Ophthalmology and FAST MRI

Ok, getting around to the medical updates now.  Cole had his bi-annual eye appointment with the ophthalmologist, Dr. Jeffries.  Unfortunately it was that time again so Cole needed to be dilated.  I remember having to hold him down as a baby and feeling so bad because I knew he was scared and it stung.  What I didn't know back then is that it really wouldn't get easier.  He was so upset when he found out he needed the drops that I need two nurses to help me hold him down while the drops were applied.  And yes, tried the verbal approach first.  He wasn't having it.

Other than that, his appointment went very well and as expected.  I did ask whether any new research is suggesting any additional treatments in the future.  I've been trying to follow what's happening with optic nerve regeneration but they haven't started doing any pediatric trials yet.  Unfortunately she said it is unlikely that would help him since the communication with the brain would still be impacted.  Although discouraging, I continue to have faith that new technologies will become available. She recommended we ask his neurosurgeon or neurologist so we will do that at our next appointment. Cole has become much more verbal about what he can see and how his world looks.  Although I still don't think I fully appreciate what he explains, we are getting more insight.  For example, he said he always sees one and a half of me.  I look forward to better understanding his world...I have been told that nothing in his world is focused so that puts a lot in perspective.  And honestly, it makes the work he does at school so much more impressive to me!

Although his prescription didn't change, I wanted to use our annual allocation for lenses and we ordered new glasses.  Unless you have a child with a vision impairment you have NO idea how hard it is to find frames that work.  Although I'm sure it's hard regardless, it's much harder when the lenses are so thick and you need space to fit the bifocals.  Just when I find one I think looks great, he says he hates it.  And it doesn't help that we always go after school when he's the most tired.  Anyway, it will be nice having a back up pair!  We are constantly searching for his lost glasses.

In addition to ophthalmology, Cole's neurosurgeon asked us to have an MRI before our next appointment.  We are SO lucky to have the FAST MRI at INOVA Loudoun now.  You have NO idea how amazing this is!  It used to take HOURS to get to DC, wait for the scan, do the scan, and drive back.  It was easily half of a day.  The new FAST MRI machine at INOVA Loudoun was able to complete his scan in THREE MINUTES!  The techs there were absolutely amazing with Cole.  They really got down to his level and connected with him in a way that help reduce his anxiety over what he needed to do.

When he thinks a lot (or is lying) his nystagmus gets much more exaggerated.  I was able to be in the room with him and holding his foot and talking to him.  I could see his eyes going absolutely crazy.  It is a bit bizarre because the noises are like loud banging but they are completely random and sound like they are coming from different places within the machine.  Almost as if pieces of the machine have broken loose.  We haven't had brain imaging since 2013 so it will be interesting to see if Dr. Myseros still thinks his ventricles are "teeny tiny" or if they have gotten larger.  Unfortunately we have to wait until our appointment in November to talk about how the scan looks.  But as we know, if he isn't showing signs of a shunt malfunction we assume everything is working smoothly.

Next up is his big #8 birthday! Then his appointment with the pediatrician and finally the neurosurgeon with a surprise getaway trip for the kids in-between!!  I can't wait to see their faces when we surprise them!

All Geared Up for Back to School, Box Lacrosse and Soccer!

Summer has ended and therefore school must begin.  The kids are in 2nd and 4th this year at Potowmack Elementary School and although they aren't very excited about school, they do like their teachers and are glad to be reunited with their friends.

Reagan has Ms. Stanford this year and went into Open House not knowing any other friends in her class.  Luckily she found a few she knows and has even made some new friends. Fourth grade is proving to be MUCH harder than third grade.  She continues to have daily word study (spelling) and math work sheets.  They are reviewing addition, subtraction, rounding and multiplication.  The big difference is the complexity of the social studies tests and level of content detail and testing strategies.  She has been having weekly tests and we're studying nightly for those.

Reagan also decided to join a group at school called Battle of the Books!  I was excited she was willing to try it.  This is a group of 4th graders and a group of 5th graders who read books throughout the year and then have a "battle" to see who knows the most about the books they read.  It's a great way to get her more interested in reading and so far it's working!  She finished her first book, Shelby Holmes and just started on her second which is due by the end of the month.

Cole is really enjoying second grade.  He's finding the work and schedule to be very similar.  One big difference is that he has stayed on the green behavior chart or gone up to blue or purple every day for the first month of school!  This behavior report is great news that shows he is maturing and ready to learn.  We did start him on a long acting medication to help with his focus and attention.  It's amazing how much it is helping him to complete tasks and even focus on homework after school. He now has daily word study and math worksheets.  I feel blessed there are medications that are able to help him.  We also hope they will help with some of the issues on the bus related to overstimulation.

Outside of school Reagan decided to try Fall box lacrosse this year in addition to a weekly lacrosse clinic.  She has really become more focused on the game and having a lot of fun with the girls on the team.  Her dad is also helping to coach the Fall box league and she loves having him right there on the sidelines.  Fall box is a little different because there are literally no out of bounds.  They "box" in the field which keeps the play going much longer. It's also on turf which is a very different game than the grass clumps she's used to.  The ball definitely travels faster!  She's having fun and despite having to play several games in the pouring rain she really looks forward to the games!  That's a good sign if you ask me.

Cole asked if he could do soccer this Fall and started at Dulles Sportsplex two weeks ago.  He hasn't tried soccer since he was four years old but thought he wanted to try it again.  Although it's not in his nature to be aggressive and go after the ball, he's having fun and keep up with the class pretty well.  Although it is very challenging to track with the ball and where the game is moving, it is great exercise and he says he's having fun!

Summer, Done. Wait, what?!

Wow, I'm such a slacker!  I haven't posted since the end of school in June!  No, I take that back.  I'm not a slacker, but rather living life and enjoying time with family.  We really did have a fun filled summer. Most of my contracts for work where slowing down and ended in early August.  We had my niece, Allison living with us most of the summer to watch the kids while I worked...but since I didn't have a busy work schedule we had a great summer of fun. She was part of the family, had her own room and stayed during the week and she was my partner in crime on all these adventures!  And most notably is the fact that we went all summer without a hospitalization or doctor's appointment!

We were jam packed with the usual activities like the Cascades Rapids Swim team.  Both kids participated and worked really hard.  Practice was every week day at 8am for Cole for 30 minutes and at 8:30am for Reagan for a full hour.  They had swim meets every Wednesday from 5:30pm until about 8pm.  They both poured their hearts into it and although they weren't the fastest swimmers, they learned a lot about not giving up.  It's a great activity and so good for both of them.  I'm hoping to convince them to do it again next summer!

Cole also participated in the Extended School Year (ESY) program again this summer and received braille instruction twice weekly for 45 minutes during the month of July.  Although he dreaded having to go, he always left smiling and we feel strongly that it helps him keep up his skills which make going back in the Fall so much easier.

One of our first trips was to the Natural Bridge Zoo down in the Shenandoah Valley area.  It was a really nice zoo with a lot of different animals.  The most important of which was an elephant named Beautiful.  Not only did we all get to ride her, Cole was able to go into her pen for a close encounter to feel how tough her skin was and how rubbery her tail was.  It was a great experience and I highly recommend making the drive down there.

We also went tubing down the Shenandoah River with my niece and nephew, Jacqueline and Robert. Although it sounds like a very relaxing float down river, it was actually really hard to stay together and keep up with Cole and Reagan and not feel like we were going to lose them.  Absolutely worth the trip, but I will bring rope next time so we can tie the tubes together to stay at the same speed.  After tubing we went with my sister and her family to the fire works on July 3rd in Lovettsville.  It was really nice to watch good fireworks without a lot of crowds!  They did a really nice job.  Cole even played kick ball with a family who was playing before the fire works started.  He was voted "most valuable player" by both teams !

Another fun adventure was a Washington DC Duck Tour - an amphibious boat from WWII that took us through DC and into the Potomac River.  The Australian guide knew more about my home town than I've known in a lifetime.  He was super knowledgeable and made the trip very fun.  He gave Cole the nickname "Mr Trivia" for answering a lot of the questions correctly including the name of a US National Monument off the coast of China called Mariana's Trench!  Who knew?! We also walked up to the Capitol and around Union Station.  I was hoping to visit more of DC but it was super hot and the kids were pretty worn out after walking the steps at the Capitol.  There will be more days to DC I'm sure!

We also took the obligatory trip to Cunningham Falls State Park.  I absolutely love that we have a lake and beach like this so close to home.  With just a little over an hour you can be sitting with toes in the sand, relaxing and watching the kids swim, soaking in the rays of sun.  This year we took a friend of Reagan's Julia and met my friend Tara and her daughters Maggie and Kate.  It's an absolute must for us every summer.  Unfortunately we didn't get there as many times as I'd have liked, but there's alway next year !!

We also snuck away for an overnight trip to Ocean City MD with my sister Michelle and niece and nephew, Jacqueline and Robert.  It was a fun little get away and the weather was really nice.  We had a relaxing day at the beach followed by a fun night on the board walk.  The kids rode a few rides and did some shopping.  And of course we did lots of shopping all along the main strip.  OC MD is still one of my favorites and another must-do for me in the summer.  The kids even let us have a telescope photographer do a photoshoot.  I had no idea she would take so much time, but she got a lot of fun pictures and the kids will have fun looking back at them!

We also snuck away for a week in the Kill Devil Hills with Johnny's family.  Despite being very rainy most of the week, it was so nice to get away from home and spend time with family.  The house was beautiful and right on the beach with a pool in the backyard.  Absolutely perfect for watching the sunrise, going for a quick swim in the ocean, and searching for crabs on the beach at night with flash lights.  Reagan had a lot of fun flying kites again this year and was super excited that I let her get corn rows in her hair.  That was a first for her and a big hit.  Both kids also convinced us to let them get hermit crabs.  It's now October and they are still alive, don't leave their cages and don't eat much, so it appears to be a win-win.  The big question is how long will they live...they've made it about 2 months longer than I expected!

A new addition to our summer adventures this year was roller skating.  We hadn't been in probably two years and wow did that time change a lot !  We went once to the Bush Tabernacle in Purcellville and my kids were hooked.  My niece basically grew up on skates since my sister managed the skating rink for most of Allison's childhood.  She was a huge help teaching the kids to skate and they loved watching how easy she makes it look!  They both did really well and begged to get roller skates!  We also visited the roller rink in Manassas and tried to go back to Busch but it was closed.  More to come with skating I'm sure since Cole begged me to have his 8th birthday party at the skating rink!

And as if that wasn't enough fun, we finished the summer with a trip to Hershey Park.  Another must-do in my opinion.  I absolutely love it there and so do the kids.  It was our first trip to Hershey where I felt the kids truly made it all day without any melt downs.  It's so interesting to watch them grow up - one day you just realize, wow, that wasn't hard and was actually a lot of fun :)  It is fun being able to do more with them and not have them get worn out so easily.  And Reagan was excited because I let her get her first henna tattoo.  It was a dolphin on her ankle and she thought she was oh so cool.  It's the little things right?  We also stopped to watch the dolphin show and had a close encounter with the dolphin where the kids could feed one.  It was a great experience and we learned a lot.

It was super hard to send Allison back to Westminster College, but we know that's what is in her plan.  It was hard to see her go and Reagan and I were both pretty teary eyed.  It was hard to believe the summer fly by so quickly.  We are excited about having her come back next summer and are counting down the days!  We will start our adventure fun list at Christmas break!  Who knows where the fun will take us!