Tuesday, December 29, 2009
Saturday, December 26, 2009
First, for those of you that normally get a Christmas card from us, I'm disappointed to say that for the first time in 11 years I did not get my cards out . It wasn't for a lack of trying, but the kids didn't really cooperate in the picture taking process and then I just honestly ran out of time. Maybe I'll get Happy New Year cards out! Here's the closest that I came to a somewhat decent picture!
We had a wonderful Christmas. Alex and Zach truly enjoyed themselves and that's better than any gift I could receive. Alex has had this car that she loves for the past four years. We've replaced it on several occasions because either she's played it until it gave up, or she dropped it so many times that it broke! It's been a few months since she's had one so Santa brought her a new one and the look on her face and the squealing happy sounds she made was priceless!
Zachary is definitely my sensitive soul. I guess he and Aaron had a discussion while I was at work about how some people are alone on Christmas and don't get any gifts. When I got home we ran out to run a few errands and while we were driving home he started to cry. When I asked him what was wrong he said he was very sad for the people who had no families and were alone. Christmas Eve my dad said grace before we ate, and Zach chimed in to pray for those that were less fortunate than him. Today we cleaned out the toys he's outgrown to donate and made a box of videos and books to donate to the local pediatric ward at the hospital. When we were done he said his heart was very happy.
I put together a little montage of Christmas Eve and Christmas Day. The song I picked was Where are You Christmas by Faith Hill. Growing up as a child I have the best memories of truly magical Christmases. We lacked for nothing and you could barely move in our living room on Christmas morning. Christmas Eve we were always at church and the service always seemed to take years because we knew when we got home we could open one present each. Yet the older I got, Christmas somehow seemed to loose a little of it's magic and the song to me represents coming full circle. The magic is back and it's truly about the love of my family, the real reason for the season and the look in my children's eyes and their smiles.
I hope each of you had a very blessed Christmas. Thank you for reading this blog and sharing some of this journey with us.
Saturday, December 19, 2009
Aaron and Abby's dad Jason were gearing up to have their own fun on the four wheelers and the kids couldn't wait for their rides!
With that much snow it was nearly impossible to get Alex's wheel chair outside, so I did what I did last year the one and only time it snowed...I brought it inside to her!
Then she started putting her hands all in it and flinging it all around!
Wednesday, December 16, 2009
Everyone is doing well...Alex is keeping very busy with therapy at Children's Hospital and at home. I have to say, having a child with numerous disabilities makes it really hard to prioritize what you can work on. As far as my wish list for her - walking - check, very important. Sitting independently - check, very important. Chewing - check, very important. Using switches to communicate - check, very important. Swallowing without having food in her mouth, meaning less drool - check, very important. So between 'normal life', school and all of the areas we need to work on, there just aren't enough hours in a day to do it all - and you have to be consistent and dedicate a lot of time to one area so she has time to actually 'get it'. Her physical therapist, Shannon, and I have had a few conversations about Alex the last few weeks and how she really feels like Alex should (and could!) be walking independently with a walker, but she just doesn't want to do it - she's being a bit defiant and a lot of the issues we're having are behavioral...ok A) I guess that's bittersweet - because that means cognitively she's aware of how to be defiant and B) how the heck do I get her to realize that's not ok?!? I will have to try and take a video of her - but when she's not wanting to walk, she will literally take two or three steps and then cross her right leg over her left leg and hold her foot up to her knee - earning her the name flamingo on several occasions. Does she have low tone making it very hard for her to have the strength to constantly stand up and apply all her weight in the appropriate places, ABSOLUTELY, can she do it though? We think she can. Try this experiment - stand up, cross your right leg over so that your right foot is leaning against your left knee....try balancing on just your left leg for a minute or two...that takes more work than actually taking steps. Sigh....this to shall pass and we'll get there. To think of her walking throughout the house in a walker just seems light years away, but then again, so did her eating by mouth and look where we are with that!
Speaking of eating...she had an appointment at the feeding clinic with Children's Hospital a few weeks ago and I was really quite disappointed. First of all, she only gained a half a kilo. Seriously? For as much as she's been eating a half a kilo in four months?!? Very frustrating. The only positive spin I can put on it is that hopefully it's because we've ramped up her physical therapy and she's burning more calories throughout the day. The nutritionist wants us to go back to giving her a tube feeding at night once she's gone to bed. Do you know what disappoints me most about that? The fact that she just got nightgowns for her birthday and I was SO excited that for the first time, ever, she could wear a nightgown to bed because we didn't have to worry about her extension tubing. Ahhh the simple things some people take for granted! My other frustration with the appointment is that I feel like the feeding clinic is constantly dropping the ball with us. For the last year we've gone in five times for one kind of evaluation or another, and they keep telling me she's a great candidate for the feeding program and that they will call us as soon as there is a slot open, only they've never called and I've spoken to other people who went in for appointments long after we did and they've gotten slots. We'll I've heard that story four different times now, and I feel like I'm literally wasting my time and energy going there. I have such a bad taste in my mouth for them that I'm trying to separate my feelings for what's best for Alex - but then I keep circling back to they had NOTHING to do with getting her to eat solids, that was all us, so why can't I just work with her speech therapist on chewing and sucking? I guess we'll just have to see!
Monday, November 30, 2009
But being patient can really pay off!
Every month at school the kids have a journal and it comes home the last day of the month. They can color or write about anything they want in the journal - at the end of the year, we're supposed to compare them and see how far they've come with their writing and drawing skills. Today the journal came home and as I was going through it, it was pretty clear what his pictures where - a pirate ship, the Mayflower, a turkey, then I got to the last page and I have to say, I definitely shed a tear.
Thursday, November 26, 2009
Monday, November 23, 2009
Here she is primping for her party...
I love this picture of her, clearly excited!
My in-laws drove in Friday night, and my mother-in law baked and baked and baked...here's a sampling of all of her goodies!
Alex got a visit from her dog and buddy Sadie - the bond the two of them is definitely unexplainable!
Totally loving being the bell of the ball...
Grandma and Grandpa from Rochester...
And a picture of her actually EATING her birthday cake! I have waited EIGHT years to see her enjoy cake! And boy did she eat, and enjoy her cake...she ate the whole piece!!! That in itself was the best gift I could have gotten on her birthday.
I wanted to get a picture of all our family and friends that were there to celebrate, but it was quite hectic and that never happened. She got some of the best gifts this year - between my parents, Aaron's parents and my girlfriend Dana she's going to be the best dressed second grader! Aunt Dana bought her the 40th Anniversary set of Sesame Street DVD's...HER FAVORITE. Her therapists made a donation to the Angelman Syndrome Foundation in her name, her best friend Jule gave her a talking photo album, her nurse Audretta, Miss Jennifer and MeMa and Papa gave her great new toys. Miss Katie and Mr. Aaron gave her a great set of pj's, her friends Sherri and Jenni gave her awesome therapy balls and made her 57, yes FIFTY SEVEN new bandannas for her to wear...to name a few, it was a sea of presents!
This morning when she woke up Aaron and I went into to her room and sang Happy Birthday to her and she was, again, all smiles and excited. They sang Happy Birthday to her on the bus, she got her birthday mentioned in the announcements at school over the loud speaker, had a book in the library donated to her and I went in to visit her and her friends and brought cupcakes.
There were quite a few different cupcakes and I asked her three times which cupcake she wanted and each time she pointed to the same one. When I took it out of the box and brought it close to her she grabbed it and literally tried to inhale it!
Happy Birthday my sweet Allie Bean. Daddy and I love you way beyond words sweet girl!!
Wednesday, November 18, 2009
My new camera took this video in very high def and was too big a file to upload, so I had to convert it so it could load and it didn't convert the sound and it's a bit grainy...
Not sure these will show up too well, but here are his letters, and his homework. That's a lot of writing for a Kindergartner in less than an hour!
Monday, November 16, 2009
Saturday afternoon we headed to the nursing home to see Grandma and celebrate her 90th birthday. She looks so good!
Grandma Hayes holding the sign Zachary made for her
Zach singing Happy Birthday to his Great Grandma!
Zach, Ryan and my nephew Jack helping Grandma blow out her candles
Aaron, me, my sister-in-law Liz and my brother-in-law Ryan
The Hayes boys with their Grandmother
My mother-in-law, Joan, taking Grandma and Jack for a ride
Zach and Great Grandma Angie
The Hayes Family
Saying good-bye to Grandma
We headed to Aunt Helen's house around 6:30 for dinner. Ryan, an amazing chef, didn't want to pay for food to be delivered when he could cook in under 30 minutes what we would have been ordering in. So he and Aaron took over the kitchen and made an awesome Italian feast.
Although it was a whirl-wind, we truly enjoyed spending time with all of the family. It's times like that I get sad that we are all so far away from each other. My in-laws and Aunt Helen and Angelo are so wonderful to us and so giving. I hadn't seen my nephew Jack since he was about six months old and I so enjoyed watching him running around talking up a storm while I got to catch up with my sister-in-law Liz.
We had a 7AM flight back home so we were up at 4:30AM. Needless to say we were all in bed very early last night!!
When we got home, Alex was very excited to see us! She was outside with my parents and was all smiles when we got out of the car. When we got inside, it was obvious my parents hadn't had any down time the entire time we were gone. Laundry was done, my bathrooms were scrubbed, the light that has been out in my closet for two months was replaced, my oven (which has been neglected for a very long time) was clean like new, the remote for Alex's stair lift that had been broken for a month was fixed, Fall pansies were planted in the front of the house, my mums had been cut back, there were potted flowers on my porch and dinner was made. I've said it before, but I'll say it again, Aaron and I (and the kids) are very, very blessed to have such an amazing family, on both sides!