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.

Tuesday, November 27, 2012

Happy Birthday Alex!!!

11.  Wow.  In some ways it's so hard to believe my baby girl is 11, and in some ways it feels like I have no clue what my life was like before this journey.  When you have children, your main mission is to teach them.  Teach them what is right and wrong, teach them how to be good citizens, teach them their ABC's, teach them everything they need to know to be happy and successful.  In our case, Alex is the one that has done all of the teaching.  She has taught me how to be patient.  She has taught me to be grateful.  She has taught me not to judge.  She has taught me how to live in the moment.  She has taught me how to laugh in situations when all I want to do is cry.  She has taught me the true meaning of perseverance.  She has taught me that hard work DOES pay off.  She has taught me not to sweat the small stuff.  She has taught me that there are good and caring people in this world.  She has taught me that I am so much stronger than I ever thought I could be.  She has taught me how to be an advocate.  She has, unfortunately also taught me what true heart break feels like.  I don't say that in a bad way, but when she can't communicate her needs/wants/hurts, it's heartbreaking.  When all I can do is hold her when she's seizing, it's heartbreaking.  She has taught me so many other lessons, but probably the most important is true, unbiased, unconditional love.  She is definitely a phenomenal teacher of human emotion.

Since her birthday was on Friday and school was closed for the Thanksgiving holiday, we went to her school with cupcakes to celebrate on Wednesday. 

We came in with quite the entourage!  My niece Emily, my mother-in-law Bev who flew in from Niagara Falls, my mom and my dad. 

Me and Mommy being silly!

Oh, birthday celebrations are great!!!

On Friday morning when she got up we celebrated with some presents....

Alex LOVES rains sticks.  Always has.  Have a feeling she always will!  The problem with the rain stick is that she can't turn it over herself to make the beads fall and make the noise she loves to much.  I found a ball that she can hold onto herself that has a mini rain stick inside so she can make the noise herself...SCORE - she loves it!!
Friday night we had some friends over for cake for her to celebrate.  We decorated the kitchen in a princess theme and everyone wore a tiara - even the boys...they were great sports!

The birthday princess!

Travis, Alex and Tabitha...being silly!

Zachary wrapped his own presents for Alex and helped her open them - I always say it - but I LOVE how she looks at him.

Birthday love from Daddy.

No matter what the present is - you can be sure it will be a hit as long as there is tissue paper involved! 

Her new silly hat from her Auntie Dearest!

On Saturday it was my Dad's birthday so my mom hosted a FABULOUS birthday dinner for Alex and my dad.  Alex LOVES Elmo so my parents went on countless searches to find the new LOL Elmo.

Needless to say she was not disappointed, and of course, Zach was right there to show her how it worked.

Birthday cake time for Alex and her Papa.

Her favorite gift was probably all of the love from her favorite man.

I would say she was a happy birthday girl!!
I did a REALLY bad job of getting pictures with her and family and friends this year....so I apoligize!
I love what Aaron posted on Facebook as his status for the day....I think it emulates how a lot of us feel and our wish for her.
"Happy birthday to my little angel who is 11 years old today, I love you Alex. You bring so much joy to our lives and you are my special girl. I pray for a great year of nothing but amazing accomplishments and health."
So happy birthday my sweet girl.  You are loved beyond words.

Wednesday, November 14, 2012

Catching Up

I don't know where to start I haven't blogged in so long :)

I guess I'll start with Halloween.  Zach had his costume picked out and purchased a month before.  We had gone to see the movie Hotel Transylvania and he decided he wanted to be a vampire.  He's a kid who knows what he wants when he wants it!  Alex, yeah, I was out getting hers the day of!  I wasn't even sure I was going to take her out - but Aaron said of course she's going!  It's not that I didn't want to take her - she loves her early bed time - sun goes down and she's ready!  Plus it was COLD - and quite frankly, she couldn't give a rip about Halloween as far as I can tell!  And she can't eat the candy she gets anyway.  I will say since I waited till the last minute it was by far the worst costume year for her - and I didn't even really take any pictures this year, which isn't like me. 

Alex looks a little scary in this picture - guess that's her Halloween look!  She was a girl vampire.

Zach "without his teeth"...
And with...
I got Zach's Fall school pictures back - he looks so grown up - but I think I say that every year!
I never got Alex's and couldn't figure out why - then come to find out, I never turned in the check with the order form.  Ugh, Seriously?!?  Tabitha had taken one of the pics the photographer took with her phone.  I guess I'll need to call the studio and see if it's too late to order some.  I swear I do not know where my mind is lately!!!

As I usually do, I got fed up and frustrated with her hair last week!  She has always had beautiful hair - very shiny with gorgeous purple highlights.  Ever since the lice episode back in the summer, her hair has been dull and 'icky' looking.  The chemicals totally stripped her hair and it wasn't looking healthy at all....so we cut it all off again!  It really is so much more managable this way.  It's already starting to look healthier but I think it makes her look a lot older!

Heading off on the bus the morning after her cut :)

Now on to the BIG and EXCITING news.
Despite the seizures still being an issue (and adjusting her meds AGAIN), Alex has been making some pretty amazing progress.

Because of her low tone she's never been able to spend any time on her stomach holding herself up.  Lately she is trying to get up on her arms by herself, and she's been tolerating the position for long amounts of time.  And she is a LOT more focused on things.  Not only is she supporting herself, but she's actually reaching out to activate her toy....HUGE progress for her.

Last week we were THRILLED to start working with our physical therapist Shannon again.  It's been a long time since we've had her as Alex's PT and we couldn't be happier. I was really concerned with the tightness in Alex's legs - her hamstrings were so tight we could barely get her legs straight.  Every time we would stand her up she would have her knees completely bent and she looked liked a hunch back.  When Shannon saw her last week she agreed it was the tightest she had ever been.  And she mentioned that if we couldn't get her to loosen up there was the option of serial casting both of her legs to get the muscles to stretch.  I can barely carry her now - I can't imagine how heavy she would be with two casts on!  NOT an option!!!  We always stretch her out, but we now have a really vigorous stretching routine we do with her.  It's been difficult for me because Alex is not a crier - and when we stretch her, she cries.  I can only imagine how painful and sore she must be and that makes me sad for her.  BUTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTTT, the stretching is clearly working.  This weekend Alex WALKED in her walker WITH ZERO ASSIST for 15 MINUTES!!!!!  She facilitated every one of her own steps.  The first time ever!!!  I uploaded a video of her walking on facebook and wish I could here, but the files too big.  I'll have to take a shorter one.  She's been walking every day in her walker since.  We still have a lot of positioning and things to work on, but the motor planning of right foot, left foot, right foot, left foot is there and that is more than half the battle!!  Definitely one proud Mama!!!