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, March 30, 2014

Monument Avenue 10K

Alex participated in her second race thanks to Inclusive Racing yesterday!  Just like the Richmond Marathon 8K she did in November, the weather was less than desirable, but even though it was raining you could definitely not dampen anyone's spirits!

  A HUGE, HUGE thank you to Team Alex - Cassie, Rob and Tommy. 

It's pretty humbling to me to have people volunteer their time and energy to make a difference in someone else's life.  Running is competitive, everyone is always trying to better their time and to have people forego that just to make someone else happy is a pretty fantastic character trait in my book.  I can say thank you a million times to the Team but it never seems to be enough. 

Considering Alex does not like to sit still for any length of time, she was pretty content for the most part and patiently waited for the race to start. 

Once we headed off to the course she gave a little sampling of her happy squeals and according to the team she really got into in around mile 2!

 A few last pictures before she headed off to run in Wave E!
We covered her legs and feet with a poncho to try and keep her as dry as possible but she kept finding ways to uncover her feet - the last race her feet were so wet and cold it literally took 2 days for her feet to warm up!

 Once she was off we hung around the starting line for a little bit watching all of the runners - I think there were 38,000 people registered for the race. 

And Zach was being quite silly!

Rob called me when the team was less than a mile out so we would be ready to watch them cross the finish line - I had my phone in my hand but didn't hear it or feel it vibrate for some reason.  I was super impressed that not only did he leave me a voice mail, he also texted me! Luckily I looked at my phone only a minute or two later. 
Team Alex finished the race in and impressive 54 minutes, despite Alex wanting to play the let me take my sneaker off as many times as I can before they leave it off game - so much for trying to keep her feet covered!

Warning - if you watch the video - you  may want to turn the volume down on your speakers - I was just a little excited and yelled a little too loud :)

Crossing the finish line!


A race well run!
 This happy face says it all :) 

What a GREAT Team!

 Alex and Tommy - Notice the missing sneaker :) 

A little post race pep talk from Ms. Sarah
A very big thank you to Sarah because she is the one who introduced us to Inclusive Racing.

As soon as the race was over the rain started to get heavier so we didn't stick around for any of the fun festivities that were going on.  One little girl was wet and very tired!

We had a little bit of hike to get back to the car so by the time we got there Zach was a little less than thrilled by how wet he was :)

But as usual, he was a trooper and super supportive!
I don't think we were home 10 minutes before she was changed and completely passed out - running is exhausting :)  

 There is NO better feeling than waking up today and seeing her name in the newspaper again.


I'm just going to steal what I wrote in my last blog post about how I felt when I saw her name in the paper because the sentiment is still exactly the same:
"Alexandra Hayes.  Not Inclusive Racing, not Team Alex, just Alexandra Hayes.  And while I wouldn't have minded if it was listed like that at all because it was such an incredible day, for a moment in time she gets to be in all her glory as just Alexandra Hayes.  For all the people reading the results on Sunday morning all they think is, cool, some girl between the age of 10 and 14 named Alexandra Hayes ran an 8K.  Good for her.  No mention of a disability, no mention of a wheel chair, no pictures of her braces or the stroller, just Alexandra Hayes.  A simple name with some numbers, but such a huge story behind it.  And something so taken for granted, means so, so much to me." 
SO THANK YOU INCLUSIVE RACING AND THANK YOU TEAM ALEX - ROB, TOMMY AND CASSIE - our day would have been nothing without all of you and your hard work - and we are grateful!

Wednesday, March 26, 2014

We Heart Harlie And Friends

I have blogged about my friend Christy and her daughter Harlie a few times before.  Harlie travels to Boston for her medical needs and as you can imagine, that is not a cheap alternative for Harlie's family.  But without a full standing, functioning Children's Hospital here in Richmond, they have to do what they have to do for the best possible care for Harlie and her extraordinary and complex medical needs.  Three years ago our friend Lynda Reider created an event called We Heart Harlie to help offset some of the costs associated with going to Boston.  Lynda pulled the event off in just 28 days!  Last year the event was even bigger, t-shirts were sold and We Heart Harlie quickly became a recognizable brand here in the West End of Richmond.  This year Lynda actually turned We Heart Harlie into We Heart Harlie and Friends which included 3 more girls, including Alex!   Please visit www.weheartharlieandfriends.org and get to know Harlie, Eden and Ella and learn more about the foundation.   In addition, Lynda has worked tirelessly to turn We Heart Harlie and Friends into an actual Foundation and she achieved that goal two weeks ago.  Her mission statement needs no further words or explanation: 
The mission of We Heart Harlie and Friends is to offset the financial needs of families with medically fragile children.
We are a *charitable non profit foundation with the goal of changing children’s lives and making their world a better place.  The foundation has begun the process of applying for tax exempt status under Section 501(c)(3).

If you are in town, mark your calendars for May 3rd and come support four amazing little girls!
If you have seen all the great We Heart Harlie T-shirts around town and on Facebook, now's your chance to order your very own!  If you live out of town and still want to help, consider a We Heart Harlie and Friends T-shirt too!  And if you, or someone you know, would be interested in donating a product or service for the raffle that would be really cool too!  This year there are a few fun colors to choose from:

To order (or register for the Fun Run or 5K), go to http://weheartharlieandfriends.org/, click on race registration, We Heart Harlie 5K & Fun Run, Register Online - Fill out Page 1 and Select Phantom Runner, Page 2 has the styles of the shirts for you to pick from.

 If you are wondering where the hearts came from - the girls made their own hearts.  Alex had help from Lynda's girls Jessica and Samantha:

Alex was very involved and engaged in the whole creative process of her heart!  AND I found this COMPLETELY ironic - she actually gave it her seal of approval...she DROOLED on the paper and the drool is in the shape of a HEART!  Can't make that up!

Lynda is proof that one person can make a difference.  She saw a need, had a vision and is now a foundation helping additional families.  It's really taken on a life of its own and is an amazing story and I'm so grateful for her and her friendship.
So what are you waiting for....go visit www.weheartharlieandfriends.org!  We can't wait to see everyone on May 3rd!! 


Tuesday, March 25, 2014

Did You Know...?

...that in 2011 the mayor of Lewiston, New York gave Alex a key to the city and signed a proclamation and declared March 19th Alexandra Elizabeth Hayes Day? 

So, naturally, we celebrate Alex Day on March 19th! :)

Zach and I made her poster this year - unfortunately Daddy had to work and couldn't take part in our festivities.

We made brownies and had some cupcakes too :)  
Alex and Tammy

The best little brother ever

She couldn't stop laughing at me...she was happy with Alex Day :)

Thrilled to have friends to celebrate with :)  My friend Lynda's girls Jessica and Samantha

My friends Lynda and Mesa - it was all still just too funny!

Alex was super excited about the brownies.  Whenever we asked her if she wanted a cupcake she squinted her eyes tight to say "no!" - but when we asked if she wanted a brownie, those eyebrows shot up over and over again.  At one point when the brownies were in the oven she lifted her head and turned it as far towards the oven as she could and when I mentioned the word brownie she would whip her head towards me to look for it.  She's so funny sometimes.

I don't think she was disappointed!

My sweet, sweet Zach - who despite wanting to know when there could be a special Zach Day, he goes with the flow and is fine with his sister getting some extra attention.  He smiles, contributes and is happy for her and does what he can to participate to make her happy.  Truly my joy.

Tuesday, March 18, 2014

Fingers Crossed!

So my blog is about the good, the bad and the ugly.  Unfortunately, this is an 'ugly' post!  Ever since Alex was a baby she has had issues with constipation.  Believe me when I say that we have tried everything to help her in that department.  We've given her regimens of flax seed, Metamucil, wheat germ, magnesium, pro-biotic, Karo Syrup, added Activia to her breakfast, we've always completely avoided any binding foods such as bananas and rice.  We've given her over the counter remedies, we've taken her to GI specialists and have given her prescriptions.  We've taken her to chiropractors to help things move along, you name it - we've done it.  Despite all of our efforts, we are constantly having to either give her suppositories or enemas to help her and get her comfortable.  With all of the other challenges Alex faces it pains me to no end to see her in so much discomfort on top of everything else.  It seems like such an insult to injury that even "THAT" doesn't come easy for her.   Over the years we have had to 'assist' her on more occasions a month than I'd like to count.  Over the last few weeks things had gotten pretty out of hand and we were having to give her enemas twice, sometimes three times a week - she wasn't going unless she had that kind of assistance.  She gets very manic when she gets 'backed up' and it's a lot of biting and hair pulling.  No fun for anyone involved.  Last week I took her to see a new GI doctor and I was really impressed with him.  Not only did he ask a lot of questions to try and get the bigger picture of Alex, he took a lot of time with us and pointed out what he was explaining to me on diagrams.  In the past, doctors have always prescribed things such as Miralax, or other laxatives.  Miralax, on a side note, is not an option for us anymore.  The FDA has confirmed that Miralax has metals in it.  Alex's body cannot absorb metals and she has adverse reactions - like seizures - not an option.  I was so relieved when the doctor wasn't dismissive with my concerns and didn't just try to write us a script and send us on our way.  Quite the contrary he actually said laxatives are not going to solve Alex's problems.  I can now eloquently describe how the colon works, but I'll save the commentary and just say that she needs help in the motility department.  Alex has low muscle tone - much as it affects the muscles in her arms, legs and other extremities, her internal muscles are low and weak as well and they don't function the same way yours and mine do.  So....after he sent her for an x-ray and despite having and enema the night before, the x-ray determined she had significant amounts remaining and he prescribed citrate of magnesia to clean her system out.  Unfortunately for Tammy, she got the brunt of that job and after 10 diapers, she deserved major hazard pay.  Now that she's cleaned out, the Dr. has prescribed Senna, an herbal product, which she gets 5ml's of at bedtime and that is paired with 10 ml's of Colace each morning.  There are some long term issues she's going to have since this has been a problem for so long, but since Friday I am happy to report things have continued to 'move' in the right direction and for the first time in forever, she's comfortable and we seem to have found a working solution for her.  Fingers Crossed!!!
I'm sure everyone is pretty happy there are no pictures that accompanied this post :)

Friday, March 7, 2014

What a Difference...

Flu 1 - Momma Zero. 
Ugh, what a week. 
The kids were out of school, again,  on Monday for snow. Monday night I started feeling bad.  Tuesday I was feeling REALLY bad.  I swear I couldn't have gotten out of bed on Wednesday if my house was on fire - I don't think I have ever had muscle aches that bad before, ever.    It's quite funny how you realize just how much can shut down when Mommy doesn't feel well.  Aaron SO stepped up to the plate and did everything he possibly could to help out and even Zach pulled his own weight. When Aaron left for work at night Zach came in to check on me, asked me if I needed anything, brought me water - and he even made me a card and a bracelet :)  I finally went back to work yesterday and when I got home he was at the fridge pulling out bread and mayo - I asked him if he was making a snack and he told me no, that he was making his lunch for the next day so that I didn't have to do it.  Seriously? 
(Apparently I have bad hair days when I'm sick - don't judge!!)
 Enough of that!
Alex finished intensive PT today and it really had me sad.  I TRULY feel she has made great progress these three weeks - and maybe it's because of her surgery but I just feel like she's on the cusp of something great and I just wanted a few more sessions!  I want to win the lotto so bad so that I can hire Shannon to work with her every day.

I had to share the contrast of these two pictures:
This picture was Alex's first day of intensive therapy.  Notice all of the bungees holding her up, plus Shannon on the floor pushing her knees to a straight extension, plus Alicia holding her shoulders back to get her upright - then notice Alex's face, how scared she looks, how she's biting her fingers so hard.... 

Fast forward three weeks and look at my sweet girl....

NO bungees attached, only Shannon working with her - and barely touching her to keep her upright (if you look closely, she's not even using all of her fingers to hold her upright - it's almost effortless, and that is no easy task!)  She has such a look of peace on her face (ok, so she has T-Rex arms but we'll take what we can get!)

Now, I have to say I can probably count on one hand how many times I've been actually MAD at Alex and today was one of them.  Maybe I should re-phrase MAD.  Have you ever watched your child get up to bat and want so much for them to hit a grand slam, or watch them play a basketball game and hold your breath as they throw a three pointer?   Or almost explode on the inside as you watch them swim a near perfect heat and come in first place?  Clearly I'm drawing on my Zach experiences so insert any sport of choice here and the feeling you feel when it's your child and you are willing so hard with all your might that they win or contribute to the team in such a fabulous way that your own muscles physically ache and that's how I was with her today.  I SO badly wanted to stand her up and just have her muscles respond that I got this serious feeling of disappointment when they didn't that I got upset.  After ALL of the hard work she's been doing these three weeks I KNOW she can support herself - even if it is for a brief, teeny tiny second - she CAN help support some of her weight.  When it was time to take her upstairs for bed and I looked her dead in the eye and told her what I expected of her, I stood her up, and she.....did ABSOLUTELY NOTHING to help support herself.  In fact, she completely pulled her feet up off the floor so that she was even heavier and more dead weight.  As much as I always want to give her the benefit of the doubt - as many times as I have completely second guessed what she understands and what she doesn't, there is a part of me that feels like she is completely playing me and couple that with the pictures I have of her standing with minimal support and you got one HOT MOMMA!  I gave her FIFTEEN chances to help support herself and I KNOW I should not have given up on her, BUT - I'm human - and I'm sick - and I'm weak and couldn't keep lifting her - and I was OVER it. I know I shouldn't have given in to her, but I finally just scooped her up and carried her upstairs.  I KNOW what she's capable of and tomorrow is a whole new day so she better get a good night sleep and be prepared for the wrath of Momma tomorrow :)  I don't think she was phased at all by me being upset - after I got her ready for bed and I took a time out from her I went back in her room and told her why I was upset with her, apologized for getting frustrated and then asked her if she would do a better job of just TRYING and she raised her silly little eyebrows at me (which is her answer for yes) and then the stinker butt reached out, pulled me close for a hug and gave me a super sloppy kiss - she TOTALLY knows how to play me.