Rough Go

Annie's had a rough time lately. I can't put my finger on it. Things have just been a little different with her. Eating (orally) has been tough, lots of coughing and gagging and very little actual consumption. Drinking has also been a struggle. Sleeping, which has always been an issue, seems to be different as well. Same amount of night wakings but now there aren't as many naps to make up for it durring the day. Annie's been struggling to fall asleep for a nap and once she does she wakes up just a couple minutes later, she looks so tired. She's very restless and has been crying more. Her poor body is being rocked by Rett and as her mom I am reminded again and again of how powerless I am against this horrible disease and all that it has stolen from my baby. Just when I think it can't take anymore it comes and steals again. My heart breaks. Annie's cries bring storm clouds and thunder but I know her smile will return and bring back the sun. I sit and pray for a cure, pray for our researchers and brighter days. At times like this I like to look back at the promising research, like our reversal! And the hope of our cure that is not just from a desperate mother but straight from the scientists themselves, like this interview with Dr. Monica Justice. And then of course plea for money - without funding the research stops and rett wins. If you would like to help unlock Annie and the thousands of girls like her from the grips of rett syndrome please consider donating to research here. Please join me in praying for a cure.

Lokomat

Annie had her first day on the Lokomat today. It took a little while to set up but she got on to the treadmill and walked for 20 minutes today. Annie was a little cranky while she was there, maybe because it was a new thing or maybe just because she was a bit tired but she still did great! Next week we'll be bringing her favorite DVD Boz. I'll bet that will put a smile on her face and make the work not seem as hard! Here's a little video. Sorry, I took it sideways and am not able to straighten it on the computer. Don't worry, there'll be more :)

Making Aliens

James saved up his money for a few months and went to the store to buy a special gift for himself - an alien making kit. Basically it's play-doh and slime with molds. You pour the slime into the play-doh molds, the slime hardens and you've made yourself an alien (must be a 6 year old thing). He's had so much fun with this thing. There are tons of molds to choose from so you can make countless aliens. He's even allowing his sisters to get into the fun. Here he is with Annie allowing her to choose the alien she wants him to make. I just love watching these 2 together!!

Wishes in the Dark

I read this beautiful poem on a friends blog. The author is unknown but somehow I'm certain she is a mother to a rett angel. Her words taken straight from my heart.

WISHES IN THE DARK
Sometimes when she's sleeping
I can see in my mind's eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she's sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she's sleeping
she seems so whole and well
I can't believe she won't awaken
with dreams of which to tell.

Sometimes when she's sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she's sleeping
and my eyes ache with tears unshed,
I pray she'll always be full of peace
as she slumbers in her bed.

Sometimes when she's sleeping
I can almost hear her say
"I love you, Mom, with my heart
and my soul, each and every day".

But always when she's sleeping
I am full of pride'
at the miracle that is my daughter
and the perfection that is inside.

-----author unknown

My Workout Partner

Annie learned how to crawl on all fours when she was 18 months old in therapy. It took a lot of time, hard work, and a lot of screaming but she mastered it. We had worked so hard at learning how to crawl that we hadn't given much thought to walking. After all, you have to crawl before you can walk right? And at this point Annie wasn't even able to stand by herself... or so we thought. One night while we were working with Annie we got her up onto her feet, steadied her, and let go. Low and behold the child stood all by herself! It was a mere 2 or 3 seconds but it didn't matter to us, we thought she was so strong and made sure she knew how proud we were of her by going into a cheer fit and smothering her with hugs and kisses! We got her up a few more times and she continued to show off for us. As we watched her we realized that her ankles were very weak. We thought if we could just somehow get her stabilized a bit more maybe she could stand for longer. Our idea - purple winter moon boots (I know I'm dating myself a bit by saying moon boots right?). Well, we strapped those boots on her and brought her to her feet and what do you know, our plan worked! Annie was now able to stand for a good 10 to 12 seconds!! More crazy proud parent moments! Now that Annie had proved to us that she was able to stand all by herself the next logical step was to start taking steps. We grabbed a little tykes shopping cart that we had for the kids and placed her hands on the handle bar and started moving the cart - Annie's first steps!! What excitement we felt knowing that Annie was capable of taking steps. We worked so hard at this every single day, hours and hours and hours of getting her to her feet, helping her grip the shopping cart and slowly pulling the shopping cart until her feet would step forward. Annie continued to improve, she was able to stand for longer, her walking time increased and eventually she was able to push the cart all by herself and was essentially walking with assistance. [Sidebar: the boots and the little tykes shopping cart are still the best "AFO"'s and "gait trainer" that we have ever come across - and the most economical too!] Annie has always had trouble sleeping so while we were going through some really rough sleep patterns we tried to channel her energy into therapy. Typically trading off bringing Annie down to the basement at all hours of the night and getting her up to "walk". Back and forth from one side of the basement to the other, its a wonder she didn't wear a path on the carpet. Since the time of Annie's first steps we've had strong days and not so strong days. Weeks when we have spent hours on therapy and weeks where we hadn't had time to spend even a half hour, but the goal has always been the same - to get Annie to walk independantly. Through the years we have seen Annie get stronger, have more stamina, improve her gait, learn how to weight shift, and just recently we have gotten Annie to bend her knees when she takes a step (try taking a stepor two and be very concious of all that your body does just to put one foot in front of the other - now praise God that He has allowed you to walk). Walking would open up a whole new world for Annie. She would actually have a little bit of control in her life - walking where ever she would like, not to mention that it may be a bit easier on mom and dad not having to carry her everywhere. But walking is also weight bearing exercise which is so good for Annie's thinning bones, not to mention how much it would help with her scoliosis not having to be sitting all the time. We have made walking a priority for Annie and have tried to do everything we can to help her. We do most of Annie's home therapy in the basement (aka play room, work out room, craft room). We work with her a lot and still to this day use the little tykes shopping cart. Now that Annie is so used to be up and on her feet and is much more stable than her earlier years we are confident in her abilities and don't have to be directly behind her to catch her when she falls (although we'd never dream of turning our back on her). This has allowed us a little more freedom when we are doing therapy and me, being the busy mother of 3, I'm constantly looking for ways to multitask. Sooooo, we've decided to have our workouts together! I get Annie up on to her feet, help her grip her shopping cart and then I hop on the treadmill! It's wonderful! We both get in our workouts and I don't feel the motherly guilt of having my daughter just sit while I'm running. I set Annie up close to me so I can watch her the whole time and I'm able to hop off the mill if I see her start to fall. I also hop off from time to time because she's not able to turn yet so if she hits the end, I just turn her around! We have a lot of fun together, I shout out to her how much time she's been walking and she just giggles and smiles! We have been increasing her time slowly and just yesterday she stood/walked with her cart all by herself for 30 minutes!!! Annie is amazing!!

Annie with her "boots" on - getting a little kiss from her cousin!

Our strong girl today!

Extra Curriculars

Sorry I haven't posted in awhile. The kids have been keeping us very busy with their schedules lately. James has just recently started Karate and Gracie is doing gymnastics. Take a look!

I'll be sure to get more karate pics, these aren't the best, Annie wasn't thrilled about being there so I had to sneak some pics through the door!


This girl was built to be a gymnast - too cute!

On top of Annies typical Pysical therapy and Occupational therapy she will be starting an intensive therapy program called the Lokomat next week (God willing all goes well with the insurance approval!). We're thrilled to have the opportunity to utilize this therapy. This is one of only 6 pediatric lokomat suits in the country and it's only about an hour away! I'll be sure to post video.

American Idol!

Angela Martin is a mother to a rett angel and has once again made it to Hollywood on American Idol. Angela is such a fighter she is a single mother, her daughter has Rett Syndrome, her father was killed 2 years ago and her mother was missing just last month. With all that heartache this woman is still going, still giving it her all and still reaching for her dreams all with a smile on her face - what an inspiration!!