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.

Saturday, November 29, 2008

Much to be Thankful For

Happy Thanksgiving! First my little "funny"...I was cooking for Thanksgiving and having my parents, brother, sister-in-law and mother in-law. My bird was a pain from the get go and despite being in the fridge for five days, was still frozen Wednesday night. So Aaron and I put the bird in the sink at midnight to soak. I woke up Thursday morning and felt TERRIBLE...knew I had to get the bird in the oven so I went down to the kitchen not at all with it but prepped the bird and got him in the oven. An hour later the house started smelling like Thanksgiving, I basted the bird a few times and six hours later I take him out of the oven...only he looks weird - I can't put my finger on it and call my mom to tell her he looks funny and his legs look a little weird. She assures me it's fine. Well, she gets to my house about an hour later, takes the foil off and immediately says DONNA! You cooked the turkey UPSIDE DOWN! UGGGGGGGGGGGH! I was SO upset and couldn't believe I had done that!!! After everyone was done laughing about it and getting in their countless upside down jokes...my dad flips him over (he did not look pretty at that point!) and put him back in oven to brown him again. I should have taken a picture, but even though he wasn't the Norman Rockwell vision of a turkey, he was the moistest turkey we had ever eaten and the rest of the spread was delicious! :) My sister-in-law called me yesterday to tell me that Chef Wolfgang Puck always cooks his turkey upside...so I guess I shouldn't beat myself up too much??? At least we made a great memory, right?!?
We have lots to be Thankful for this year...Alex is continually making great strides. We are blessed in so many ways and though I've said it before, we are so thankful for our amazing family and circle of friends.

Sunday, November 23, 2008

Happy Birthday Sweet Girl

Seven years ago my life was changed forever and we were blessed with Alexandra Elizabeth Hayes. It's hard to believe it's actually been seven years. Roads we've been on have been long and windy, but our journey is still so new in some ways. I'm usually a little sad around Alex's birthday, or maybe it's a little more grieving for what I thought was supposed to be. Growing up I loved dolls and all things girlie - when we found out we were having a girl, I had so many visions in my head of the things we would do together and the fun I was going to have reliving Easy Bake Ovens and Barbie Dolls. Instead, I still shop the infant aisles looking for the latest and greatest toy that will sing and light up. For some reason though, this year was different. Yes, I got a little sad when I passed the baby doll aisle and her birthday presents are 6+ month toys, but this year was easier. As I looked around the room at the little party we had for her today, the room was filled with so much love for her. She is loved by so many people. She has the best family in the world - and I have met some of the best friends that I never would have met if it wasn't for her. Alex is happy, and Alex is loved beyond words ~ at the end of the day, that's what is important. So happy birthday my sweet sweet girl...Mommy loves you more than any words can say.

Sunday, November 16, 2008

Birthdays and a LONG Weekend!

Aaron's dad had a birthday on the 8th, his grandmother turned 89 on the 14th, my grandmother turns 94 on the 18th, Alex will be 7 on Sunday and my dad will be the big 65 on Sunday...whew!!! There was a little party for Aaron's grandmother on Saturday that we wanted to go to, but the drive to Albany is too far for Alex (she refuses to sleep in the car..she never has...) and the airline tickets were over a thousand dollars. It so happened that my parents were heading up to New Jersey this weekend also to see my grandmother, so we tagged along. I have not seen my grandmother since my wedding (over 9 years ago) and she has never laid eyes on my children...how terribly sad is that? She prays for Alex every single day and she told my dad the one thing she wanted to do before she died was to hold Alex. She is pretty unbelievable - she still lives completely alone and gets around with her walker like nobody's business! I told her today she didn't look a day over 8o :) I was so glad we made the trip...when we first got there she wanted Alex right next to her and she cried while telling Alex how much she loved her and how she prays for her...and Alex actually reached up to touch her face. It was so obvious how happy my grandmother was to see the kids and how much the trip meant to her. So we were gone 34 hours and spent over 15 of those hours in the car, but it was really worth it.

Reaching out for her great-grandma's face

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!

Look at those eyes - one tired little girl

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.

I'm exhausted and heading to bed...poor Zach - I promised him I would read him a story right after I checked my e-mails...and, well...

within 2 minutes he fell asleep on the floor waiting for me...obviously it was a long weekend :)

Thursday, November 6, 2008

Yesterday's Dr. Appointment

So we went to see Dr. Atkins yesterday about Alex's scoliosis and some other issues. What an ordeal. First, Alex thinks the funniest noise in the WHOLE world is the sound of the paper that they put down on the examining tables...so that started one of her manic episodes. Laughing, pulling her hair, etc. By the time the Dr. was done examining her the paper was literally shredded, I felt like I was dealing with an octopus! Then off for x-rays - in her chair, out of her chair, in her chair, wrestling with her, out of the chair, in the chair, out of the chair, into the car...I was sweating when we left!!

The end result is that in a lying down position the degree of her scoliosis has not changed...that's the good news. The bad news is that her postural curve, meaning how she sits, has gotten much worse. She leans so far to the right that it's affecting how she uses her hands. So next Friday we go to have her fitted for a brace that she will wear while she's in her wheel chair or stroller, or for any other sitting activities. We don't want her in the brace the entire day, because her trunk is so extremely weak that she still needs to be working on strengthening those muscles while she's in her stander, walker, etc. The other half of the appointment we talked about how Alex has lost some of her skills. For a few months Alex was doing amazing with her walking - taking steps without prompts in her walker, weight bearing for long periods of time, sitting, etc. Now she refuses to sit independently, she wont weight bear for longer than a second and she wont take any steps in her walker. So she's being scheduled for an MRI of her spine to see if there's been any damage, and she also wants me to talk to Alex's neurologist and have an MRI of her brain done at the same time to see if there have been any neurological changes. The part I hate is that she has to be completely sedated and because of her neurological issues, she's at greater risk for things to go wrong. Dr. Atkins is a wonderful doctor and she truly sees the whole big picture - worrying if I'm lifting correctly, if I'm getting enough rest, etc. but she did mention something about the urgent need to get her weight bearing because if she can't start transferring herself (even with support), that as she gets bigger and heavier, alternatives to look at were basically to move her into some place - granted she was referring to year's away, but it's just not an option I would ever entertain - just the thought of her not being down the hall from me terrifies me. I'm trying to keep my glass half full, but I got total flashbacks to five years ago when all we were doing was testing, testing and more testing, the projections were always worse case scenarios and it was never ending. I had a pity party for myself and cried on the way home because sometimes this roller coaster ride is just too much. Her cognitive skills right now are getting so strong and we were so happy with all of the motor skills she was acquiring too that it just seems so unfair that it was so short lived. I know God has a plan and will get us through, and I hope months down the road we will look back in hindsight and know why...every time we've dealt with blows, we've been blessed in some way.

Tuesday, November 4, 2008

Where do I begin?!?

Things have been pretty hectic and I swear I just don't know where the time goes! I guess I'll start with Halloween..Alex was in a take it or leave it mood. Although she enjoys being outside and seeing everyone, she's been working on getting sick and really wasn't in to it this year. Zach started out strong enjoying himself, but by the last few houses I think he was probably the only kid to ever say "can we be done please? I really want to go home!" Here's my pirate and cheerleader:

My Pirate

Rah! Rah!

I love the way she looks at her Daddy

The next morning we had our neighborhood Fall Festival. I'm on our neighborhood board so I left the house around 1:00 to start setting up. The festival itself ran from about 2:30 until 7 or so...all of the neighborhood kids had a great time - we had a moon bounce, cotton candy machine, popcorn machine, pumpkin decorating, a pumpkin pinata, games, food and on an on...Alex held her own for the first hour or so and then she was done. Lucky for us, my parents had taken a scenic drive to see the leaves and stopped by on their way back to see the kids, so they took Alex home and got her comfortable while we stayed at the party ~ which was a nice treat.
On Sunday we had our family day. Went to church and then back to my parents house for brunch. We took a really nice walk down by the lake where they live...the trees were absolutely beautiful - I have no idea why they didn't just sit on the dock there the day before rather than wasting gas to go up to the mountains ;0)

I love how she's been sitting lately with her legs crossed!

Alex wanted no part of this picture - but we did try!

Papa's girl...her most favorite person

MeMe and Papa

Yesterday was a pretty draining day. Both kids were sick and that's just how the day started. Alex was crying and crying all day - and that is just so not her and her personality. After a trip to the doctors office I had to take Zachary to a prior scheduled appointment to go see a specialist because his feet are pronating (rotating in) and affecting his knees. After that we ran home because it was time for Audretta to leave. Aaron flew in at 3:10 and I flew out because I had a parent/teacher meeting with Alex's teacher at 3:15 which turned out to be the best part of my day. She said Alex is just so much brighter this year, she's getting things so much quicker, she's more alert and interactive. We are really starting to stress communication skills with her and right now are working with pictures and voice activated switches. After I got home from that we had errands to run. After dinner was done Zach and Aaron sat to watch the football game and I went off to the computer to work on some communication boards for Alex. It's my first time using this particular software so at 11:15 I finally finished making a "body parts" board for her. I really want to work hard with her on identifying the parts of her body. The most frustrating thing for me as her mother is to see her cry and be in obvious pain and have no way to tell me what's hurting. They use a similar type of board in her classroom for her to tell everyone how she is feeling - happy, sad, silly, tired, sick, etc...Almost every day Alex picks that she's in a silly mood (very true!) occasionally she picks tired, or frustrated, and it's usually right on with her mood. This year her teacher moved where the silly picture was on the board, and Alex still picks silly...so we know it's not just where it's placed on the board. Tonight I played some computer games with her that they use at school using her switches and she did so well! After that we worked with a lot of yes/no questions. Her homework assignment for tomorrow is if she could dress up and be anything she wanted what would it be...so I printed a bunch of different pictures - a nurse, a teacher, a doctor, etc...I also printed a picture of a ballerina and she picked that every time - I got her yes/no switch and asked her - are you sure you want to be a ballerina?!? And she squealed and hit yes...I changed the position of where yes and no were on the switch and asked her - are you really really sure?!? And she hit yes again! I'm so excited about the millions of things I can do with this program!

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.

Ok, this is a way longer post than I had anticipated! I'm off to New York on Thursday for what I must admit is a much needed Mommy alone time trip.

Oh, two more pics :0)

Zach at the neighborhood party on his FOURTH cotton candy!

Me and my sweet girl