Pulling out of it.

It's been a really long time since I've posted. I'd like to say it's because I've been so busy but that's not entirely true. Honestly, I've been dealing. Dealing with life, dealing with changes, dealing with Rett Syndrome and in the process I've tripped and fallen into a pit.

Maybe it's because Annie got sick yet again and gave us a really good scare sleeping upwards of 20 hours a day. Maybe it's because durring this time yet another rett angel slipped away unexpectedly in her sleep (one angel has been called home every week this year and most are unexpectedly while they are sleeping). Maybe it's because Annie's still screaming with stomach pain most days (we had a breif honeymoon after taking her off of the prevacid but the pain is back). Maybe it's because we are at a point now where there is almost nothing left to try and I wonder if Annie will ever be able to live a life free from pain. Maybe it's because we are starting to talk home and car modifications both of which we are unable to pay for, both of which I never dreamed of ever having to do. Maybe it's because exercise and staying strong is not something I want to do anymore but something that is necessary for me to be able to phyisically continue taking care of my growing child. Maybe it's because my blood pressure is rising and my back is failing and my Annie is only 5 years old. Maybe it's because when this all started I always believed there would be a cure before Annie turned 5 (don't ask me why, I think it was my minds way of accepting the diagnosis, believing that it wasn't a life sentence but that we would be cured before Annie got too old). Maybe it's because just as Annie's virus is lifting she is now being hit with seasonal allergies and I feel like her tiny, tired body just can't take much more of this. Maybe, maybe, maybe. Whatever the reason it doesn't really matter. What matters is that I have 3 beautiful little people that God has given to me to care for. They need me everyday and I don't have time to wallow in my missery, throw a pitty party and hide my myself in the covers with the curtains drawn like I want to. Soooo, I am getting back onto my feet and grabing that strong hand that has been reaching down here since the second I feel into this pit and I'm going to be lifted out of it. It's not easy but I know that it will be worth it. After all, just look at these faces!

Saying prayers for all the young special needs mom's like me that are realizing this same thing and to all the special needs moms that have gone before us and have shown us that we will make it through.

Calibrating the ECO

Over Spring Break we had a chance to use the ECO Eye gaze computer again. Here's some video of sweet Annie calibrating the computer. The first thing you need to do when using an eye gaze computer is to calibrate it so the computer can pick up your eyes. Its funny, the 3 eye gaze computers that we have tried have all use the Tobii eye gaze component so you would think that they would all calibrate the same but they don't. Annie does really well calibrating the ECO and I just LOVE this video she is concentrating so hard when she's calibrating and then she looks so proud when she see's how well she did!

I just love this computer, the freedom that it will provide for Annie will be life changing!

Easter Goodies!

We don't fill our kids Easter baskets with candy, instead we fill them with fun toys and we try to find a thing or two that reminds our kids of the REAL reason we celebrate Easter. Oh, don't get me wrong, the kids eat more than their fair share of candy, they just have to wait for the Easter Egg Hunt for that!

I thought that I would post here what Annie got for Easter since some times it's difficult to find age appropriate gifts (Annie's 5 by the way) for our sweet angels and Annie seems to be having fun with her Easter goodies.

This actually didn't come in her basket, it was a great gift that wonderful Grammy brought for Annie. Its the Gazillion Bubble Machine. This is awesome! It takes batteries and has an on/off switch which means we were able to adapt it to a switch, and ta da Annie controls the bubbles! Here's Gracie doing hand over hand with Annie and helping her hit her switch!

Here's Annie with her Bear, but no ordinary Bear, this bear has speakers in it's feet. We can hook it up to a radio, CD player or my i-phone and Annie can listen to music without needing ear phones. I wish I had a picture of her sweet smile when I hooked it up to my i-phone the first time and she heard the music coming out of it, not to mention she LOVES her stuffedies!

Here's the Singing Bible. I was looking for a Children's Bible on CD for Annie and came across this. It's perfect, she absolutly LOVES music! Oh, and even better, we can hook the CD player up to the bear above! :)As you can see in these pictures Annie isn't her typical, happy, smiley self. She's going through a rough patch yet again. She is off and on happy and in pain - which is a blessing, much better than just 100% pain but yet still not ideal. I have a couple ideas and we will be seeing some of her specialists this month so hopefully we will get to the bottom of it quickly but she could sure use your prayers!!!

Happy Easter!

Easter is one of my favorite times. I love remembering what Jesus did for us just 2,000 years ago. This time is certainly a time for miracles! I also love Easter because we get to have the whole family over at our house. We have a nice brunch and follow it up with an Easter Egg Hunt for the kids and then lots and lots and lots of deserts!! Here are some highlights!

Annie's beautiful Easter dress! Thanks Grammy!

Getting ready for the hunt

The kids thought it was funny to wear their buckets on their heads!

Off and running!
Big brother James helped Annie fill her basket!
2 little cuties!

Happy Easter Everyone! He IS Risen and ALIVE!

April is Autism Awareness Month!

Happy April!

April is Autism Awareness Month, did you know that Rett Syndrome is the most severe form of Autism? It is!

What's more is that a cure for Rett Syndrome is likely to bring us closer to a cure for classic autism. So when you support rett research you are also supporting autism research!

And, Good News, we've got lots of ways for you to help!

Garden's of Hope - are our signature Girl Power to Cure paper flowers that are sold for $1 to benefit rett research. Head out to Knapps Dairy Bar in downtown Rochester or Caribou Coffee on Walton and Livernois or Walton and Adams and help grow the Gardens!

Virtual Garage Sale: Do you have an attic or a basement full of stuff you haven't used in years? Do you have kids that have outgrown their toys? Are you in the process of moving? If the answer is yes I ask you to please consider taking some time to put those items on Craigslist and donate your earnings to Team Annie to raise money for Rett Research! If you don't have the time to do Craigslist but would still like to help out consider donating an item - you can drop it off to me and I'd be happy to sell it!

Other Ideas: Would you like to help in other ways? What's your hobby? What do you like to do? Bet we can help you raise money! Enjoy running? Enter a local race and run for Rett! Involved in your church? Have a bake sale or Grow a Garden of Hope at your church! Have your own business? Consider donating a portion of your April sales to Rett research! If you feel compelled to help us find a cure Team Annie is here to support your efforts!

Donations: Maybe events aren't your thing but you would still like to help. You'll be happy to know that we will take your money! Donate to Team Annie! Our Goal is to raise $1,000 this month and we are already over 20% there. Stop by our first giving page, read about Annie, make a donation and leave a comment to support her fight!

Another baby girl is born with rett syndrome every 90 minutes. After a year or two of health and progression this baby will start to regress and loose the ability to walk, crawl, speak and use her hands. Then she will have trouble breathing, difficulty growing, trouble with chewing and swallowing, seizures will set in as well as extreme anxiety. Research has shown that these symptoms are reversible! Support Rett Research!

Overwhelming Strength

Annie had her last day on the Lokomat today. She had a 6 minute "walk test" to see how much progress she has made since her first day. She slammed her distance! Her first walk test - 8 weeks ago - Annie was able to walk with assistance a distance of 156 feet in 6 minutes. Today she was able to make it 285 feet! I am so proud of her! Hopefully we will get a chance to this therapy again in the summer time but until then we will keep up the walking at home.

Today I'm feeling so overwhelmed at the strength Annie has.

While most 5 year olds are doing dance or playing little league Annie works tirelessly at gaining the stength to walk. Most 5 year olds are learning how to tie their shoes and snap their fingers, Annie's hands are forever clenched and wringing, just pushing a switch is a struggle. While most 5 year olds are learning to read Annie is trying to use her eyes to communicate the most basic of needs. While most 5 year olds are driving their parents crazy talking up a storm and asking questions, Annie's not able to utter a single word. While most 5 year olds get an occasional stomach ache, Annie is plagued with chronic pain. While most 5 year olds don't have a care in the world Annie is riddled with constant anxiety. While most 5 year olds ask their parents for 5 more minutes of TV or an extra story before bed, Annie cries out in exhaustion because her brain won't allow her to sleep.

I watch her work so hard and some days I can't help but scream "it's not fair, it's not fair, it's not fair!". Not a day goes by that I don't beg for the Lord to allow me to take her place. I have come to the realization that I could never take her place, I'm simply not that strong. Annie was given these struggles because our God knew that she had the strength to live this life. What's more is that despite these struggles Annie is teaching. Annie shows us what's important in life and keeps us from complaining about insignifcant things. She reminds us of all we take for granted and without speaking a single word she is a constant example of love. I am so blessed to be her mommy! Keep up the hard work baby - you're doing great!

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31

Annie the Movie Star!

Well, I know that some of you already know that we have been working on a documentary of Annie and our life with Rett Syndrome. A wonderful filmaker named Susan has been capturing our simple, little life on film and documenting all the ups and downs that go into rett syndrome. It has been a little while since we have been in front of the camera but Susan has been working very hard on editing and such and will be presenting a small clip of the documentary at an exhibition on Sunday. Here is a picture of Annie with her Grampy (I just love seeing the bond between these two!) I think it's a very fitting title. I pray this documentary will spread awareness of rett syndrome (and possibly raise funds for research) and show just how amazing our silent angels are!