I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Sunday, November 22, 2015

A Very Busy Weekend!

With everything Alex has had going on lately, it's about time she had a weekend of fun! 

Last weekend Alex started her weekend off with the Harvest Dance at her school.  It was for the entire school and it was Zach's first middle school party.  It was a 'drop off' party so unless you were a chaperone parents weren't invited, however, much to Zach's dismay, we stayed the entire time to be with Alex.  He may not have liked having us there, but she loved it and she loved dancing with her daddy!

Saturday morning we had to be up super early - 4AM early!  One of our most favorite past times is running with her friends with Inclusive Racing.  Last weekend was the Richmond marathon and for the third time, she was a competing runner!  Unfortunately we woke up at 4AM to her having a seizure so we were really worried about how she was going to handle the race, but thankfully she did just fine.  

Zach definitely gets the best brother award for getting up at the crack of dawn and doing it with a smile and zero complaining.

Alex had the best team.  Hampden Sydney baseball players - she was in her glory!!!

Josh (in the middle) ran with Alex two years ago and we were thrilled that he was back to run with her again with some friends.  

Bryan (on the end) who started Inclusive Racing is a Hampden-Syndey baseball alum.  These guys are amazing.  Truly hero's in our eyes.  The weekend of the race is the biggest football weekend for Hampden-Sydney and yet these guys chose to give up their Friday night and Saturday morning so that my daughter can have an incredible experience.  I am always in awe of people who give so freely of their time and energy to be a blessing to others. 

To see Alex so happy because of other people's kindness touches my heart in a way I simply cannot articulate. 

5:15AM - cold, but ready to get our race on! 

Typically an Inclusive Racing team is made up of four runners - one to push, two to guard each side of the running stroller and one to run in front of the stroller - Alex had EIGHT baseball players on her team!  She had her own entourage and it was great to see such a sea of blue Inclusive Racing shirts heading to the starting line!

She got lots of special attention and enjoyed every minute of it!

Here she is grinning with all of "her boys" as they line up at the starting line!

...and they're off!!

Last year we ran the half marathon but because of her back issues we only did the 8K this year.  It was a beautiful morning in Richmond as Aaron, Zach and I walked to the finish line.
Here she comes getting ready to cross the finish line - the FIRST Inclusive Racing Team to cross the finish line I might add!!

And here's the victorious team after they received their medals :) 

I really don't have adequate words to describe my feelings for these incredible young men.  

The smile on Alexandra's face with her medal says it all.  I said it in an e-mail to the boy's baseball coach, but with all of the sadness and tragedy's of late, it is so good to be able to witness the love and sacrifice of others still surrounding us.  These boys were the wings beneath her chair and they gave Aaron and I such a gift.

Seeing her so happy is one of the things that has us coming back year after year.

...and a post hug from her biggest fan - Zach.

Thank you to Inclusive Racing, to Bryan, to Alex's Hampden-Sydney "boys" for another incredible race.  A few said they want to come back and race with Alex again next year - I certainly plan to hold them to it!

When we got home from the race I put Alex down for a nap but there was no time for me to rest, I had a dance to get ready for!  One of our other most favorite groups is Jacob's Chance.  Jacob's Chance provides Alex the opportunity to play basketball, flag football, tennis, baseball and soccer and also provides her with great social activities.  It is an incredible group and I am so proud and honored to be on their Executive Board.  If you would have told me three years ago that Alex was going to be playing flag football I would have told you that you were out of your mind.  But she does.  And she LOVES it!!!  Last year was our first year playing flag football so when the season was wrapping up I asked when the homecoming dance was.  To date there had been no homecoming so I remedied that situation and planned An Evening Of Stars dance for the kids and it was a great success.  We opted to have the second annual dance and this year we planned a Mardi Gras themed party for the kids.  

The hall went from looking like this:

To our own little version of Bourbon Street :)

We had about 100 people and again, it was such a great night for all of the kids.

The kids get all dressed up in their suits and dresses and look so good!  Alex was tired, but she had such a good time.

I had a few things to give out on the dance floor and as usual, Alex had a great time dancing with her Daddy!

Thanks to some great volunteers from VACO, Ms. Jenny and Ms. Chelsea were on hand for some face painting.

A big thank you to Chelsea to for baking and decorating over 100 beautiful Mardi Gras themed cupcakes!!

A HUGE thank you to my great friend Leslie for volunteering her time to help me decorate and plan the dance.  I definitely could not have pulled the night off without you.  Thank you for being such a great friend and for having such a beautiful heart for these kids.  You make a difference by being you and I'm grateful for your friendship!

I would say despite waking up in a full seizure and being on the go at 4AM, a certain little girl had a pretty good time!

A big thank you also to my friend Kate for your tireless efforts to grow Jacob's Chance to include more and more programs to enrich the lives of our kids and for supporting the dance.  I cannot wait to see the center become a reality in the next few years!!

And a final thank you to her teacher Ms. Hadji for coming to the dance with her son and spending her Saturday night with us!

Between Inclusive Racing, Jacob's Chance and We Heart Harlie and Friends we are blessed BEYOND measure.  I have no idea where we would be without these great organizations helping Aaron and I give Alex the very best possible life she can have and the beautiful friendships we have made because of each and every one of their visions.   

Thursday, November 5, 2015

Another EMU Stay

Last week we had another visit to the Epilepsy Monitoring Unit.  This stay was 5 days, our longest so far (and hopefully ever!).  The main goal of the stay was to successfully get Alex off the Valproic Acid she has been on for years as it was beginning to elevate her liver enzymes.  Her seizures had amped up the last few weeks and she has also been having a lot of episodes at night that have her waking up screaming - almost like night terrors.  We are still on seizure meds but she came off the Valproic beautifully.  We were also able to capture the night terrors which are basically seizures building up and intensifying but before they peak, she senses it and wakes up screaming which actually prevents her from seizing.  Most people who have seizures get an "aura" like a certain taste or smell before the seize, the night terrors are Alex's aura.  The brain is a crazy thing!
I love this picture of Alex and Aaron - she has so much love and complete trust for him.  He's such a hands on Dad and it's times like this that he can keep her comforted and calm that truly make me fall in love with him all over again.

I will say keeping her head wrapped like this for 5 days was no easy task.

Actually, it was more like nailing jello to a tree - and she thought it was super funny too!
At one point they put a hat like this on her head.
I said she looked like a Smurf, my mom said she looked like a Hershey Kiss...I put it on Facebook and we got some other good ones too...warrior princess, cup cake frosting, Dairy Queen vanilla cone and a Tibetan Monk :)
Yeah, that one didn't last more than an hour. At least Daddy had some fun with it :)
Alex has been on the Valproic Acid for more than 10 years and I really do feel like she is more focused off this medicine.  For the first time ever she was completely engaged with her I-pad for more than 2 hours watching PBS cartoons.
I am so thankful for all of my friends - and even those that I don't know who pitched in last week and really supported us.  While it wasn't a major surgery it was a stressful time and it sucked to be separated as a family.  Between the visits, calls, texts, food, and goody bags I was completely overwhelmed with everyone's generosity.  I wish I would have taken pictures of everyone who visited with us, and I'm sorry I didn't.  I did get a picture of the cool poster my friend Jennifer made to brighten up her room that people were signing ;)
Being silly with Ms. Kate

Loving all the attention from her brother...
Finally, I have to give a huge shout out and heartfelt thank you to my friend Lynda.  Lynda is the founder of the organization that Alex is a part of called We Hear Harlie and Friends.  Lynda's mission is to offset the financial strain of having a medically fragile child but she does so much more than that too, she spreads awareness, she spreads kindness and joy.  I didn't leave the hospital the whole time Alex was there and every time Lynda came to visit she had food, care packages and lots of big hugs for me. This has been a very trying and emotional time for us with her recent diagnosis, an oral surgery (which was the week before), this week long stay and a potential spinal surgery on the horizon.  To know you are truly cared and thought about during those times is priceless.  She is trying to make the world a better place a little bit at a time.  We all need a Lynda in our life! 

Lynda snuggling with Alex during one of her visits.

I am so thankful that Alex had such great spirits the whole time we were there - 5 days of me in her face with all of those leads glued on (and everyone messing with her to re-glue them a few times a day), laying in the same spot without seeing the light of day and she was still smiling.  I can tell you we were all very excited to get outside and head home.

I'll end with two of my favorite pictures from the week (like we were on vacation or something!)

Tomorrow's a really big day - we go get her new wheelchair in the morning and then we go for her back x-rays and find out if her curve has progressed and if surgery will be required.  Extra prayers are more than welcome!!!