Mary Driving!!

Some of you may have seen this already. It is a video that we took of Mary last week while the weather was warmer. She is driving her KidKart mounted on a Z500 demo power base. We rigged it up with a mini-proportional joystick, which Mary is much better at using than the proximity switches we were using before.



We are submitting the order for Mary's own chair now and hopefully if all goes right we will have it sometime this spring!! Here is what Mary's chair will look like:


"Popstar Pink" is the color she chose, she is very excited to get it!

Video of the Day!!

Here is a video of Mary holding the camera and counting and playing with her butterfly.

Enjoy!

Hope everyone is having a good December!

Happy Thanksgiving!!!

We hope everyone had a great Thanksgiving. We are going to catch up on some pictures from the past few weeks, so here are some slideshows:

The first one has some pictures of the kids from Thanksgiving. Mary and Kate decided to bake some pumpkin pies and take them up to the local fire/rescue guys to thank them for everything they've done for us. It is always better to see them when it is not an emergency!



The second slide show are some fun pictures that I took of the kids in the playroom yesterday. Mary was having lots of fun playing with her little brother and visa versa:



These last few pictures are from when Mary's great aunt Danielle visited us a few weekends ago. It was great to see Nellie again and it was great for Mary and Jackson to meet her. We hope to see her more this spring and a lot more when we move to New York next year!



Again, we hope everyone had a great thanksgiving! We truly do have a lot to be thankful for!!

Mary's New Stander

Here are some pictures of Mary in her new stander! She even chased Sam to the end of the street today and was smiling the whole way! She is doing much better than her ambulance ride and ER visit yesterday - lets pray it stays that way!










We woke up to a light dusting of snow and then we had flurries in the afternoon - winter is arriving!

Hope everyone had a good day!

Kate, Ryan, Mary and Jackson

VeggieTales Live!!

Hi All! We drove of to Woodbridge, VA yesterday (Near D.C.) to meet some friends and see a very special show. . . we saw VeggieTales Live- God Made You Special!! Mary was SO excited, that she wouldn't sleep the whole ride up! She really enjoyed the show and she did really well. It was our first opportunity to use our new MAX EasyS stroller and we LOVED it. Mary was so comfortable in it all through the show! I'm attaching some pictures from the day. I would recommend this show to anyone with children. If it is ever in your area it is definitely worth the drive and price of tickets!

Larry the Cucumber and Jr. Aspragus

Mr. Lunt (The Gourd)

Bob the Tomato!!

Mary and her new friend Emily

Posing for pictures!!

The whole crew (L to R- Heather, Emma, Mary, Jackson, Ryan, Nate, Diana, Emily)

Mary hanging out with Elmo and Larry the Cucumber in her new stroller!

Lastly, a super cute picture we took of Jackson today! His eye is looking a little better!!

Mary at Camp Holiday Trails

Today was a beautiful fall day! 70 degrees and not a cloud in the sky. . . and Mary got to go to day camp! It was a wonderful experience! Camp Holiday Trails is a camp for children with chronic illnesses located here in Charlottesville. It has been operating for 35 years! And it is absolutely beautiful!! Mary had a wonderful time at the camp. She played with all the other children and she even got to ride a horse!!! (Mommy was SUPER excited about that too!!) Mary had a super good time, but it really wore her out. I the ride home she was so tired she was asking for her Bipap.
Here are some pictures from the day! Enjoy. . .



P.S. Her horse's name was patchy and he was the oldest horse there. . . he was 34 years old!!!

Halloween Tigger and Pooh!!!

Happy Halloween everybody! Originally Mary was going to be a monkey for Halloween, but she wanted to be Tigger, so it just came naturally that Jackson would be Pooh Bear.

Here is Mary after mommy painted her face, she loved it!!

Here are tigger and pooh getting ready to go trick-or-treating. . .

Pooh bear!!

Mary had a great time!!


Mary and her friend Anna. . .

The whole family, on the lawn at UVA.

Mommy and the kiddos . . .

Someone is worn out!!!

Mary's 20 Month Birthday and Pumpkin Carving

Fall is here!!!

The weather has been just beautiful here that past few weeks. Very cool at night and in the mornings, just above freezing. Copper loves it and spends most of his days outside. The afternoons are very comfortable and Kate and I and the kids have been taking nice walks and runs with the stroller. On Sunday we took some "leaf" pictures that we wanted to share with all of you. Here are the pictures:



Also, Jackson has been getting more and more personality every day. Mary just adores him!! (Although she did get a little jealous this morning when mommy was showing Jackson some of Mary's flashcards!!!) Here are some pictures of Jackson rolling over and playing with Big Sis:



Enjoy and have a great week!

Mary's EagleEyes Fundraiser Challenge!!!

We recently came across an amazing technology that helps people with severe physical disabilities have full access to computers. It is called EagleEyes and it was first developed by Boston College almost 10 years ago.

The Opportunity Foundation of America (www.ofoa.net) is a non-profit organization that was developed to improve the quality of life for children and adults with severe physical challenges. They are an amazing organization who are dedicated to building EagleEyes systems and providing them to children around the country who need them.

Mary and EagleEyes, how did this come about?

Mary loves using the computer and it is a great learning tool for her, but we've had a hard time trying to figure out an interface that is right for her. She can move a standard mouse, but she does not have very good control and she is not able to "click" the mouse buttons. A touch pad doesn't really work for Mary either. We've also tried Camera Mouse, which would work great in theory, but Mary doesn't have enough head movement to control that mouse either. So we stumbled upon EagleEyes and it seems to be the perfect solution for children with SMA, and other severe physical disabilities (and even visual disibilities).

Click here to view a video of how the system works (Video #2 is better)

We are trying to raise money for the Opportunity Foundation so that they can continue to manufacture these EagleEyes systems and provide them to families at low (or no) cost. Our minumum goal is $1200, but I think we can raise much more than that. There are two ways you can make a tax deductable donation:

1. Go directly to the Opportunity Foundation Of America website (www.ofoa.net) and click on donate now! PLEASE ENSURE THAT YOU SELECT "Sponsor and EagleEyes System" AND PUT "For the Benefit of Mary N. (miracleformary.com)" IN THE COMMENTS BLOCK AT THE BOTTOM OF THE DONATION PAGE.

2. Mail Donations to: (again put "For the Benefit of Mary N_____." on the check.)
OFOA\EagleEyes
atten: Debbie Inkley
7166 Villandrie Lane
Salt Lake City, Utah 84121

Tax ID# 87-0626778

Thanks to everyone for your continued support of Mary and our family and thank you for supporting this great cause. God Bless you all!

Carter Mountain Apple Festival

Yeah! Fall is in the air! Its time for pumpkins and hot apple cider! We all ventured out this weekend and enjoyed the beautiful weather. We went to the Carter Mountain Orchard for their fall apple harvest festival. We all had a great time.
The orchard overlooks Charlottesville and the views are quite spectacular. I'm just waiting for the trees to start changing color, then we'll know fall is really here. They say it will be late October before leaves start to change around here. We can't wait.



Well, that is all we know for now, just wanted to share these pictures.

SO MUCH TO BE THANKFUL FOR!!!

Many of you reading this blog know that Kate, Mary, Jackson, and I had a very scary event happen to us on Sunday. After having a nice lunch with some friends of ours in the downtown mall in Charlottesville, we were walking back to our car and Mary stopped breathing in the stroller. Luckily, thanks to our quick response and the help of lots of people nearby, we got Mary cleared out and breathing again. The ambulance was there almost immediately and Mary was in the ER within minutes. We were back home the same night and Mary is doing fine.

After something like this happens it makes you sit back and think of all the things we have to be thankful for. Here is a small list and some pictures of all the things I am thankful for:
-two wonderful kids
-a loving wife
-great family and friends who pray for us all the time
-our nurse who told us to always carry the "ambu bag" in the stroller with us when we go out
-the people on the street who called 911 and rushed to help us in our time of need
-ambulance crews/first responders/and emergency personnel
-our doctors and nurses (too many to mention by name!)
-the soldiers fighting overseas for our freedom
-The Lord our Father

Hope you enjoy the pictures. . . .

Mary's Driving Lessons

For the past several months we've been in the process of getting Mary ready to drive. Yes, we've been evaluating her for a power chair! We'll the time is coming closer to when she will have her own power chair, but for now she has a loner chair from the Kluge center where she does her PT. Here is a small video of the first day she brought it home and drove it in the driveway. Mary loves to turn in circles. We are still working out the details of how she will interface with the chair, but for now she is using proximity switches and it is working ok. Hope you enjoy the video!

r

Blog catch-up!

Hello everyone!! We know it's been a very long time since Mary has posted anything - she's been very busy!

We just had a great visit from Grandma and Grandpa Windscheif! While they were here we went to the mountains, Michie Tavern, story time and a hike on a really cool trail near Monticello! We also celebrated Mary's 18 month birthday! Mary got to pick out a fish for her birthday, which she named Dorothy! Along with her fish, Grandma and Grandpa found a praying-mantis and put it in a jar for Mary to see. Mommy thought it was yucky and wanted it out of her house. We think it is still lingering outside trying to find its way in!!

Mary has been having fun playing, blowing bubbles and learning how to drive a power chair! She's doing very well and next week we get to take the demo home to practice! We're all very excited - even Jackson!

Speaking of Jackson - Mary loves being a big sister and is teaching Jackson about playing with toys - especially Elmo!

Daddy started back to school a few weeks ago and Mary really misses him during the day. When Mary hears the door open at the end of the day she smiles and says "Daddy, Daddy!". She's so smart and cute! She's also been learning all her colors and even more animals! Next we're working on the alphabet!

We hope everyone had a great summer and things are going well coming into fall and the winter months. Please say a prayer that Mary and Jackson stay very healthy during "cold and flu season" and don't have any major illnesses or hospitalizations - Mommy is very worried about this! Also, please continue to pray for all the SMA families as well as our troops serving overseas - including, Mary's Aunt Angie, Mary's Uncle David and Mary's Godfather Joe.

Thank you all for your continued support and prayers! We love you!

Here is a slide show of some of the pictures from the past few weeks:



We will remember to post more often! Love, Mary, Jackson, Ryan and Kate