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, September 30, 2008

Back from Vegas!

We're back! I had such an awesome time in Vegas! (You might not get the same kind of enthusiasm from Aaron, but that's just because he doesn't like parting with his money!) I'm not much of an architectural person, but I could not get over the hotels there, one was so much more impressive than the next...Cesar's had a mall double the size of any I've ever been in, MGM Grand had a 9 MILLION dollar lion habitat with real lions, New York New York had a roller coaster, the Venetian had gondola rides, I mean, seriously! We went with our friends Jerry and Dara (who you can never have a bad time with!) and had the best time sightseeing, going to Red Rock Canyon, shopping, eating and gambling...it really was an experience and a place I hope to go back to!!

The kids did great while we were gone - I know my parents are exhausted! The house was immaculate when we got back, there wasn't a piece of laundry to be found, my dad and Zachary planted all of my Fall flowers in front of the house - on top of keeping up with the crazy routines around here. Even Max (the kitty) was on medicine and had to be kept up with!

We got in late Sunday night and Zach had fallen asleep 10 minutes before we got home so we didn't get to see the kids until Monday. When Alex woke up and I went in her room she looked up, then realized it was me and started yelling and flapping her arms. When I picked her up she hugged me, pushed away so she could look at me and then hugged me again - it was priceless. Zach was so excited when he got up too. It's been hard getting back in the routine - Alex even missed the bus yesterday morning! :)

Alex had Physical Therapy today and when I picked her up from school to head to our appointment, Audretta (her nurse), said she had the best day...she said she sat in front of the computer at school for FIFTY MINUTES and used a switch to activate a computer program ALL BY HERSELF for the ENTIRE time!! That is huge. I swear her concentration and focus has changed so dramatically since Florida. She said she also had art class today and reached out to pick the colors she wanted to paint with. Yesterday we had Speech therapy and I had Zach home with me (we're both sick :( ) so I didn't stay in the room with her because Zach is a huge distraction to Alex. When her session was over Beth said she used her switches with 100% accuracy. I am SO proud of all she's doing!!!!

Today at PT we started out working on her sitting - she's always been a "scooter butt", but lately she just doesn't want to sit at all. So while she was sitting they worked on her activating a See N Say toy. The video was too large to import here, so I'm including a You Tube link. Shannon and Sandra (the therapists) said Alex is now primed for Vegas as she's got her "slot pulling" arm going!! :)

Monday, September 22, 2008

Part II - "More Please!"

We're working really hard on feeding, and while we have a long way to go, I'm so proud of the progress she's making every day, not only with her switch, but with actually swallowing her food. She's genuinely showing a huge interest in food. Yesterday we went to my parents house for brunch and she was sitting at the kitchen table with us. When my mom put a platter of food on the table, Alex got so excited she knocked over Zach's orange juice. When we have dinner, it's impossible not to give her a little something because she watches every single bite we take. So I'm prepared for the long haul in the time it's going to take to continue to strengthen her muscles and get her swallowing coordination down, but she's showing me every day that we will get there...I just need to have patience, and when she does it, we will have a HUGE eating party for her (I hope everyone likes Gerber's Stage 3 Vegetable Beef!)..kidding :)

Aaron and I are off to Vegas Wednesday (me for work, him for fun!) so I wont be posting again until sometime next week!

Part I - Fun at Therapy

We had speech therapy today with Beth and some of the things she works on other than eating and oral motor skills is purposeful play, and cause and effect switch toys (if I hit this, this happens). So Beth has this giraffe that hooks to a switch that she introduced about two weeks ago. After the giraffe walks for a bit, it makes this funny noise that just CRACKS Alex up...I can't help but laugh watching her...she cracks me up! Here's a video of her laughing at the giraffe...

Thursday, September 18, 2008

New Emerging Skill

Last week at speech therapy Alex actually sucked on a straw...it's not actually a conventional straw, but a bottle made out of a hair dye bottle with tubing as the straw...but it was the first time she has sucked anything other than her thumb (which is new too) in over 5 1/2 years! We've been working on it all week so I was excited to go to speech therapy but her therapist had to cancel this afternoon. So Alex and I had our own therapy session and here's the first "attempt":

I then got the brilliant idea to add blue Kool-Aid (what was I thinking?!?) to the bottle so I could actually see how much she was sucking in...her face when she sucked and got that new flavor was priceless...I wish I had my camera on for that :)

We are still working on the suck and then swallow process, but she's trying hard! Here's one more with the Kool-Aid...(warning if your volume is up - she squeals a little bit!) I did eventually get a video of her sucking twice and swallowing, but it was too big to upload here...

Wednesday, September 17, 2008

Med Changes

This is my first time at a true blog attempt - so please bear with me as I figure out what I'm doing and tweak it as I go! Before I start, a big thank you to Christy who helped me set this up!

Now on to the actual post!!

When we were leaving Florida, the Dr. there suggested we try and wean Alex off of some of her meds. The reasoning is that the purpose of the hyperbaric treatments is try to heal and awaken neurons in Alex's brain and some of the meds she is on suppresses those neurons. So we met with her neurologist on Monday and we discussed weaning. Two of the meds specifically are Clonodine for sleep and Tenex for her "manic" behaviors. Monday night we started giving her 1/2 a pill for sleep and she seemed to do just as well. The Tenex on the other hand is another story! To give a little insight, Alex gets VERY excited over certain things and cannot control her excitement. She squeals and yells so loud that glass could break, she pulls her hair and she laughs uncontrollably - but I'm all for her being more alert. Well, careful what you wish for, right?!? She did great at school yesterday and today being on half a pill of Tenex. So when she got off the bus I put her right in the car to head out and do some shopping. The car trip to the store was an experience in itself - I have never seen her so out of control! Once in the store she did fairly well, but there were a few screams throughout the store that I swear the mannequin's cried :) I've stopped looking around at other people's reactions, I mean it is what it is and I can't take it back so I don't want to see disapproving looks, or that same look on peoples faces after she's scared them half to death! Is that wrong? I just don't feel like I need to acknowledge them staring and apologize for something she clearly can't help.
Anyway, we finished up our shopping and went to pick Zach up from daycare - and she was clearly excited to see him.

I ran out of baby food today (of course I didn't realize it until I went to the pantry to get some), so I opted to feed her some chocolate pudding while Zach and I (or should I say while I ate my dinner...) Here is her happy chocolately self!

So that's it for my first true post!!

Tuesday, September 16, 2008

So Here It Goes!

After the updates from Florida I got so many suggestions that I start a blog...so here we go!