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, April 26, 2013

A Brag On My Boys!

Last Tuesday night we went to the Division of Police's Spring Awards Ceremony where Aaron received two awards.  His division received a certificate of merit as a group and Aaron himself received the Leslie T. Sheppard Award.  The Leslie T. Sheppard Award is presented to employees who made significant contributions to the Division or to the safety of the citizens of the County, or enhanced the Division's image within the County.  Aaron works really hard so I'm so proud of him.

My two guys!
On Thursday night Zach had the 3rd grade Harmonica concert.  Oh my gosh they were SO cute!!!  They did such a great job playing Ode to Joy, the themes from Star Wars and Build Me Up Butter Cup.  Zach's been singing Build Me Up Butter Cup for weeks now - still is.  I love hearing him sing it.

So handsome.  And for the record....no more clip on ties!


Friday, April 12, 2013

Two Recent Appointments

We had two recent appointments - one really good, one not so good.
Last week we went to Children's Hospital to have an Assistive Technology evaluation to try and find, yet again, some type of means for Alex to be able to communicate with us.  I wasn't really hopeful going into the appointment, but the team we met with was really great.  They offered up a ton of suggestions for assistive technology things for her - one was a box that has plugs in that we can plug anything into that's connected to a switch.  For example, Alex loves the sound the blender makes when pureeing her food.  So we could plug the blender into this box, she can hit a switch and it will make the blender work so in essence she can help make her food.  At first I didn't think it was something worth exploring, but the more suggestions they gave me, the more excited I got about it and the possibilities.  One of the toys they brought out was a vibrating textured light.  It looks something like this:

It also plays music - so it lights up, vibrates and plays music - a trifecta of things Alex loves!  However, that little piece of plastic is $180!!!  Sometimes it really makes me angry at how costly things are for people with special needs.

We've tried a few different communication models with Alex.  We've tried communication apps on the ipad, but Alex doesn't have the finger dexterity to point to one thing - she hits the ipad with her whole palm so it selects multiple things at the same time.  We've tried PECS - the picture exchange system, we've tried an eye gaze computer - all unsuccessful.  Alex will focus on things with eyes and sometimes even reach out to grab her preference of two items.  We have tons of pictures of all of her toys, books, puzzles, etc. and we'll use those to see what she wants to play with.  Not really helpful though if she wants to communicate something - or if something is hurting her, or if she's hungry, etc.  The only way to know when Alex is frustrated or hurting is by her biting her arm - she's done that for years and it's not really an ideal way for her to communicate her frustrations.  All of the communication devices or apps cost a lot of money and until she demonstrates the ability to use the devices, it's really futile to get one.
The team at Children's talked about using the PODD method (Pragmatic Organization Dynamic Display).  The GREAT thing about this is that's it's completely paper and pictures - no expensive gadgets.  Basically you start out with four squares in a binder.  The first square might be "I'd like to play", the second "I have something to say", the third, "Some thing's bothering me", etc.  You offer Alex the four squares and she can either use a switch to say "That One", or until we work up to that, she can focus her eyes on the square.  Once you know what choice she wants to make, you flip to another section in your binder that correlates to what she chose.  So if she chose "I'd like to play", we'd flip to a section that has pictures of all of her toys - and she can then pick what SHE wants to play with.  I'm pretty excited about starting this - I think this could open up HUGE communication windows for her.
Yesterday we went for a genetics appointment.  I really liked the genetic counselor that we met with first.  Alex was being her silly self and we told her that because the doctor was a man that she would likely flirt with him...and she did.  I love how she's been sitting lately - she looks so grown up.

There are so many new tests out, one in particular, that is diagnosing a lot of clinically diagnosed children.   This is Alex's genetics binder that I keep:


I had so many questions and things that I wanted to discuss but the doctor was so flippant about everything I had to say - and when I had specific examples to challenge something he said, he clearly wasn't thrilled with me.  When I mentioned the testing I wanted done he brought up that it costs a lot of money - over $10,000 and most insurance companies aren't paying for it yet. But, some are I rebutted to which he tried to disagree. Did he not think I did my homework before I got there?!?  I get that the testing is expensive - but who is he to determine that because Alex is "unique" (his words) that we should wait on the testing.  It didn't take me very long to realize I wasn't going to get far with him so the binder never even came into play.  He told us to come back in a year when HE felt like science would be a little further along with the testing, however, should HE feel like the testing was progressing at a faster rate he would give me a call.  Yeah right, I'll anxiously wait by the phone for that call.  I get SOOOOOOO frustrated with doctors who have a God complex.  This doctor is new to Richmond so I did a bit of research on him and his reviews were not very good where he was, and it appears from the ratings here he isn't making a very good impression here either.  Needless to say we wont be going back to see him and I told Alex she really needs to work on who she gives all of her flirty adoring stares and eyebrow raises to!

Last night Alex got a real bad stomach bug.  I don't think I've ever seen her this sick - or see her cry the way she did.  Alex had a Nissen Fundoplication when she had her feeding tube put in and technically she is not supposed to be able to vomit so when she does she has to work extra hard at it and it's heartbreaking to watch (I wish I had been better informed about the Nissen - I would never have let them do it knowing what I know now).  She's not keeping any fluids in today and she's still running 102 temperature.  She's been sleeping a lot today so I'm praying this is a 24 hour bug and she feels better soon - and the rest of us don't get it.

Tuesday, April 9, 2013

Long Weekend at the Beach!

We started Spring Break with a long weekend trip to the beach with our friends Scott and Leslie.  Sometimes just getting out of your normal surroundings can be enough to recharge your batteries some!
Alex was SO good while we were gone.  And thank God - NO SEIZURES!!!! :)
Saturday night we got the kids together to color Easter Eggs.
I love these 2 pictures of all of them.
Alex really does enjoy this every year.
Two goofy kids and their eggs! 
Alex was kind enough to wait until the last egg was in before she grabbed the purple dye and dumped it in her lap :)
She was pretty pleased with herself!
The kids went to bed and the Easter Bunny came and hid eggs and left Easter baskets.  It was raining outside so the egg hunt had to stay in doors.
 The boys got up pretty early to inspect their goodies.
Alex was pleased with her basket.
Let the hunt begin!
(Those bent knees are just killing me!  I hope she starts feeling more confident about her standing soon!)
It stopped raining by the afternoon so we were able to take a walk down to the beach.  The boys and the dogs got to go down to the ocean, but because the sand was so wet we couldn't take Alex's wheelchair.
We stayed up top on the ramp down to the beach and Alex was NOT happy!  She saw the ocean and she wanted to get as close to it as possible!
We moved her to the end of the ramp and that made her much happier.
This was Rudy's first experience at the beach and in the sand....he loved it!!

Before dinner we  had fun playing our favorite past time game...corn hole :)
 Rudy and Fred got along the best they have so far.  Rudy is just a little too much of a wild man for Fred!! 
After the trip to the beach that day they were exhausted!

 How cute are they?!? 

It was a fun few days.  Now we just have to wait till August for our beach trip :)

Wednesday, April 3, 2013

Intensive Physical Therapy

Before I start this post - let me say thank you for all the phone calls, cards, texts and Facebook messages regarding my last post.  It means the world to me and sometimes just knowing people care about us and Alex is enough to get by.

On Friday Alex finished her 3 week intensive physical therapy at Bon Secours Richmond Hope Therapy.  She went 5 days a week for 3 weeks, 3 hours a day.  Imagine not using a lot of your muscles and then waking up one day and going to the gym and doing hard core workouts for 3 straight hours.  Every morning she would wake up and go to stretch and then grimace at how sore her poor muscles were!  She was such a trooper about being there - and each day she did better than the day before.  And for the most part - she did it with a smile on her face.

I've said it numerous times before, but her PT Shannon is just the best there is - hands down.  She pushes Alex to her full potential and Alex KNOWS she is not going to get away with anything less than what she's supposed to do!  Throw another person in the mix if Shannon is not there and it's a TOTALLY different story!

She constantly needs stimulation to make her do what she's supposed to....
And you can just tell by this picture how everyone claps, cheers and gets happy and excited when she does what she's supposed to.  And I will tell you, that girl works for claps! :)

Here are a few pictures of her working out in the "cage".  It takes a village :)


She really liked the cage exercises, actually.

The biggest challenge right now is her legs.  She hit such a big growth spurt (almost 5 feet and 64 pounds) and she stands with her knees completely bent.  Her first measurement had one of her knees at a minus 22 (normal would be 0) - so there was a lot of work needed to be done stretching those knees.  She is totally uncomfortable standing without some kind of support and bends her knees to compensate. I can't find the piece of paper I wrote her measurements down on, but after the first week she improved drastically.  Here's Shannon getting a total workout herself trying to get Alex to stand and straighten her knees at the same time.

Bouncing and bubbles help the situation :)
This is one of my favorite pictures of her walking....she looks so proud of herself!
Speaking of walking, here's a quick clip of her.  She was rocking it out day after day - but every time I showed up she just wanted to act all pitiful for me and not do what she was supposed to!  One of the motivating things for her to do was to walk to me to give me a hug.  Win/Win for the both of us!

At the end of each session she was completely exhausted - and who can blame her?!?  She inspires me to get myself out exercising again!

I love Hope Therapy.  I think we are so blessed to have such a great place for our kids to go to get the best therapy for them.  And I am extremely thankful for Shannon.  She is truly the best of the best.  She pushes my girl to be the best that she can be.  She sees all of her possibilities, not her limitations and she is always thinking outside the box to help Alex reach her full potential. THANK YOU SHANNON, you are our hero and we're so grateful for you and ALL that you do!!!