On Bull Pond . . .

So it is mid-June and it has been SO long since we've updated Mary's blog or the website, www.miracleformary.com, so he is a quick update!

Mary has been extremely busy this summer!  She started off the summer by playing baseball! Her team is the Pirates and Mary was super excited to get started.  For the opening day, Kate and I had decided not to take Mary in her Powerchair, because we wanted to get a feel for things... well, Mary woke up that morning and said, "I get to play in my powerchair, right?" She was determined to do it, and we all know that when Mary is determined to do anything, there is no changing her mind!!!  So, she got her way:


The summer, we've also had lots of trips to the zoo and spent many days in the backyard, swinging and playing in our new pool!

This past weekend, Mary's Grandparents came in from Michigan and her cousins came all the way from TEXAS to join us at the lake cabin we had rented.  Here are some of our favorite pictures from the weekend:

Visiting the Rifton Factory!

Since Mary started school over a year ago, we've been searching for a suitable seating system that will allow Mary to sit up in the classroom and be able to interact with her peers and do her schoolwork.  We needed something that can offer Mary enough support in both the head and trunk to allow her to sit upright, but at the same time allow her to recline if she starts to have respiratory trouble.

As you can imagine, this is no small task... there are many chairs out there, but few of them meet the specific needs of an SMA Type 1 child.  Many kudos to my wife Kate for not giving up the search, despite many roadblocks along the way.  Recently, one of our physical therapists at Inspire, named Debbie Engle recommended we contact a seating specialist named Jean Minkel, who suggested we look into the Rifton Activity Chair for Mary.  Kate made contact with Rifton (www.rifton.com) which specializes in adaptive equipment for children and adults.  It turns out that the company is located less than an hour from our house!!! So, they invited us up to let Mary see the chairs being built and to try one on for size...

From Rifton

Well, Mary did great in the Rifton Activity Chair and loved meeting the friendly people at the factory!

Here is a video of the chair:


Here are some pictures of Mary in the chair:

From Rifton

From Rifton

Here is a picture of Kate, Mary and I with the Physical Therapist and one of the VP's of the company.

From Rifton

As a mechanical engineer, it was a treat for me to see all of this amazing equipment being designed, built, and assembled on-site by amazing dedicated and talented workers.

We were all blown away by the kindness and generosity of the people at Rifton and in turn the workers at the factory were very excited to see someone like Mary using one of the products they've worked so hard to design and build. At the end of our visit, they offered to let Mary to take chair that she tried home!! Again, we were absolutely blown away!!

Thanks to Joe, Deborah and everyone at Rifton for your kindness and generosity!

Daddy Daughter Dance!!!

Daddy asked Mary to go to a daddy-daughter dance with him!  Of course it takes a lot of prep work to get a girl ready for a big date like this...

 Mommy got to do Mary's nails!

Smile Mary!

Beautiful Nails!

Jackson helped Mary make some homemade pizza!

Of Course a girl can't dance on an empty stomach!

All dolled up!

Ready to go!

All dressed up!

On the way into the Dance!  Mommy had to say goodbye...

The first friend we saw was Josie!

Dancing the night away!

It was very hot in there!  Look at the sweat on Daddy's forehead!

Mary dancing with Hannah!

Of course Jackson, not to be outdone, had to get fancied up as well!!!

 Mary and Daddy had a wonderful time and made memories that will last forever!  Mary said she was a little disappointed they didn't play Hannah Montana or Robbie Ray music, but she said they did play Katie Perry which she thought "was a little inappropriate for little girls..."  Oh how her wonderful mind works!!!

Mary Turns 4!!!!

Today our little miracle girl turned 4 years old!!  We are so proud of all of her accomplishments and look forward to all of the amazing things that Mary will do in her lifetime. 
Mary had a Dragonfly party (sticking with the bug theme. . . butterflies, age 1, ladybugs, age 2, bees, age 3) and she was lucky enough to have lots of family and friend there to help her celebrate.

Mary's Great Grandma Dorothy and Grandmother Julie flew in from Minnesota, and her Grandpa Bill and Grandma Martha drove in from Michigan. Of course her favorite Great Aunt Danielle "Nellie" came up from NYC as well!

 Mary also got a special surprise of her Grandma Martha playing "Happy Birthday to You" on her violin during her party.  You should have seen Mary and all the other kids faces light up when she started playing! (I didn't get any pictures of that)

It was a great weekend and Mary really enjoyed having all of her friends over for the party and having family in town.  It culminated today when see shared cupcakes with her class at school.  After that, she took a well deserved 2-hour nap!

Kate to run the NYC 1/2 Marathon to help raise funds for SMA research!

After running my first half marathon last year I decided to run another one…this one with a higher purpose – to raise money for SMA Research through Families of SMA!  And, I have decided to ask my friends and family help me reach my donation goal of $1,000!

Here is the deal:
 Step 1. YOU donate some money. (Donate at: http://www.fsma.org/LWC/KateNelson5779)
 Step 2. I will run the NYC 1/2 Marathon on March 20th - only 13.1 Miles.
 Step 3. Together we raise awareness and support for SMA.
Yep, it is that easy!

Raising money for the Families of SMA is important to me because my daughter has this terrible disease and I want to see a cure found and the end of children losing their life way too soon!  Mary is a happy, bright, intelligent three year old who loves life, loves to laugh, and loves to tell a good joke!  I feel like this is the least I can do to help find a cure for a disease she battles every day!  She is my pride and joy and I would go to the moon and back for her!  I am sure you will agree that helping me reach my goal is totally worth it!
 Donating through this website is easy, fast, and totally secure. This is also the most effective way to support my fundraising efforts for Families of Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) is the number one genetic killer of infants. It is an often fatal disease that destroys the nerves controlling voluntary movement, such as, crawling, walking, head and neck control, even swallowing. One in 6,000 babies born is affected with SMA. There are 7.5 million Americans that carry the gene that causes SMA.
Families of SMA makes a difference every day because of your support. Together, in 2011, we will accomplish the following: -Expand our investment in critical Spinal Muscular Atrophy research to grow the drug and clinical pipeline to increase our likelihood of finding a treatment and cure.
-Provide direct support to hundreds of families with newly diagnosed children by sending them packets of important information and pieces of critical equipment.
-Provide services to more than 70% of SMA families in the United States.
-Host the nation's largest gathering of those affected by SMA and the researchers working towards a cure at the 2010 Annual SMA Conference, bringing together hundreds of families and researchers from around the world to share ideas and hope for the future.

If you encounter a problem with a link, please visit my The 2011 NYC Half Marathon Home Page at http://www.fsma.org/LWC/KateNelson5779  NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Fund-raiser" page, enter my first and last name and click on "Submit". Then click "View Fund-raiser" by my name in the results list to go to "My The 2011 NYC Half Marathon Home Page."

Thank you,
Kate

Mary home and doing well!

Hi everybody!! I am so sorry for not updating Mary's blog! Mary was able to come home from the hospital a few days before Christmas! We have been home and she has been doing ok. We didn't even realize the blog still said she was in the hospital until Mary's teacher was surprised to see her in school on Monday!
Mary is still fighting this cold and has a lot of secretions at night, basically we have to suction her every 30 minutes to one hour throughout the night, so we don't get much sleep.
Please pray that everyone continues to stay healthy!

Thanks to everyone for the Christmas cards and well wishes while we were in the hospital!