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, March 31, 2009

A Busy Week

It's been an extremely busy week so I haven't had time to post anything. Last weekend Grandpa and Grandma Joan were in town, then Grandma Beverly flew in on Wednesday, and my best friend Dana flew in on Thursday...so we've had a full house. That coupled with soccer and T-ball practice for Zach, dentist appointments, neurology appointments, work, etc., time is just flying by.

Alex is sick right now and we're having some issues with her Mic Key G-tube, so she's not really a happy camper - I seriously doubt we're going to have a good therapy session this afternoon, if we even make it.

One of my new favorite pictures of her:

Tuesday, March 24, 2009

Little Feet Meet

A little post with some exciting news!

The 'typical' age to participate in the Special Olympics is 8 years old. This year the Special Olympics has a program called "Little Feet Meet" for kids who are in Kindergarten thru Second Grade. They can participate in a 25M motorized wheelchair event, 25M wheelchair event, 25M assisted walk, 25M walk/run, tennis ball throw and standing long jump. Miss Bean will be participating on April 24th in her first Little Feet Meet! If anyone's interested in cheering her on, it will be held at Freeman High School from 9AM -1PM!

Tuesday, March 17, 2009

Happy St. Patrick's Day!

Well, although it's Tuesday, I have no therapy news or videos! Apparently Alex thinks St. Patrick's Day is a holiday that she's entitled to rest on, so she was an extreme "Lazy Daisy" as I like to call her. She pretty much wanted no part of therapy today and wasn't budging!!

Although my maiden name is DePasquale, my mother's maiden name is Harvey. She's pointed out to Zach several times that his great grandfather and great great grandmother were from Ireland. (When I was single, my mom would mail me St. Patrick's Day cards addressed to Donna O'DePasquale!) Aaron's family is part Irish too, so we're not just showing our Irish pride just because it's St. Patrick's Day - i
nstead of videos, here are some pictures of my little Leprechauns!!





Thanks to Grandma Joan for our new shirts :)

Monday, March 16, 2009

Zach's First Sleep Over!

Zach had his first sleep over Friday night with his buddy Murphy. Murphy packed his pirate costume, so right off the bat we were off to a good start! Aaron had set up Zach's firehouse tent and the boys were excited they were going to get to sleep in their sleeping bags in the tent. I have to say after Christy and Tom (Murphy's parents) left, I didn't know what to do with myself for the first two hours...I'm so used to being Zachary's constant source of entertainment that with Murphy there it wasn't Mom, Mom, Mom...! Zach finally crashed at 11:15 and Murphy at about 11:30 ~ but they were right back up and playing again at 6:15!

They had such a good time playing together that I have to admit it made me really sorry that Zach doesn't have anyone to actually play with like that on a regular basis - he didn't want to take Murphy home on Saturday!

Murphy's sister Harlie has a lot of medical issues (if you want to read an awesome blog and read about her story you can visit Christy's blog at http://www.lifesinceharlie.blogspot.com/) so being around Alex didn't phase him in the least. Before he left Saturday he went to where Alex was laying in the living room and talked to her and then pushed a few buttons on some of her toys to make her laugh. He looked at me and said - I always make the baby's smile - she likes me! Oh, and right before Murphy left he said he wanted to come back for another sleep over and was looking at the pictures I have hung on our walls and asked if the next time he came over I could have his picture up on the wall too...too funny! :)


The two pirates!


The boys in their tent - how cute are they?!?

Thursday, March 12, 2009

Infectious Laughter!

We started Speech Therapy back up with Beth today at Children's Hospital...Yeah!!!!! Beth's been working on a lot of feeding with Alex but today we decided to just work on cognitive play with her switches. Alex wasn't as on target as we know she can be, but i just had to post these videos of her laughing...I really think she has an infectious laugh! A rain stick is a HUGE motivator for her, always has been. She just loves them. If we're shifting around toys in her basket looking for a toy and just one of the beads happens to move in the process she cracks up like she's just heard the funniest joke ever!


*Volume Warning if the volume on your computer is turned up!*


video


video



An update on the Melatonin...she has slept THROUGH the night the past two nights she's been on it!! In fact, I typically don't have to set my alarm clock because she's always up at 5:30AM or so. But this morning my alarm went off at 6 and I thought I hit snooze, but I actually turned it off (oops!)...so I woke up at 7:07 (her bus comes at 7:12!) in mad fire drill mode, but since it was obvious she wasn't going to come close to making her bus we didn't bother waking her up. She woke up at 7:30!!! The day before I had to wake her up at 6:50 so I could get her ready for school! I only wish I had done this sooner because so far, so good! :)

Tuesday, March 10, 2009

A vent - and more therapy

First my vent! Back in DECEMBER Alex was approved for a laptop and some adaptive software. I've been waiting and waiting thinking any day now it's going to arrive. I finally decided to call the company that was working with the insurance company to order it to find out if she had a tracking number or something since it hadn't arrived yet. I was so not prepared for her to tell me how busy she's been and she still hasn't even ordered it yet. Oh I was SO mad. Four months the paperwork has been sitting on her desk - FOUR months! She proceeds to tell me that she should be getting to it by the end of the week. I think I'll try that with my boss on the next project he gives me and see how far that gets me. UGGH!

Ok, on to therapy...I guess Tuesday's are my day to post lately- and probably because Tuesday is therapy day and has become the highlight of my week!

Today we started therapy with Alex riding a bike!! Again, if you watch, she's doing all the pedaling...Shannon is just holding her hands to keep her hands on the handle bars but is not pushing the bike!! I can't believe how much progress she's making!

video

After bike riding she was hooked up to a light gate to try and get her to crawl. She really isn't doing too well with that because she wants to extend her legs backwards instead of forward, but I wanted to post the video because you can see just how hard she (and Shannon and Sandra!) has to work and how great Shannon is at pushing her.

video

After bike riding and crawling she still had the stamina to walk in her walker again! She was walking in the hallway rather than a room this week, so the angle was harder to video, but you can still how she's still moving her feet on her own!

video

One more thing - Alex's sleep has been terrible the past few months. There's always been quite a bit of talk on the Angelman listserve that I belong to about Melatonin and how it really helps the kids stay asleep (Alex gets a sleeping pill at night to help her fall asleep, but lately it doesn't keep her asleep). Last night she woke up 4 times and she has happy "manic attacks" but screams so loud she wakes the whole house up. So I went to the Vitamin Shop today and bought the Melatonin. I'm really nervous about adding something else to her night time meds so I gave her just 1ML tonight. Within 10 minutes she was out like a light and when I went in to disconnect her feeding she was sleeping really soundly. We'll see how she does throughout the night!

Tuesday, March 3, 2009

Another Physical Therapy Video!

Today was another great Physical Therapy session with Shannon and Sandra. Watching this video makes me so hopeful for the potential of assisted walking. I know it's far in the future, but if I look back to where she was a year, or even six months ago, she's making such great progress. The fact that she's "graduated" to a walker without a seat is HUGE. Her trunk is really getting stronger and when you watch the video, you can see she's really only getting support through her arms, meaning her trunk and "gluties" are doing the majority of the work. I've pretty much been waiting six years to see this. She's working so hard and I tear up every time I watch this and see her taking those steps - I know it's so hard for her.

video

Monday, March 2, 2009

Snow, Snow, Snow!

We FINALLY got snow - yippee!!!! I think we got between 9 and 10 inches - so for Richmond, that's a lot! My girlfriend said she heard on the news the last 'big' (I'm from NY so I use that term extremely loosely!) snow we got was a whopping four inches in 1995! It was so nice watching it fall yesterday and it really was beautiful to look at today. Zach was beside himself and when he got up this morning he literally went to every window in the house to make sure the snow was completely surrounding the house. By 7:30AM he must have asked me 15 times if it was time to go outside and play yet. Here's a few pictures of him loving the first snow day he can remember:







I really wanted Alex to go outside and experience the snow and to see what all the excitement in the house was about, but I knew she wouldn't like the cold snow blowing on her, and it wasn't like her chair could actually make it out in the snow anyway, so we decided to bring the snow to her. We put her hat and scarf on, turned her chair to face the window so she could see the snow, and Aaron went outside and brought some snow in for her to see and feel...she LOVED it!











No school tomorrow, the kids get to enjoy another snow day. Wish I didn't have to go to work - we had a fun day!