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, February 27, 2011

Here Comes The...

Junior Bridesmaid and a lot of pictures!!  Yesterday we went with my mom and Jennifer to pick out Alex's Junior Bridesmaid dress for Jennifer's wedding.


I don't know what else to say except that it was a great time.  Alex was so cooperative and really enjoyed the whole experience.  She was so good and I loved every minute of it. 







When we took her out of the dressing room and put her in front of all the mirrors she looked at herself and started smiling.  It was priceless.





Here's the bride and Alex in the dress we picked out.  She looked beautiful.  I honestly never thought that I would have the opportunity to dress shop for Alex like that.  It's an amazing gift that Jennifer gave us asking Alex to be a part of her special day.  It's a true testament to what an amazing person Jennifer is and just how big her heart is.  I'll never be able to begin to tell her what this means to me.



 After we got the dress we went to out to lunch to celebrate.  It really was just the best day...ever!

Friday, February 25, 2011

This Is How She Rolls!

A few months ago Zach got a t-shirt with a skateboard on it that said "This is how I roll".  Jennifer and I joked that we were going to make a t-shirt for Alex with a picture of a wheel chair that says "This is how I roll"!  So I was sooooo excited when Alex had a note come home in her folder that said there was a Spirit Day at her school and her teacher had t-shirts made that said "School Rocks AND Rolls" with a picture of a wheel chair on it.  I LOVED IT!!!





Now for the formal introduction.....Meet Tabitha....Alex's new nurse!!!!   We are SO excited and happy to welcome Tabitha to our family!!


Tabitha's been with Alex for the past few weeks and it's been awesome!  She's so enthusiastic to learn all she can about Alex and is so eager to help her in any way she can.  It's really obvious that she WANTS to be here with Alex.  She wants to incorporate all of her therapy and details from her school schedule at home.  Today when I was trying to get a picture of the two of them Alex kept kissing her.  I love that she's forming such a connection with her.  We are so happy that she's with us, and we are SO looking forward to a LONG, LONG relationship with her!

Tuesday, February 22, 2011

Two Things I Learned Yesterday

One, I need to take a CPR class.  Last night Alex was eating dinner and Ronica, her respite worker was feeding her.  I was in the living room and heard Alex making a sound I've never heard before so I walked into the kitchen and saw her face was as red as a fire truck and she was obviously choking.  Ronica was hitting her on the back and when I ran over to her it was clear she wasn't getting enough air - tears where streaming down her face and I ripped her out of her seat, turned her over the back of her chair and started pounding on her back.  She started coughing and was getting air again, but I tell you what - she has not stopped my heart like that in a very long time.  After it was all said and done Aaron and I were discussing the fact that I have no clue how to do the Heimlich maneuver, so I'm researching classes TODAY.

I'm not sure if she was upset about choking, or if her throat hurt after that or what the problem was but about 10 minutes after we put her down to bed she was crying - really crying - twisting around in her bed, biting her arm (universal sign for her that she's frustrated or in pain) and was really ripping at her feeding tube (another universal sign for her that something's bothering her).  Alex was a real tough baby - cried ALL the time and the only thing that would calm her down was walking the room with her and patting her butt.  Since about the age of 3, and the time she got her Sleep Safe Bed, she has LOVED going to bed.  She loves being in her big bed and does not want anyone in there with her - it's her "I'm chilling out, leave me alone time" I suppose.  If you try and lay with her she puts her arms out to push you away, or will pull your hair, grab your face, etc. so it's been a very long time since I've even thought about laying with her.  Well last night since she was so upset I climbed into her bed, scooped her up and held her and instictively started patting her butt.  She calmed down, a lot, and just laid in my arms wit her head on my chest for over an hour.  Occasionally she would look up at me, rub my face and smile. It made me realize how I really missed cuddling with her and how big she's getting.  Although she had been so upset, and the earlier events had left me a bit frazzled, it was the most peaceful hour I have had in a long, long time.  I sat there reflecting on the last nine years, how so much had changed - how she's changed so much and changed US so much -  and just how lucky I was to be snuggling with her in my arms.  It was really one of those moments that I thought my heart could possibly explode with the amount of love I have for her.

Wednesday, February 16, 2011

Valentine's Day

I hope everyone enjoyed Valentine's Day.  Zach was very excited to share (and receive) Valentine's from his classmates and was super excited to make his teacher a card. Wish I would have taken a picture of it, but on the inside he drew a field of flowers and drew his teacher, complete with the jewelry she likes to wear.  Very cute.  He was so excited when he came home and saw his Valentine's from us...



My poor Beans on the other hand did not have such a great day...

This is pretty much where she spent her entire day and had no desire to check out her Valentine's Day presents... 

She's had a bad cold and felt all around miserable.  On Sunday she didn't even want her beloved Papa near her.  Clearly she felt bad if Papa couldn't even get a smile!

I don't give Aaron much blog time, but I figured since it was Valentine's Day I would just comment that I feel really lucky to have a guy who loves me the way he does.  Don't get me wrong, it isn't always sunshine and roses, but after 11 years of marriage, he still does little things that make me feel appreciated and loved.  I have no doubt that he truly loves me - in all senses of the phrase "for better or worse".

Wednesday, February 9, 2011

Physical Therapy

The way my schedule has been lately, I have not been able to get to a physical therapy session for Alex in a few weeks.  I typically get there just in time to pick her up.  Yesterday I was able to be there for her entire session and it was, in my opinion, one of the best sessions she's had in a long, long, long time.  There are three videos that Alex's new nurse, Tabitha, (a formal introduction will come soon!) took with her cell phone.  They are only a minute long, but each one shows just how great she is doing in each area.

This first one is of her going from side sitting to back up straight.  Every time she sat back up it was for a kiss - and not only was that exciting, but her focus and concentration on me was incredible - which I am attributing to her new regimen of cod liver oil.


video

This next one is of her standing.  Every time Shannon told her to get her bum back on the wall, she did it - every time!  I've never seen her stand so well!!

video

This last one makes me cry every time I watch it.  She's "WALKING" - without a walker!  She's holding onto my hands and Shannon is giving her support from behind. 

video
HOW EXCITING WAS THAT?!?!?!?

Tuesday, February 1, 2011

Benefit for Alex

Our amazing family in Niagara Falls, New York is putting a benefit together for Alex in March.  I know I'm starting to sound redundant at times, but we are so, so blessed when it comes to our family and the support they give us with Alex.  Aaron's family put together an incredible, successful benefit for Alex three years ago to help with the financial costs of her therapies.  Her intensive physical therapy and her hyperbaric oxygen therapy costs were covered 100% from the proceeds of the benefit (both totalled way over $25,000 and were not covered by insurance).  Not to mention the fact that Alex (OK, and us as her 'entorage' were treated like royalty for the entire time that we were there).  I wish I had been blogging at that time so I could have recounted all of the details that were so thoughtfully planned out, but it was an AWESOME time (despite the fact that we had to call 911 about 5 hours before the benefit and Alex had to be transported by ambulance over an hour and a half away to a Children's Hospital and we were over two hours late to HER OWN benefit!  But what would life with Alex be without a little drama?!?)  Every Tuesday, since the beginning of January, the benefit committee meets in Niagara Falls and I so look forward to the phone calls and updates from the meetings.  There are about 50 people on the committee pulling this together.  FIFTY....and almost none of them have actually met Alex....is it me, or is that just amazing?!? 

I look forward to posting a lot of updates between now and March 19th (did I mention how EXCITED I am?!?)  In the meantime, here's a little brochure that's been put together about the benefit.  If anyone would like to donate, or buy a raffle ticket (shameless plug, I know), please let me know!!!