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.

Saturday, April 26, 2014

Happy Easter!

I'm a week late, but it's been an extremely busy week!!
Alex LOVES when we color Easter eggs so I always look forward to coloring eggs with her and Zach. 

Normally we make silly eggs and decorate them all crazy, but this year we changed it up and just decided to keep 'em simple.


Minus the drool, I love how she's looking at Zach like "Do you see my pink egg?!?"  These are the times I so wish I could hear her voice!

It's a fun family activity that we all can do together and have fun with!
It's the little things....that's pure joy right there!

The bunny came, hid the eggs and left their baskets.

I'm pretty sure I've mentioned that basketball is pretty huge for Zach so the basketball sleeve that he got clearly had him in awe ;)

And Alex was pretty pleased with her pinkalicious basket :)

Off to find the eggs....
...with Alex not really weight bearing at all it was quite the work out for Daddy - especially since he worked the whole night before and was pretty exhausted.

It was pretty comical to me how interested and involved the dog wanted to be!  He followed Zach's every single move - maybe he smelled chocolate!


When all the eggs were found I was super impressed that Zach wanted to divide all the eggs up so he and Alex were equal.

Happy girl.

She was very engaged investigating everything.

This microphone echos when you talk into it and it's something she finds hysterical, she laughs into it every single time I hold it up to her :)

Aaron helped Zach check out his loot :)

Later that afternoon we went to my parents to have dinner with the family.  While the house smelled DELICIOUS, I wish I could say dinner was amazing, but I'm a 21 day cleanse so I couldn't eat any of it....that was hard!!!

Zach and his cousin Emily checking out their baskets from Grandma Pam.

And, of course, Alex was in her glory with her Papa.

Alex and her cousin Abby

Shane and his mom, Pam.  My poor sister had the flu so she wasn't with us :(

After dinner sissy and Me-Me took a nice walk

Me and my brother

Jason, Danny and Twila

As always, a nice family day.

Wednesday, April 16, 2014

TV Debut!

We have had a pretty extraordinary week as far as the fundraiser and We Heart Harlie and Friends Foundation goes! 

Last Monday I received a phone call NBC12 News was coming to our house to do a story on my friend Lynda - the founder of We Heart Harlie and Friends Foundation!  It was a surprise for Lynda and she had no idea what we were up to, but we could never repay her for all that she does for this foundation and what she is doing to help our girls.  Lynda truly puts her heart and soul into the foundation and the event and we wanted to thank her in some way.  NBC12 runs a story each week called Acts of Kindness, and as I said to them when we initially talked "Lynda is truly a remarkable person with the most kind and loving spirit that truly deserves recognition for volunteering all of her time and energy on helping others - I can think of no greater act of kindness than to sacrifice all of your time to make a difference in the lives of others." 
So, we met with Sabrina Squire and Matt, "our" camera man last Thursday and it was such a great experience.  They could not have been any nicer or made us feel any more comfortable if they tried.  They got over an hour of footage so we were all really anxious to see what the piece would look like in just 3 or 4 minutes. 
I can't describe it, but the feel in my house that afternoon was just happy - I really don't know how else to explain it.  After Sabrina and Matt left we toasted ourselves and the foundation and talked and laughed.  Given everything we all have going on on any given day, at any given moment, for just a few hours we acted like we really didn't have a care in the world.  And we all had the same thing in common and sometimes it's just really nice to be in a crowd where you aren't the odd man out.
So.....here is the link to our story that aired on the 5:00 news last night!!!  I am SO proud to call these ladies my friends.


Tuesday, April 8, 2014

Dental Surgery - Check!

One more thing done and checked off the list.  Back in November Alex had her routine dental check up and for the first time ever they were able to get x-rays of her teeth.  Technology has come such a LONG way and they had this little portable machine that they were able to get the pictures with.  Don't get me wrong, the poor dental assistant was sweating by the time she was done, but they were actually able to get films - impressive!  Unfortunately, the films revealed three cavities!  I don't know why I was surprised, she is 12 - don't most kids have quite a few cavities before 12? (I know her brother does!) - BUT she BARELY has anything sweet - and even if she does A) it's quite miniscule in proportion and B) she normally gets her teeth brushed FOUR times a day!  This is not our first rodeo with the dentist so we know how important dental hygiene is given the fact that she pools so much drool in her mouth and the fact that she constantly has her mouth open, inviting tons of germs and pollutants in so we are really conscious of that and brush, brush, brush.  Because she was having her knee surgery in December, we pushed off her dental procedures since she had to be in the hospital under general anesthesia for the procedures.  In hindsight, I don't think my planning was very good.  With the surgical follow-up in Charlottesville yesterday, and then going to the hospital this morning, I can't help but think that maybe she was associating the surgeon visit with the hospital visit.  I tried to talk to her and tell her what was going to happen just in case she was actually worried about it - it is times like that it absolutely KILLS me we cannot have an open dialogue with each other.  She was definitely less than thrilled to be in the pre-op room and having her vitals taken.

Aaron and I stayed with her until it was time to go back to the Operating Room so it was one last kiss and off to the waiting room.

There was talk of having to cut her gums and do some extractions and stitches on two of her back teeth in addition to the fillings and deep scaling - THANKFULLY the dentist opted not to do that, it's a bridge we can cross later if we need to.  I couldn't have been happier with that news!!!   He said everything looked good with the exception of her bottom gums which were very inflamed and we need to be really careful about how hard we brush because the last thing we want to worry about is a gum graft.
Once I got back to the recovery room Alex was very, very agitated and upset.  She was crying and she had her IV lines and her pulse ox lines all wrapped around her neck and arms.  She kept pulling her legs up to her chest so that again makes me think that she might have been thinking her legs were in casts again.  At that point I hadn't seen the doctor yet so I was trying to look in her mouth and see if there was excess blood and I was pretty sure I knew the answer before he came in.  The last time she had dental surgery and they pulled 5 teeth her mouth was really bloody so I took comfort in the fact that I didn't see any.  Her biggest complaint seemed to be her nose - she was pulling and pulling at her nose and that was bleeding and the nurse said she had a nasal intubation so that's why her nose was so irritated.   It took a good while for me to get her fully awake and not so upset.  Her eyes and lips were a bit swollen but we were ready to hit the road!
The longer it took for our discharge process the more upset she was.  I've never had anesthesia so I have no way of commiserating with her or know how rotten she's feeling. 
She really breaks my heart when she cries like that and she can't tell me what's wrong.

She came home and slept for over two hours.  We kept her strictly on tube feedings today and I went and got the movie Frozen which she really seemed to enjoy.  MAYBE, just MAYBE we can add that into our rotation - she has watched the same three movies every day over and over and over and over and over and over for the last six or seven years now - we need some new material!  The girl likes what she likes and she's quite consistent!

Hopefully that's the last of anesthesia for a while.  A l.o.n.g while!

Monday, April 7, 2014

Charlottesville Follow-Up

Today was the follow-up with her surgeon in Charlottesville and the Dr. was very pleased with her progress.  For her vitals she was out of her chair and sat up SO good!  She got a little uneasy with the blood pressure cuff but did great.

She was fussy when she got to the exam room - Aaron took her out of her wheel chair and sat her up in a regular chair and she was happy to sit there and wait for the Dr. to come in. 
She's wearing her Ariel Princess sticker that she got after she had her x-rays done.  The doctor said her x-rays looked great and the hardware was exactly where it should be.  Alex's left knee feels like rice krispies when you manipulate it - it's very springy feeling and the Dr. said what we're feeling is the spring in the hardware and that's just not going to go away.  Additionally, we've noticed a lot more bruising on her knees recently and the Dr. said that the hardware in her knees is just right under the skin so that is not surprising to him at all.  After intensive therapy her knees were at -8 and -6 and he thought that was fantastic. We still put her in her hound dog braces, do tons of stretches, stander, sit to stand exercises, etc. so he said to keep it all up.  We are waiting and waiting for full knee extension from her, especially with walking but the Dr. stressed more than once that his best "guestimate" is that it is going to take over a year before she gets there and he reminded us as she grows the hardware will force her legs straighter and straighter.  One last issue we wanted to talk about was Alex's toes and toe nails turning blue. 

 Alex tends to contract her toes tightly like this, a lot, so the Dr. said he attributes the blueness to that.
Overall a good appointment.  She's gained weight again so she's now up to 68 pounds, almost back to her pre-surgical weight back in December.  They had her height at 4 ft. 9 inches but that was with her shoes on so I'm deducting some!
Tomorrow we have to be at the hospital at 6AM for some dental surgery, that is way too early - no rest for the weary :)

Sunday, April 6, 2014

Time for Baseball!

I have no idea why, but I'm in a funk.  I'm in a bad mood and pretty much have been for the last week and as the saying goes "If Momma aint happy, aint nobody happy." Zach and Aaron have both asked why I'm in such a bad mood and I have no answer.  I'm beginning to get on my own nerves so I feel for them.
Yesterday was the first baseball game of the season with River City Buddy Ball.  She and Daddy went up to receive her t-shirt and hat....

She's on the Orioles this year :)

It was a perfect day for a baseball game.  I will say Alex has been in a REALLY bad mood lately too  - I don't know if she's picking it up from me or it's her allergies, or what - she's sleeping a lot and just plain ole grumpy.  Poor boys - both of the girls are grumpy!

When it was her turn up to bat she wasn't too thrilled with the helmet.

 Daddy and Zach helped her hit the ball...

...and got her around all of the bases....

Coming in to home plate!  It was a little more exciting then their faces are letting on :)

This year Buddy Ball introduced Cheerleading!  Shannon's daughter Makayla is one of the cheerleaders - and one of Alex's biggest cheerleaders  - she is SO sweet with her.  She's asking for a high five here and she kept wiping Alex's face and giving her her Chewy P she was so loving and sweet :)

Sharing the love!

By the time we took this picture she was tired and more than ready to head home.

Today we went to the park for a little bit - I was hoping getting out and soaking up some Vitamin D would help my mood!

Zach has been itching to go fishing...

Sissy and I took off on some trails and had a really nice long walk.

Rudy had been outside all day long and then ran a good walk with me at the park so he took a little bit of a break and enjoyed a little bit of a free ride.

A little extra loving from Daddy....

Zach wasn't thrilled when it was time to leave, but the fish weren't biting at all, not that he cared!

Tomorrow we have physical therapy first thing in the morning and then we're heading up to Charlottesville to see her surgeon.  Here's hoping we both wake up in a better mood!