Sunday, June 10, 2018

Running with the Stars 5K

How did I miss this update?!  Both kids were excited to do their second season with Running with the Stars.  They ran twice a week after school for three months.  The coaches focused on stretching, good running techniques and encouraging them to be healthy!  As always the season ended with the Spring Running with the Stars 5K in Ashburn which I ran with them.  They had a lot of fun and I'm super proud of them both for finishing!  Time will tell if they decide to join again in the Fall.



Thursday, May 31, 2018

Another EEG and new mouth hardware for Reagan!

Well it's that time of year again so Reagan had her Spring EEG with a follow up appointment with
Dr. Lavenstein.  Each year she gets one night where she gets to stay up late with dad, going to Walmart or staying up late watching a movie.  Then she gets up with mom four hours later and we run to Dunkin Donuts.  It's become a Spring tradition that she actually looks forward to.  She knows the drill, knows what will be expected of her and she is probably the easiest patient they have there all day.  We are so blessed she understands what is being done and can follow instructions.

Those dedicated followers on our journey know that each Spring
we get our hopes up that perhaps the epileptic activity has slowed and we could consider taking Reagan off her seizure medications.  Unfortunately she continues to show significant spikes in her sleep deprived EEG which would be indicative of seizures if she wasn't medicated.  As high as 10-15 per minute even during sleep.

Our appointment with Dr. Lavenstein went well and as expected given these results.  He said she is looking great and doing well and we shouldn't be discouraged.  It's so hard not to, though.  Not only did he not want to take her off the meds, he increased them due to her weight gain from last year.  On the up side, he decided he only needs to see her yearly now.  One less drive to Fairfax!!  And so we stay the course and hold out hope that maybe next year we will be the magic year that her brain settles down.  But we are always thankful that her seizures CAN be controlled - we definitely don't take that for granted.


In other big news Reagan was fitted for her permanent pallet expander today.  With each stage of development you forget how awful it was for you and jump in blindly.  Well this is no different.  I had hardware on my teeth from age 8 to 16 and even then took a retainer away to college.  It's easy to know you're making the right decision, but hard when you know how awful it is when you're going through it.  She's in pain, can't swallow and will probably cry every night for a week when I have to turn the key.  Not looking forward to this phase, but we'll get through it like all the others.  I had to laugh that the EEG was a breeze but this was traumatic.  It's all about perspective and prior experience.  Luckily we know this tool will help her make room for the teeth still coming in and get us setup for braces.  They said to expect the expander for about 9 months.

It's amazing that it's JUNE!  Wow, no clue where the year went, but it will wrap up before we know it!  A few more posts before then since I'm a little behind....

Tuesday, April 3, 2018

Spring Break 2018 ~ Myrtle Beach, SC

South Carolina here we come!  We decided to take advantage of our timeshare for Spring Break this year and drove south.  We broke up the trip on the way down and got tickets to a Fayettville Marksmen hockey game.  We've had so much fun going to Hershey Bears games we knew the kids would have fun.  It was fun seeing the military influence on the town.  They even had a "puck shuck" where you could buy pucks to throw on the ice after the first period and try to get close to a target and win a jersey.  Front row seats made it easy for Cole to get engaged with the game and the crowd was a lot of fun!

We got down to our resort on Sunday and despite being a little chilly, we promised the pool and we held to our promise.  The pool water was a balmy 85 degrees so it was great while you were in the water....but getting out was pretty chilly!  It did warm up Wednesday and Thursday though and we got in a lot of pool and beach time.  It was fun because there were five pools right outside our building so you had your choice!  That included a waterfall the kids thought was really neat.  It landed in the lower pool and came out with such force that it pushed you in the water.  They were entertained with that for a long time!

We also visited Boardwalk on the Bay - it's a large shopping area with restaurants over a lake with bridges in the middle.  We ate at Margareta's for lunch where they had a two story pitcher that filled and then drained after the volcano.  We took the kids to a store called RideMakerz and let them pick out cars to build.  RideMakerz is just like Build-A-Bear but for cars.  You can pick the body, chassis, motor/no motor, upgraded tires, rims, and of course extra pipes and sticker kits.  It's fun because they let you screw the car together and if you want to run it like a pit crew at Nascar they have timers so you can race against time or the person next to you.

The resort had a lot of activities for the kids.  Cole decided to join the Ninja Warrior competition at the playground one morning.  I should have realized it was going to be timed and practiced ahead....lesson learned! But it was a fun for him to see how quickly he could run up the stairs, across the bridge, up the climbing wall, up the spiral stairs and come back down the slide.  It was harder than he expected but he still had a good time.

They also decided to try mining for gems and fossils!  It was a lot of fun sifting through the sand.  They got a bag and a pamphlet that explained all the gems and fossils.  And Reagan did a great job holding the sifter with two hands.  Amazing the little things that make me realize how far she has come!  They found huge Amethysts, shark teeth, ammolites, and sea lilies!  It was very entertaining and Cole has been carrying around his "mummy" gemstone for a week now and has decided to ask Grandpa to help him bore a hole in it to with his lapidary equipment so he can make a pendent just like the Egyptians did.

The resort also hosted an Easter egg hunt for the kids divided by age groups.  Luckily Reagan and Cole were in the same group.  It was small but the kids had fun.  Egg hunts are extremely challenging for Cole because kids are super quick to grab the eggs and it takes a little longer for his eyes to scan, find and pick up.  But we did it together and they both collected several.  They were able to turn them in at the end for a bag of candy.

On our last day we decided to get tickets to the Pirate Voyage.  After our experience at Dolly Parton's Dixie Stampede in Tennessee we figured it was worth checking out.  It was a lot of fun and the kids had a blast.  There were Pirates, mermaids, and sea lions!  Lots of acrobatics, dancing and singing.  We were able to get front row so it was a little easier for Cole to see.  They also had a lot of fire and skeleton costumes with the black light which were great for him.

The one resounding theme for our trip was Reagan with her lacrosse stick.  She took it to the pool, took it down to the ocean, and had it in the condo asking to throw her the ball.  It's fun seeing her excited about it this season.  Now that Winter is hopefully behind us and the snow is done the season should start full swing!  Now if only we can hold off the rain so they can have a few good practices before the next game!







Saturday, March 31, 2018

Skiing, Tubing, Luray Caverns and a visit to the Ophthalmologist !

Tomorrow is April and I haven't posted a single entry all year !  That means two things.  First, work has been insanely busy and second, the kids have been healthy and life has been normal!  The year hasn't been all work though.  We've had several fun adventures!

We started January with a ski trip to Wintergreen.  We had a great time and Johnny and I actually broke out our skis too! Neither of us had been skiing since before having children.  Little did we know our bindings were no longer serviceable....which meant new skis for both of us!  We had a great experience at Wintergreen with the adaptive program two years ago and decided to take the kids back again. Each of the kids had a team of three instructors!

It has been hard getting lessons in any of the adaptive programs since they fill up quickly.  We also found a program at Canaan Valley but they didn't have any availability all year when we called in January.  They recommended we contact them in November next year.  Unfortunately it was also a very short ski season this year.  The kids loved it though and we are looking forward to planning more trips next year.

We literally only had one snow of about 4" all winter so we needed to go to the mountains to find snow.  We also took advantage of the snow and took the kids tubing to Liberty.  It was insanely fast but everyone had a really good time.  Despite it being very cold, they worked up a sweat and wanted to take off their coats!

In addition to skiing and tubing, I took the kids with a few of my nieces and nephews to Luray Caverns.  I've been wanting to take the kids for a while but haven't had the opportunity.  It was a great experience and they were the perfect age for it.  I've been several times before but seeing the excitement on their faces was so fun.  Cole walked the entire tour with the guide asking as many questions as possible.  Also, the guide asked if anyone wanted to sing and my niece Jacquline sang Ave Maria.  It was absolutely beautiful!

In addition to all the fun, Cole had his six month appointment with the ophthalmologist. He was dilated at the previous appointment so it was a pretty straight forward visit.  Dr. Jeffries said she is very happy with the improvements from his eye surgery last year.  In previous appointments Cole was unable to read the eye chart from the chair and had to walk halfway to the monitor to start reading the letters.  Although the font still needs to be very large to read the letters, he is able to sit in the chair now.  Unfortunately she doesn't expect to see any additional improvements, but she also doesn't expect his vision to get worse.  She was also happy with his new bifocals.  Unfortunately, however, she felt the optometrist didn't make the bifocal part of the lens large enough and asked to have it increased when he gets new frames next year.

Next up is Reagan's EEG, appointment with the neurologist to review the results, and an appointment with the orthodontist to talk about a palette expander and braces.  But first, Spring Break!