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.

Friday, May 23, 2014

Random Stuff

Thank you for all of the love last week - I am feeling SO much better!  I had a follow-up this week and my kidneys are looking better and no additional follow-up is needed so all is good!
There's no rhyme or reason to this post - in no particular order here are just some random things I wanted to post about.
Last weekend Aaron, as usual, totally stepped up to the plate and got the kids where they needed to be while I was in bed. I love that he is so involved in all the kids do and that things don't have to come to a screeching halt for the them because I got sick.
Alex has now checked her fourth Inclusive Racing race off her list and she participated in Abby's 5K Race for Hope.

This race she ran with the one and only Sarah Armstrong who she gets to hang out with when she's rocking out her therapy at Richmond Hope Therapy.

I know I say it every race, but she truly, truly enjoys the whole running experience!
Zach also got his second 5K under his belt and ran as well!


Speaking of Zach, he is doing so well with his piano playing - he had a recital two weekends ago and his teacher said both of his songs were absolutely perfect and there was zero detection of nerves during the recital.  I love to listen to him play and thankfully he's humoring me for the time being!

Two weeks ago was Zach's school Field Day - which can only mean that the end of the school year is drawing near - this year was a really great year for him and it's really hard to believe how fast this year went.  I can't even begin to think about him being a FIFTH grader next year.  Gulp!

Alex has been playing baseball with River City Buddy Ball when her busy social calendar allows :)  A few weekends ago the theme was "Disco Day" so Alex showed up in her finest disco look!   Makes me chuckle every time I look at it.

On to the cat - poor Max never gets any blog recognition :)  I bought the dog a dog bed a while back - and I have to keep a real close eye on it because Rudy LOVES to eat his beds.  I can't put it in his crate because that's just an automatic guarantee it will be in shreds within 5 minutes so I've been leaving it up in my room for when the dog's hanging out upstairs with us.  Our cat, Max, however has decided that Rudy's rightful place is on the floor and he's taking ownership of the bed.  Rudy tried to get a bone that he buried in the corner of the doggie bed while the cat was trying to take a nap - it wasn't pretty for Rudy - Max gave him quite the beat down!  Zach and I brought Max home when Zach was three years old - and on our way home we stopped at the store to pick up all the things we need for the new kitty and Zach picked up this little brown teddy bear for the cat.  I explained to Zach that cat's weren't really interested in stuffed animals, they were more into strings and little mice toys - but Zach really thought Max should have it - so, we got it.  Anyway - fast forward six years and Max just absolutely loves his "baby" - he sleeps with that little teddy bear - carries it around, gives it a bath - it's the cutest thing to watch him with it.  So not only did Max move into his new kitty bed - he makes sure that baby is comfortably sleeping with him as well :)  How cute is that?

Finally, this week started swim team practice!  Have to say, I was not envious of those kids at all - it has been pretty cool lately and that water is NOT warm!!!  Brrrr!!!!!  But, Zach is part fish and totally psyched that it's swim team time!

Here's to a great holiday weekend!

Saturday, May 17, 2014

Mother's Day and My Not So Great Week!

Mother's Day started out as an awesome day - I got to sleep in late, Aaron and Zach brought me breakfast in bed, I got beautiful cards and presents, we took a walk as a family around the neighborhood, I went out by myself for an hour and did some shopping, got myself some Starbucks, ahh.  It was nice!   Later that afternoon we went to my sisters and she had a great dinner for all us and we enjoyed some family time and celebrated mom.

Mom and her kids!
Me, Dana and Danny
The Family

I got to reflect and be thankful for these two who gave me the best job I could ever have.

 It was a great day!
And it all ended right there.  We got home and put the kids to bed and Aaron and sat out on the porch.  Out of no where my throat started hurting just on the right side - there was some pollen on the porch so I chalked it up to that and we went inside.  The next morning I got up to get the kids ready for school and it took everything I had to get them out the door - my throat was killing me, my head was pounding and my back was killing me.  I crawled back in bed when they were gone and was going to go into work a little late.  Never made it.  I couldn't get out of bed.  My throat felt like I was swallowing razor blades still on that one side and my back still felt like I had gone five rounds with Mike Tyson.  Aaron had gone on a field trip with Zach and when they got home later that afternoon I got out of bed and looked in the mirror at my throat - UGGHH - it was NASTY looking.  I got dressed and headed up to the after hours clinic.  When I got there and they did my vitals I had a 102 temp.  They swabbed me for strep, but it was negative.  They also did a urine culture and it turned out I had a lot of microscopic blood in my culture so he gave me a antibiotic called Ceftin and said I should be feeling better in 24-48 hours.  Yeah, right.  Tuesday I couldn't even drink anything my throat was bad, my back was still killing me and I was in bed the entire day.  And that anti biotic he gave me?  Do you know how bad cat pee smells?  Well that's exactly what this pill tastes like - Nasty with a capital N.  Aaron had to work but I couldn't get up to get Alex to therapy or even pick Zach up from school so my parents spent the day helping out with everything including getting Alex ready for bed.    Wednesday I woke up and even though I didn't think it could be possible, I felt even worse.  My throat looked worse too.  I made an appointment and went and saw my regular doctor.  She ran some tests, took more urine, swabbed me again for strep, and tested me for mono.  The doctor said she was concerned about the significant amount of blood in my sample but if she was prioritizing things, she really didn't like the way my throat looked and she wanted me to first see an ENT and then a urologist.  I felt so bad at that point I would have gone to the moon if I knew I would feel better.  I left her office and called my mom to tell her about having to go to the ENT and she got in the car and come over so she could go with me - and let me just say thank god she did.  While the doctor was great and I loved his banter and bed side manor - it was a horrible experience. I had a peri-tonsillar abscess that the doctor had to cut and drain.  The numbing stuff he sprayed in my mouth was enough to bring me out of the chair and had tears streaming down my face, but to add insult to injury, that was just to prep my incredibly swollen, red, irritated and uncomfortable throat for the huge metal needle of Novocain he was going to shoot me four times with.  And if that wasn't enough agony or torture, he made a big incision in the top of my tonsil.  I am so not lying when I say I would rather have given birth.  To twins.  Twice on Sunday.  It was a horrible experience.  BUT, he said I should feel some relief soon.  Yeah, right.  Mom couldn't even get me out of the pharmacy without having to give me my pain meds.  I was in so much pain.  And it didn't get any better once we got home - I couldn't talk.  I had to write down what I wanted to say.  And the pain to try and swallow was ridiculous.  Remember the cat pee pill??  Yeah, I still had to try and get that down so mom and dad crushed it and put it in yogurt.  Cat pee yogurt, not a flavor I see Dannon having on the shelves anytime soon.  I just couldn't swallow.  It was so bad that I went and got Alex's suction machine and had to suction myself so I didn't have to swallow.  Mom was so concerned about me becoming dehydrated and she kept trying to get me to drink but it was out of the question.  Despite all of the pain medicine, I still had a really hard time sleeping and I kept feeling like there was something stuck in my throat.  When I got up on Thursday and mom came in to check on me I told her something was stuck in my throat - I went to the mirror to see that my uvula (the hangy thing in the back of your throat) was so swollen that when I laid down I was actually swallowing that thing!  S.E.R.I.O.U.S.L.Y????  What else?!?  I freaked out and thank god for Google is all I have to say.  Turns out that's a pretty common thing that can happen when you are dehydrated.  I didn't care how painful it was I was determined to drink whatever I could to shrink that sucker back to size - talk about absolutely grossness!  I was still feeling so bad so I had to cancel the urology appointment the doctor had made for me - there was no way I could make it.  Friday when I woke up things were no better, in fact, the other side of my throat started getting infected and I was so nauseous from not eating all week and having to take so much medicine, so once Aaron got the kids off to school he put me in the car and took me to the Emergency Room.  And within an hour, mom was right by my bed.  Another negative strep test, another negative mono test and another positive culture test.  The doctors are thinking that maybe a strep virus could have gone to my kidneys which is making these cultures positive.  The ER did send me to ultrasound to make sure there was nothing significantly wrong with my kidneys.  I joked with Aaron that the last time we were in an ultrasound room together we were looking at a baby and there better be no baby on today's exam - everyone will be happy to know the only new addition we apparently have to the family is a gallstone.  Not that that's what is causing my problem, but nice to know - I guess?  The hospital was completely full so I was lucky enough to have a bed in a busy hallway in front of the nurses station - but I would have taken a bed in the parking lot at this point.  I finally got an IV put in - AFTER the first one went bad and got some much needed IV fluids, IV anti-biotic, IV pain meds and an IV steroid.  And the lovely ER doctor decided to take me off the cat pee pill and try an anti-biotic called Clindamycin.  She sent me home with my new best friend called Magic Mouthwash - I swear I hear little choirs of angels when I use that stuff.  She also sent me home with dissolvable Zofran pills so when all of the meds I have to take on a stomach with no food in it since practically Sunday I can tolerate it better.  My pharmacy didn't have the Clindamycin so they called around and Aaron finally was able to pick everything up and I had to laugh when I went to take a dose of the Clindamycin - I went from cat pee to Miracle Grow.  Seriously why do these medicines have to taste so bad?!?   I took two doses of Clindamycin yesterday and when I woke up this morning I was SO thankful for IV Drugs because I could SWALLOW AND I GOT OUT OF BED!!!  WHOO HOOOO, OH HAPPY DAY!!!!!!!!!!!!!!!!  B-U-T, it can't be that easy, can it?!?  I looked in the mirror (maybe I should just stop looking in the mirror?!?) and thought I looked a little flushed - but I have been running fevers so I assumed I was probably a little flushed and didn't give it much more thought - that is until I took my morning dose of the Clindamycin and a little later realized it looked like I had fallen asleep under a sun lamp.  Yep - allergic reaction.  This story just keeps getting better and better!!!  My pharmacist, who knows all of us in the Hayes house on a first name basis and has actually told me it doesn't seem like there's ever a dull moment at our house, told me to stop taking it immediately (duh!) and get some Benadryl - which I then had to call my mom and ask if it was ok if I took some expired Benadryl (it was only 2 months expired) - given my luck though god knows!  SOOOO - now I'm on a third anti-biotic, Augementin, which I have not taken yet, but I'm praying it has no foul taste - there has to be a silver lining somewhere in here!  Oh, and the doctor who changed the prescription also put me on a steroid pack for the week.  So - between co-pays for office visits and all of the prescriptions I've had filled so far this lovely sore throat has cost me over $400!
There are three things I do know for sure:  1.  My mother is making sure to check her caller ID now before she answers the phone and likely cringes when she sees my number.  2.  I could not have gotten through this week without her and 3. I definitely did not get her a big enough Mother's Day present.  Good thing her birthday is coming up!

Thursday, May 8, 2014

We Heart Harlie And Friends!

Saturday was the We Heart Harlie and Friends Fundraiser and I really just do not have the words to describe my thoughts and feelings about the day.   There were several times throughout the event I got emotional and cried and it's hard to articulate why.  It's one thing to be in a group setting of lots of special needs families coming together for a cause, but when you have an entire community come together solely because they care about your child, it's overwhelming.  To see 140+ runners take off on a 5K to benefit your child, it's overwhelming.  To see hundreds of people bidding on raffles because they know it's going to benefit your child, it's overwhelming.  The love that enveloped the gymnasium, was overwhelming.  I have never been more proud or honored to be part of such an amazing event surrounded by an amazing community.  I was also so blessed to be among four exceptional women I am lucky to call my friends.  The four of us share a special bond, and more often than not, our lives are hard, and stressful, and sometimes scary.  To be able to put all of that aside for one day and feel so much love is just indescribable.  Every time I think about the event or talk to someone about it I realize I have a big huge grin on my face.  I so wish I could turn back time and do it all over again.

And it is really all thanks to one person.
Lynda, you are one amazing person who has such a beautiful heart.  You give 110% so that our girls can have a better life.  How does one thank someone for that?  The world would be such a better place if there were more of you in it.  Thank you so much for including us in this amazing day.
“You have not lived today until you have done something for someone who can never repay you.”
John Bunyan
You, my friend, have lived.
Here is a link to the video that was played of our four brave girls.

For the 5K our favorite running group, Inclusive Racing, supported us by signing up teams to race.  It was our first race in sunshine!!! 

They lined up....

Talked a little strategy....

Took their marks....

And they were off!
One of the great things I love about Inclusive Racing, besides the face that Alex just loves it, is the friendships we make.
Meet Alex's running partner, and our new friend, Nate....
And not to brag or anything, but Nate ran the 5K in under 25 minutes and was the first wheelchair to cross the finish line, making that 2 in a row for Alex!  Go Nate!
Alex was very pleased with their run....
...and her new friend Nate.
I was very proud of Zach too!

He ran his very first 5K!
He ran the kids 1/2 mile fun run and then took off for the 5K with Jonah.

They crossed the finish line a little over 29 minutes, which I thought was pretty impressive for his first run!
I did have to post this picture because I thought it was pretty funny....
Um, Zach - what happened to your leg?!?
We were SO happy to have family in from Niagara Falls, New York - and a big huge thank you to Aaron's mom, Bev, Aunt Barbra and Uncle Louie for driving all through the night to be there. 
Zach and Uncle Louie right before Zach's race
Alex is definitely one loved little girl!

A congratulations kiss from Ms. Tammy right after she finished her race.

Clearly she was happy to have Ms. Tammy there!

And we loved having her whole family there!

And Dana and Jonah.
And of course Papa.

I wish I would have gotten pictures of Alex with everyone that came out to support her but unfortunately my battery died half way through the day.

It definitely would not have been a party without cotton candy!
She had a very nice sugar high!
And she loved having her princess crown painted on her cheek!
She had a great time!

And so did we.

Thank you to everyone who supported We Heart Harlie and Friends.  Thank you for all of the volunteers, all of the people who donated raffles and served in any way.  Thank you again to our family and friends, our community, to Lynda and the We Heart Harlie and Friends Foundation.  You have made a forever difference in our lives...
 ...and we are SO grateful.