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.


video

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!