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, December 29, 2009

Latest Physical Therapy Session

Aaron and I have been doing the 'juggling" sessions since the kids are out of school for the holiday's and we're both trying to get some work done. Today Aaron dropped Zach off at my work before bringing Alex to her physical therapy session. Despite telling Zach that he had to 'lay low' and let Mommy work, he was quite animated, wanted to talk to everyone, go to our lunchroom for snacks, and type on my "cash register" (aka, calculator!). By the time we left my office and got to Children's Hospital for Alex's Physical Therapy session, she was done. And guess what....? She took SIXTEEN, unprompted steps...all by herself!!!! Was I there to witness any of it?!? NOPE!!!! I am SOOOOO disappointed! Her PT Shannon said this week and last week (which I also missed) have been her best PT sessions to date. I can't tell how happy, and sad at the same time, that makes me feel!!! I HATE that I have to work and miss these huge milestones!!! I can tell by how exhausted Alex is when I get her home that she's worked really hard, but I work really hard with her all week to get her to that point (and have the bruises to prove it!) that it's so disappointing to me that I miss seeing it when it really counts...when other people get to see her accomplish so much in an hour that I've worked weeks on getting her to achieve, and then I don't get to experience any of the glory (not that it's about me, but I want to experience the sheer excitement and joy that everyone else does when she does something for the first time that I've been trying to get her to do for the past eight years!) Sigh...next week when Aaron drops her off, I'm sneaking in with my camera to capture all of the magic!

Saturday, December 26, 2009

Merry Christmas!

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.


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Saturday, December 19, 2009

Let It Snow, Let It Snow, Let It Snow!

14 inches so far and it's still snowing! I don't think I have to say how excited Zach is!!! When we woke up this morning it looked so beautiful and peaceful outside.


Even our screen porch had about 2 inches this morning.


At 9:30 this morning Zach's friend, (well, according to her she's going to marry him someday!) Abby, came calling for him just as he was already heading out the door. They had so much fun falling, making snow angels and eating (yes eating!) the snow...









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!


All she wanted to do at first was eat it!



Then she started putting her hands all in it and flinging it all around!







Clearly she had fun!

Zach has literally been outside all day. He keeps saying he can't remember the last time it snowed this much and my favorite comment while he was eating lunch was this was the best day of his life....ever! Oh to be 5 again! :)

Wednesday, December 16, 2009

Checking In!

Tis the season for being incredibly busy! Can't believe it's been 17 days since my last post!

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!
There's more to write about, but that's all I have time for now!

Monday, November 30, 2009

Another Zach Post

You would have never guessed yesterday with the 72 degree temperature that it was November 29th! After church we took the kids for a walk around the lake where my parents live and Zach really wanted Papa to take him fishing.




Zach learned that fishing definitely teaches you patience!


But being patient can really pay off!

Zach and his first perch!
It was so sunny out that Alex had to borrow Daddy's sunglasses. Definitely a nice family day.


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.
He drew a picture of Alex's birthday party. I think he was actually trying to write my Sissy's Birthday Party or Happy Birthday - but when I saw her picture and how he drew her in a wheel chair....well, I cried.

Thursday, November 26, 2009

I'm Thankful

I'm thankful for my health.
I'm thankful for my husband who loves and supports me no matter what.
I'm thankful for my daughter who has taught me so much about myself, but perhaps most importantly that love needs no words.
I'm thankful for my son who has a voice and who fills my heart with more joy than it can hold.
I'm thankful for my family who supports and blesses me in too many ways to count. For rejoicing with me when times are good and for consoling me when they're not.
I'm thankful for my friends that support and lift me up when I'm down and for always being there for me.
I'm thankful that I live in a free country and for the men and women who fight and sacrifice to give me that right.
I'm thankful to God for blessing me with all of these things.

Happy Thanksgiving.

Monday, November 23, 2009

Alex is EIGHT!

No matter how many times I say it, it just doesn't seem possible that my beautiful daughter is eight years old! I remember almost every single detail from the moment I woke up that day until I finally held her in my arms. In some ways it seems like yesterday, yet in others it seems like a lifetime ago if that makes any sense at all. I think I posted in her birthday post last year that I used to get sad when her birthday would roll around. Sad for the milestones she hadn't developed, sad for what was supposed to be that wasn't. But this year I really, really enjoyed her birthday. We had a party for her yesterday and she was surrounded by so many people that love and care so deeply about her. It was also very obvious that she knew the day was all about her. Anytime someone said Happy Birthday to her she giggled, or flapped her arms and then would look up at the Happy Birthday balloon I hung on her chair as if to say, yep, that's right, it's MY Birthday!!! She clearly enjoyed her party and it was a joy to watch her and to have all of our family and friends there to celebrate her.

Here she is primping for her party...
And with her Papa and MeMa...

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...


Her birthday cake...



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.


Getting loved on by MeMa, Papa, Aunt Dana and cousins Abby and Emily

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.

She was quite sassy today, and very, very happy!

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!


It's definitely been a great birthday. Yes, the journey we started on eight years ago has been challenging, but when you see how happy she is, how loved she is and how much joy she brings to everyone that is involved in our lives, I know we are all very, very blessed.

Happy Birthday my sweet Allie Bean. Daddy and I love you way beyond words sweet girl!!

Wednesday, November 18, 2009

Spaghetti Legs and In Some Hot Water!

Yesterday was physical therapy day for Alex. She does a bit of walking for me at home if I stand behind her and give her my full body support, but yesterday she really had a tough time getting any real good steps in. She was crying a bit and doing a lot of biting. You can see just how hard it is for her in this video to keep her body straight - she looks like she has little spaghetti legs. Every time I look at this and see how hard she's working, makes my excuse that I'm just too tired to get on the treadmill seem really lame.


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...


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On to Mr. Zach...at school they use a behavioral system using a bear and honey pot. It's the same concept most school's use to let parents know about their child's behaviour using a stop light system. Green means you had a good day, yellow means you had to be spoken to and red means you had a really bad day! So in Zach's case, you start the day out with your bear on a honey pot. If you get spoken to on more than one occasion, your bear comes off the honey pot, and if you're really having a bad day, your bear goes into a cave. On our walks home from school every day we talk about what he learned and if his bear stayed on the honey pot all day, which for the majority, it does. Today I picked him up and he had this really pitiful look on face and I could tell something was majorly wrong! A boy at school has been pushing him the last two days, and he didn't want to tell the teacher because he said he didn't want to be called a tattle tale, so we had a very long discussion last night on bullying, and the fact that it is NOT okay for anyone to put their hands on anyone else, that it's okay to tell the teacher because it's not tattling, etc. etc. So when I saw his face today I assumed maybe he had another incident with this same boy. We got outside and I asked him what was wrong and he of course answered, "nothing". So I asked him again and he told me that his bear came off the honey pot and that his bear went into the cave and that the teacher sent a note home in his backpack! Uh-Oh. I asked him what he did, to which he replied "let me think about this for a minute"! He finally said that he was talking too much and not listening to the teacher...which we have also discussed on numerous occasions. We talked the whole way home about when it is ok and when it isn't ok to talk, again. When we got home and I looked at the note, I was completely shocked to see that he left out the part "Another student told Zachary to hit someone, and he did". Not only was I upset that he hit someone after our discussion the night before, but when I asked him who he hit, it was a girl! We, or rather I should say I did a LOT of talking (in a loud voice I might add!) for quite a while and then I made him sit down and write an apology letter to his teacher, and to the girl that he hit. Wednesday's are also written homework night for Kindergarten, so by the time he finished the two letters and his homework, his hand was literally shaking.

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!





After he was done with that I made him go sit up in his room to think about what he had done wrong - fifteen minutes later he was sound asleep. I don't know if he's just exhausted from our long weekend and acted out because he was tired, or if it was because it was picture retake day and he was thrilled to be wearing his "church clothes" (dress pants, shirt and tie) to school, or because Aaron had gone up to school and had lunch with him and he was totally excited about it? In any case, I certainly hope he's learned his lesson and his bear stays on his honey pot!!!

As I'm typing, he's laying in his bed singing the Star Spangled Banner on the top of his lungs...and now I'm laughing and I'm slowly getting over wanting to swat him really good!

Monday, November 16, 2009

Grandma Hayes

I knew flying out Friday morning was probably going to be a challenge with the weather we had been having (and the fact that it was Friday the 13th!) but I certainly couldn't have anticipated the actual events of the day. We got to the airport at 10:45AM for a 12:18PM flight. The flight was already delayed 30 minutes by the time we got to the airport. For the next hour they transferred us twice to two different planes, only to put us back on our original flight that wound up leaving at 2:50PM. Our connecting flight in Philadelphia was at 4PM and since it was only a 35 minute flight we thought we might still make the connection. That was until there was to much air congestion and we circled the Philly airport for 35 minutes. We landed and, of course, missed our connection. To make a very long day seem short, we were scheduled on two different flights to Albany only to have them delayed, delayed, delayed and ultimately cancelled. The final flight was at 11:40PM, but that flight too was already delayed and they couldn't promise that wouldn't be cancelled too. So we finally opted to take a flight into Syracuse, and Aaron's dad (who had already driven four hours to Albany and drove right through Syracuse!) drove two hours to pick us up in Syracuse. Of course, our luggage never made the airport change, so we had no luggage until Saturday. We wound up getting to our hotel in Albany at a little after one in the morning (we were supposed to be in Albany by 5PM). All I can say is that Zachary was a complete angel and I was so incredibly proud of him - and so very thankful that we opted to leave Alex home.

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

Her birthday celebration was wonderful. So many people came out to see her and celebrate the special day with her. It was really nice for me to put the faces to a lot of the names I have heard Grandma talk about over the past eleven years. Grandma said she had such a nice day that she now wanted to live to be 100! :)


After the party we headed back to the hotel to change before we left for dinner at Aunt Helen's house. The hotel had a pool, so Zach got to swim for about 30 minutes. My in-laws had gotten us a suite at the hotel and had stocked it full of drinks and all kinds of treats and fruit that we like. I can't tell you what a treat that was, especially arriving at 1AM and being able to have a snack!


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.


While the girls drank wine and watched!
Angelo helped the boys put together the new toys Aunt Helen got them...not to mention the toys Zach got from Grandma Joan and Grandpa, plus Aunt Liz and Uncle Ryan

And Grandpa had fun playing with the new toys!

Aaron got some fun time with our nephew Jack
And Zach got fun time with his Uncle Ryan

By the time we got back to the hotel it was past 11:00 and Zach was exhausted


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!