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 30, 2010

Social Development Testing and Nutrition

It's been three years since Alex has had any Social Development testing, which is basically a test to measure her up to 'typical' peers. How does she communicate, can she dress herself, can she say Mama or Dada, can she pick anything up with just her pointer finger and her thumb, can she sit by herself for at least 10 minutes, can she feed herself, can she, can she, can she, fill in the blank. The test needed to be completed before we have her upcoming IEP. The psychologist who did the test was just as nice as she could be, but I get seriously depressed at these meetings. It's not that I had any great epiphany that suddenly I have a handicapped child, but I see Alex as Alex. I revel in the things that she can do, and I marvel at how far she has come, but to see on paper the things that she can't do that even a toddler can do, suddenly makes me so sad for those things and it's like a mourning process starts all over again. Sigh...I leave that meeting seriously sad and have to go straight from there to the feeding clinic for her weekly feeding therapy, and I'm starting to get a little excited because we are also supposed to meet with the nutritionist to see how she's gaining, and to talk a little more about transitioning her from her tube feedings to possibly pediasure in her squeeze bottle. We get there and as we're walking back to the feeding room, the receptionist says...."oh, I'm really sorry I forgot to call you, but the nutritionist is out today...oops." I can tell that she can see the look on my face and knows that I'm not happy. I mean how inconsiderate, I had a meeting at her school, rushed to get her there on time for the appointment, had to make arrangements for my mom (not that she minded) to pick Zach up from school and keep him for 2 hours, and all you have to say is oops? Seriously, that just doesn't really cut it. So, I have nothing new to report on the nutrition side of things. Needless to say, yesterday was not one of my better days.

Really quick, Zach had a wedding to attend today. His Kindergarten class is celebrating the wedding of Mr. Q and Ms. U because Mr. Q never walks alone and needs a partner, how cute is that?!? They were all invited to dress up for the special occasion, and we all know how Zach just LOVES to get dressed up!!
And this one just cracks me up because he lost his second tooth this week and I think he looks so stinkin cute without teeth! :)

Tuesday, April 27, 2010

Future in TV???

On Saturday, Jennifer's fiance, who is a Director for NBC 12 News, invited us to the station after the morning news broadcast for a tour. Brad literally gave us the grand tour and we saw every square inch of the station. It was SO much fun...I felt like a kid myself seeing how everything worked and how much goes into producing the news!!!

Zach and the green screen...

Zach reporting on the weather - in case you're wondering how you should dress, it's going to be "cloudy with a chance of tacos"!


Sissy reporting on the weather...probably going to be a little wet! :)


Brad letting Zach push all of the controller buttons...



Sissy working the tele-prompter desk...


Hanging in the VIP "Green Room" with Brad...



Getting to sit in the actual chairs on the set...



Seriously, does Zach look like a natural, or what?!?



Top news story :) ...


Checking out the sound booth...


Playing with all of the NBC sounds...


Sissy and Elmo reporting the news!



Thanks so much Brad, we had a great time - Zach kept telling everyone he was on the news, he loved every minute of it!

Friday, April 23, 2010

2010 Little Feet Meet

Today was the second annual Little Feet Meet sponsored by the Special Olympics Virginia. It was a beautiful day, and just like last year, the events of the day make me feel so proud and honored to be Alex's mom. Alex participated in a wheel chair race and a tennis ball toss. The morning started out rough for her, but by the end of the day she was as happy as could be and enjoyed all of the excitement. It was an awesome day of seeing old friends and meeting new ones.

A special thank you to Alex's teacher, Miss Lesley, her nurse Audretta, her classrom aides, Mrs. Susan and Miss Ann, the 5th grade helpers, Jennifer and her fiance Brad and all of the students from Freeman High School who volunteered for making the day so special.


Here's a video from our day...


video

Sunday, April 18, 2010

Another Big Moment for Zach

Today the training wheels came off Zach's bike and he learned to ride a bike! He's so proud of himself. What a week he's had!





Last night he also went on his very first camping trip with Aaron and the Holton Boys. He loved every part of it. Before they left he packed his "luggage" and must have packed almost every toy he could cram in there - "just in case". They made s'mores on the campfire and he thought it was the "best sandwich" he's ever had. He can't wait to go back again.

Saturday, April 17, 2010

I feel the need to share

I was born and raised in New York...moved to Virginia about 15 years ago and totally found a love for country music. My New York (and some Virgina) friends have often made fun of me for this discovery, but I've found the songs and lyrics are so raw and emotional. An artist that I've loved for a while, Collin Raye, made a song about his granddaughter Haley who suffered from an undiagnosed neurological disorder. I've made a few video montages with music and I recently found the song "She's With Me" by Collin Raye that I'm planning on using for our upcoming Angelman Syndrome Walk. I've watched the video about 100 times - his granddaughter reminds me so much of Alex and his words totally encapsulate my thoughts and feelings. Tonight, after watching the video again, I learned that his sweet Haley passed away on April 3rd and I can't stop crying just envisioning her and feeling their pain. You'll hear the song again in my video from the Angelman Walk on May 15th, but I just felt like I needed to post his video (click on video to watch the video) here tonight and celebrate and mourn Haley.

Thursday, April 15, 2010

The Tooth Fairy is coming for a visit!

I thought for sure she was actually going to visit last night. The darn thing was so loose! I tried wiggling it out, Jennifer tried wiggling it out...


...and even Zach tried to get it out himself...


but then it started bleeding, he freaked out and that was the end of that! I did manage to get him to smile one more time and told him it would probably be his last picture with all of his teeth...and it was!


It finally fell out today at school. At first I was a little disappointed that it happened at school (ridiculous, I know!), but they made a big deal about it...he got a "tooth certificate" from his teacher and when they sent him to the clinic he got a little tooth box to put his tooth in and got a sticker to wear that said "I Lost A Tooth Today". He was so excited and felt pretty special.

Last night we made a really cool tooth pillow so the Tooth Fairy would know exactly where his tooth was...and if I do say so myself, I think it turned out cute!


So here's my new toothless man...


Putting his tooth into his pillow for safe keeping....

Pillow safe and secure and ready for bed!


Yes, I guess it's obvious that losing the first tooth has been a pretty big deal!

Wednesday, April 14, 2010

Slacking!

Such a slacker I've been blogging! Our routine with us being on vacation and then the kids being out of school for spring break is completely off! So let's see...Alex finished Intensive Physical Therapy the week that we were gone and she finished with flying colors. Monday at school her nurse called me to say her school physical therapist was amazed because for the first time at school, Alex sat unassisted for over 7 1/2 minutes! And I know it might not make sense, but I swear her cognitive skills are sharper. I've weaned her off almost all of her medication and I'm sure that probably has something to do with it as well because she's not all foggy from the meds, but it's awesome to see her so focused. We're working with her with eye gazing to make choices and she's really getting it. We offer her two pictures to make choices for what she would like to play with, read, etc. - she looks at both pictures and then settles her eyes on the object she wants, and if she's not interested in either, she makes it clear by looking up and not focusing on either picture. Obviously we have a long way to go with this, but it's pretty cool to have her be able to communicate in some way. On another note, for the past week she's gotten really bad with using her squeeze bottle for drinking. She was taking up to 4 1/2 ounces at each feeding, but now she barely gets an ounce. She's totally pooling anything I put in there and she's even to the point where she pushes my hand or the squeeze bottle away. We've all been suffering the last few weeks with allergies, so I'm not sure if her throat is bothering her from that, or if she has something else going on so I'm just going to keep on eye on it and will bring her in for a checkup if it continues for much longer.

We had an awesome time this past weekend with lots of friends. Sunday we were at a bb-q with our neighbors and I shot this picture of her that I just love.


I'm really excited that next Friday is the second Little Feet Meet that Alex will participate in. The Little Feet Meet is a division of Special Olympics and if you click on the link above it will take you to a video of last year's event. It's an awesome event and I can't wait to participate again this year.

Zach is doing great - he started Taekwondo lessons on Monday and is loving it. He starts an art class this afternoon as well so he's keeping real busy. The big news is that we are days away from losing our first tooth! He is so excited he can barely stand it! Last night while we were eating dinner he said, "Look, Mom!" and he had his tooth laying completely down. Ick!

There's more to update on, so hopefully it wont take me another week to blog!

Tuesday, April 6, 2010

I'm Back!

Sorry for the long delay between posts! Aaron and I took a MUCH needed R&R vacation to Cozumel, Mexico. It was so what the Dr. ordered. We went with my brother and my sister-in-law and totally relaxed, took a catamaran sunset boat ride, slept in hammocks on the beach, snorkeled, shopped, read by the pool, ate great food, enjoyed the crystal blue waters, the vegetation (side joke) and each others company. It was an amazing week. Few pictures from the trip...









My mother-in-law flew in from Niagara Falls and stayed with the kids for the week and did amazing job keeping everything organized and running the kids to all the places they needed to be. Despite missing us, the kids did great. My parents came over to visit during the week and stayed Saturday and Sunday and Alex got her Papa fix. I've said it before, but it's so great having such a supportive family and one that actually pushes us to get away and recharge our batteries.

Now, back to reality!!!