure he felt comfortable and had fun.  This last pic is the one that proves he had the biggest muscles in the room (as measured by the blood pressure cuff...which is really a muscle meter).  She was so much fun.

So after being at the hospital for 6 hours we headed to the car and decided to drive to find dinner since the choices in walking distance from the hospital were rather limited.  After a quick dinner and shopping trip for a new jersey for Cole, we headed back to the Ronald McDonald House to relax and gear up for surgery!  No food for Cole after midnight so it's going to be a LONG morning!  Arrival at the hospital at 12:15pm for a 1:30pm surgery time.  It's a go! Prayers can commence !  And thanks to all those at home who are helping watch over Reagan.  She's with nana and pop this week (Johnny's parents) and is having SO much fun!  

Nystagmus Surgery Trip Day 1 ~ Ronald McDonald House

After we put Reagan on the bus we finished up packing, did a little work and left VA by about 9:30am.  We decided to stop for breakfast at Bob Evans and then had a quick lunch on the way to Akron, OH at the Somerset stop on the Pennsylvania Turnpike.

It was a smooth drive and Cole stayed occupied with movies and games on his iPad.  We drove straight to the Ronald McDonald House to check in and get a tour of the house.  This house is VERY different from the one in Baltimore.  Although just like Baltimore, they are building a brand new facility directly behind the existing house.  So far everyone is super nice.  It's a much quieter house and not as many people, although it is fully booked this week.  The biggest benefit is that we can walk across the street to the hospital.  In 2014 this house served 12,872 individuals with 135 core volunteers each month.  They had 55 families who stayed over a month.  The families coming to this house were from 46 counties across Ohio, 23 different states and 8 countries.  So if you visit McDonald's this week please think about all these families who benefit from your support and put your extra change in the donation box.

After we got settled into our room and got a tour of the house we drove the car to the parking garage down the street and decided to walk into town for dinner.  As with many cities, there are areas with more activity and areas with less.  We found a few hip bars, but the dinner options were rather limited.  We were able to find a nice Irish restaurant, though, and had dinner.  On our walk back we decided to venture down by the lock system.  Although the Ohio & Erie Canal in Akron was abandoned in 1913 due to the increased popularity of the rail system, it still had much of its original facade in place.  The history said there were families living and working on these boats for 7 months of the year.  We talked about locking system, how it works, looked at the water fall and of course Cole had to throw some rocks in the water.

Then it was off to bed early for Cole so he's ready for tomorrow.  Unfortunately he has been up since about 3:50am when Reagan woke them both up, had them dressed, teeth brushed and beds made.  I woke to hearing their laughter and asked what was going on and Reagan said she was ready to go to Nana and Pop's house for her sleep over.  We asked them to go back to bed and I fell asleep only to wake to find them standing next to me at 5:30am asking if it was time yet.  Clearly they were excited (or nervous) about the adventure.

We are all looking forward to meeting Dr. Hertle tomorrow and learning more about what to expect on Thursday.  We asked Cole if he had any questions and he said he wanted to ask if there was a way to make the tools not hurt him.  Good question!  We told him yes but that we will be sure to cover that tomorrow.  We are hopeful that his cough doesn't preclude him from having surgery.  I brought him to the pediatrician Thursday and spoke with the surgical team at Akron Friday and everyone thought he would be fine.  I am still worried given we've had MRI's cancelled for Reagan due to a stuffy nose.  Any time someone has to be anesthetized there is a concern about the airway.  Luckily his throat is open and his lungs are clear.  The surgical team said as long as he doesn't have a fever we should be ok.  Praying they are right - we will find out tomorrow!