Wednesday, December 31, 2008
Sunday, December 28, 2008
Allie Bean and her cousin Abby opening one of her presents
Tuesday, December 23, 2008
One pretty cool thing she's started doing...yesterday we had a follow-up appointment for her back brace. While we were waiting I said Alex, give me five if you're excited about Santa coming - and she gave me five. I asked her, give me five if you had a good day with Miss Audretta - and she gave me five. I asked her, give me five if you love me - and she gave me five. Then I said, give me five if you love me more than Daddy (shameless, I know!) - but she wouldn't give me five! So I said, give me five if you love Daddy more than Mommy - and she wouldn't give me five! So finally I said, give me five if you love us both the same and she smiled and gave me five!! Today her hair was a mess and I was talking about cutting it - so I said Alex, give me five if you want Mommy to cut your hair and she wouldn't do it - so I said give me five if you want to keep it long and she smiled and gave me five. Fifteen minutes later I asked her the same thing and again, her responses were the same. So I think I may have found a new way to communicate with her and that's really exciting!!!
Thank you so much for all of you that prayed for her and sent us encouraging e-mails - we appreciate that more than you know. She's resting peacefully and Zach is with my parents and his cousins for another night, so I'm going to finish up some last minute wrapping and calling it an early night.
Sunday, December 21, 2008
Wednesday night Zach had his show and sang his little heart out...here he is in action, and another pic of him and his best buddy Aidan...
Thursday Alex's class had a party and the parents were invited...Alex's teacher made her a beautiful ballerina pillow and her friends in her inclusion first grade class (basically she gets to be included with "typical" first graders in music, art, lunch, etc.) made her a scarf...not shockingly, I was brought to tears that they thought of her and wanted to give her a gift.
I will say that I was very proud of myself as I finished my Christmas shopping. If you've been following the threads here you might remember in her birthday post that I mentioned I had dreams of Easy Bake Ovens and Barbie Dolls and felt sad that I still shopped in the infant section for her toys....well as I was shopping I thought to myself...why can't she have an Easy Bake Oven?!? She's doing so great eating, and I can work on fine motor skills helping her stir, and Zach can help her with the oven part...so I'm thrilled to say that I actually bought a gift for her that said for ages EIGHT and over!!!!!!!! Whoo hoo!!!!!!
We're gearing up for her MRI's on Tuesday morning, so if you would say a prayer for all of us, we would be grateful.
Monday, December 15, 2008
This past week was kind of a tough one and I got caught up in all I had to do and struggling to fit everything in between dr. appointments, therapy appointments, obligations and life in general. On Friday as I sat down to go through the mail there was an envelope addressed to Alex, and inside was a letter to me from Beth's mom. The letter stated that their family had decided this year not to exchange Christmas presents and to take the money they would have spent to adopt Alex as their angel, in memory of Beth. I cannot put into words all of the emotions I had going on reading the letter. I cried for Beth, I cried for her family, I cried for Alex and I cried because I was truly, truly touched beyond words by their kindness. As hard as it is to care for Alex, God has blessed us time and time again, but I sometimes loose sight of that.
So to the McJunkins, Howard and Herzwurm families, thank you. Thank you for your incredible generosity and thank you so much for reminding me that there really are angels among us.
Wednesday, December 10, 2008
Thursday, December 4, 2008
I leave there and know that I have to run an errand - I had already picked Zach up before her appointment so I was going to just run to Target quick because Alex was out of food and Zach has a Christmas Mother present that's due. The more I think about the appointment as I'm driving the angrier I'm getting. We get to the store and I HAVE to ask this...WHY do people think that the handicap spots are extra spots for the shopping cart return? Does the big blue handicap sign LOOK like a shopping cart return? I mean seriously, as if the people that are going to need that spot are in the position to actually have to clear all the carts so they can park in "their" designated spot. And it's not just today because I'm already in a pretty cranky mood, it's ALL the time and it has become one of my biggest pet peeves. Even if I don't have Alex with me and I park in a "normal" spot, I always collect the carts from the handicap spots I pass before I go into the store because they shouldn't be there in the first place. Sorry I digressed...any way, at this point Zach has fallen asleep, great. I'm unloading Alex, who is connected to her feeding pump, and of course, when I connected her in the parking lot at the hospital after her appointment, I connected her in the way that I have to totally disconnect her so I can get her out of the car seat because the tubing is looped around her car seat strap. Twenty minutes later I have her in her wheel chair and now I'm pushing her and lugging a 40 pound sleeping four year old. Why I'm a glutton for punishment and didn't just give up and go home then I do not know...I always think "I got this"...and in hindsight realize I probably didn't make the best decision...but oh well. So I run in, pushing Alex and dragging a shopping cart behind me...as I'm getting Alex's food she has a complete manic attack and is screaming/laughing at the top of her lungs and pulling her hair out, Zach's whining about how hungry he is and at that point I give up. I check out and start lugging them back to the car. As I get to my car there's a boy collecting the carts who obviously has special needs himself and he looks at Alex and says...she's special, I can tell. And I said yes, she is, she's very special. And he said, well at least you have her and she didn't die. I don't know why but I drove away smiling and thanking him for putting my day in perspective.
My night hasn't gotten any better, Zach is trying my patience like nobodys business, he's also apparently lost his listening ears, and Alex has been a total crank. My head is about to explode so I'm going to crawl into bed and thank God this day over and pray it's a better one tomorrow.
Tuesday, December 2, 2008
Alex's Orthotist, Paul, was actually quite funny about her brace. It's a new design and pattern and Alex is the first in the area to have this type of brace - so he was very excited that she's the little proto-type for this brace. We'll use it anytime she's doing supported sitting, or going to be in her wheel chair or stroller for long periods of time to help with her positioning. We wont use it during standing or walking exercises since we want Alex to use her trunk muscles and strengthen them as much as possible. If she were to wear the brace all the time, she wouldn't work those muscles and her tone would just get worse, if that's possible! :)
So here's the fashion diva in her new brace...
Saturday, November 29, 2008
Sunday, November 23, 2008
Sunday, November 16, 2008
Zach meeting his great grandma D for the first time!
The "DePasquale" clan
Me and my Grandma
One last kiss
The kids did SO awesome all weekend with all of the driving we had to do - I am SO proud of them.
Thank goodness for the DVD player...I think Zach watched 7 movies!
Quick update on Alex's MRI's...her neurologist does want to have her brain done, so they have both been scheduled for December 23rd at 6AM...uggh. Not exactly how I want to spend two days before Christmas.
within 2 minutes he fell asleep on the floor waiting for me...obviously it was a long weekend :)
Thursday, November 6, 2008
Tuesday, November 4, 2008
I love the way she looks at her Daddy
Alex wanted no part of this picture - but we did try!
Papa's girl...her most favorite person
MeMe and Papa
Today we had PT and her thera togs arrived so she will start wearing them again every day - basically it's a compression suit that makes Alex aware of her body. Tomorrow is a big day - we go see the dr. again about her scoliosis. It's been about six months and we know the curve has gotten worse. So I'm anxious to see how much worse and what the next steps are. It's actually starting to impact her in a pretty big way. Alex has always shown a right hand preference - but that's the same side her curve is on and now she's starting to do almost everything with her left hand. I think it's too much work for her to lean away from the curve to try and use her right.
Oh, two more pics :0)
Tuesday, October 28, 2008
Wednesday, October 22, 2008
This weekend was hard as a single parent - Aaron was gone on his semi-annual four wheeling trip. He left Wednesday and didn't come back home until Sunday...ugh! But we muddled through and had fun by ourselves! Saturday we went bowling with our neighbors Noreen, John and their son Sean. I do believe that Alex has a crush on Sean! The boys were so sweet to Alex the entire time we bowled, helping her every time she was up. I'm embarrassed to admit that Zach beat me (or should I say everyone beat me?!?) the first game, and Alex beat both the boys the second game! I love the ramp that they have there so she can bowl! She had the best time - laughing every time she pushed the ball...and she sat so calmly while everyone else had their turns just watching. Definitely something we will go back with her to do!!
Alex can't take her eyes off Sean!
Noreen, John & Sean
Zach & Sean
Saturday, October 18, 2008
Tuesday, October 14, 2008
Tuesday, October 7, 2008
Aaron and Zach before we go see the animals
Alex trying really hard to get into that $6 bag of cotton candy!
Alex and the winning elephant!
Thursday, October 2, 2008
Tuesday, September 30, 2008
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
Aaron and I are off to Vegas Wednesday (me for work, him for fun!) so I wont be posting again until sometime next week!
Thursday, September 18, 2008
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...