Sunday, June 10, 2018

Wait, what? She's NINE?!


The last year has truly flown by!  Reagan decided this year she didn't want to have a big party and decided to just have three friends over for her birthday for a sleep over.  The fun started with up-do's, make-up, nail polish and glitter at Sweet and Sassy for Ciara, Isabella, Shelsey and Maggie.  Then they got to pick a station to make something.  Most of the girls picked to make scented lotion and one made a bath bomb.  They smelled so good!  The salon did a great job and all the girls had fun.  Reagan has been begging to wear make-up and the salon for her birthday was a good day to be a princess for a day.  Then wipe it off and be my little girl again...this mom is NOT ready for make-up!

After the salon we went to an early dinner.  You guessed it - she wanted Otani's!  She absolutely loves the Japanese steakhouse and it is a must for her birthday every year.  She was even able to get one of her friends to try her California roll for the first time!  Luckily they know us there well so they always make it a special event.

After dinner we went back to the house and the girls decided to try a science experiment with the bath bomb kit I bought for them to make and take home.  Although they had fun, the activity ended quickly when the powder wasn't hard enough to stick together in the mold.  Not sure if they didn't measure the baking soda correctly or the water but we only got about four to work correctly.  That's why it's called an "experiment" right?!


After that they decided to go play in the basement for a while so I had time to get the cake and fondue fountain working.  I always forget what a huge hit the fountain is!  And what a mess it is LOL.  But totally worth it and the girls had fun dipping their strawberries, marshmallows, bananas and rice krispie treats.

Reagan chose a unicorn theme so she had a unicorn cake with her unicorn plates, napkins and decorations.  She is absolutely obsessed with unicorns!

After dessert the girls decided to get in PJs and watch a movie.  They decided on Descendents which is a Disney movie that is much like a  musical.  Overall the girls got along really well and had a lot of fun.  The following morning they rode bikes, took the dog for a walking then the girls went home so we could get to my parents' house to help them take down a monstrous tree that was infected by the Ash Bore.  It's killing all the Ash trees in Virginia.  Truly a horrible disease.  We had so much fun working together as a family to get the tree chopped down, limbs piled high and the larger pieces stacked into wood piles.  Although it doesn't look that big, it was a HUGE tree and took the 10 of us over 4 hours to clear it.  It was so fun working together - and I actually used the chain saw for the fist time!  Wow, I underestimated how hard that is to do!





Algonkian Tribe Championship, Lugnut awards and Season 2 of the Cascades Rapids!

Wow - what a weekend!  This weekend we wrapped up the Spring sports seasons and kicked off the Summer sports!  Reagan played for the Algonkian Tribe Girls 3/4 team this Spring and had a great time.  It was amazing to see the improvement in all the girls from the K-2 team she played on for the last two years.  Their ability to understand the game, starting to get some idea of a strategy and learning where they need to be on the field has really improved.  She has a lot more to learn, but she has found something she loves and we're excited she wants to stick with it.  After coming home with her Championship trophy today she announced that she'd like to play until she goes to college!

They finished the season 6 and 2 and went into post season last weekend.  They won last both play off games Saturday and Sunday which put them into a game Saturday then Sunday this weekend.  They were in the top bracket for the modified field teams (the A teams play full field, the B teams play a modified field). They played Burke yesterday and Alexandria today to win the Northern Virginia Youth Lacrosse League (NVYLL) Championship for the Girls 3/4 which placed them first out of 35 teams.  The team played hard and really found their groove.  She is excited about doing a clinic this summer in addition to possibly being able to play on a summer league (if we find enough girls to play).  She will definitely play Fall Box league in McLean.  Box lacrosse is slightly modified in that there are no out of bounds.  So the game is a little more intense but there are only games once a week with no practices. We will see how it goes!

We also had an end of year awards party for Cole's Dulles Little League Challenger team, the Lugnuts.  Cole really started to like T-Ball and was even trying to hit coach pitch.  He played once a week in a very laid back environment.  Everyone involved was really encouraging and we were surrounded by people who understand that every child is different and that each child is facing his or her own challenges.  It has been very hard to find activities that are a good fit for Cole so this was a good shift for us.  Time will tell whether he decides to play again next year, but it's so good for Cole to be in an environment where he gets positive support and encouragement.  It was really fun to see the smiles on all the kids faces as they ran, walked, or wheeled across home plate!

As we wrapped up lacrosse and t-ball we also kicked off the Summer swim team season.  Practices have run for two weeks but we have missed most of them due to weather, lacrosse practice or pool closures.  We look forward to the practices moving to mornings once school is out for the summer.  Just a few more days!  The exciting news is that Cole was in the lowest of three swim groups for the younger kids team last year, the Riptides, but qualified for the highest team this year!  They said if he is able to keep up at practices he could even move up to the Rapids in the next two weeks.  The biggest difference is that Riptides practice for 30 minutes each day while the Rapids practice for an hour.  That's a lot of laps!!  Re
gardless, he was able to swim across the pool without touching the bottom so he is able to swim at the developmental meets with Reagan this year.  This is so exciting!  And he is very excited.  The kids had their first meet this weekend which is called Time Trials.  This is run like a meet so the kids get used to what to do, but it's just our team.  It places the kids in certain lanes with other swimmers that are about their speed.  Our first pre-season meet is this Thursday!

There are many moments I marvel at how far our kids have come.  I was in tears as I saw Reagan swim 50 meters Saturday without being disqualified for any errors.  Last year she only swam one way across the pool (25 meters).  Now that she's 9 she has to swim down, flip and then swim back.  I was in awe at how amazing she looked.  The delays in the left side are a little less noticeable than last year and it's just the beginning of the season. And Cole made it all the way across without any disqualifying errors!  As I get a tear in my eye with pride, I also know both kids came in dead last in their age group.  Most people watching my kids have no idea that just being able to swim is a miracle.  Sometimes I feel like I share their story too often.  I worry people get tired of hearing about how hard they have it.  "They look just fine" they say.  But I want them to know so they don't think it's for a lack of trying.  These kids have such big hearts.  We have 265 kids on the Cascades Rapids swim team with 24 girls who swam free style in Reagan's age group Saturday and 13 who competed with Cole.  She can't rotate over her hand or even hold up one finger on her left hand.  He didn't walk until he was TWO and can't see across the pool.  And although I am proud of them, just as with Running with the Stars, t-ball, and lacrosse...I always wonder how different it would be if they didn't have to contend with so much.  And as I run up to give kisses and tell Reagan how great she did I see the look of disappointment on her face and she says, "mom, I was last."  My heart is broken that she is so sad. I work so hard to keep her from feeling discouraged.  I just wish she knew how amazing I think she is...and that not every child who has brain surgery to remove part of her brain ever walks or talks again.  And as much as I pray that one day both my children realize how truly blessed and amazing they are, I also pray that they remain modest, work hard and know that their dad and I are so proud of everything they do.  And I love that every step of the way Johnny is there to give those pep talks when they get discouraged and remind them never to give up.  And for that, I too am blessed...


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....