Genetic Testing

We received Andrew's genetic test results back in March letting us know that he had a duplicate Exon 11.  We were happy we were given a clear answer with his testing, but all of the research and clinical trials are focusing on the latter of the Exons for Duchenne - in the range of Exons 45 - 51.  It kind of diminished our hopes of getting Andrew into a clinical trial, but we will continue to fight and provide Andrew everything we can to meet his needs.

Once we had Andrew's results, we decided to have me go get genetic testing to see if I was a carrier of Duchenne.  We just figured information is power and the more we know, the better.  Well, we received those test results today and I am NOT a carrier of this horrible gene.  Some women who are carriers may have heart issues later on in life and this is now something we do not have to worry about - thank goodness. 

So what does this mean for Andrew?  It means that his Duchenne Muscular Dystrophy was not inherited, but was a sporatic genetic mutation when we conceived him.  This really does not help take away the fact that we have to live with this nightmare each and every day, but it somehow selfishly gives me some peace of mind that I didn't pass this on to him.  Why this precious little boy was dealt this hand in life, I don't know if we will ever know, but I do know that Steve and I will do anything and everything to make his life the best ever!!

And the Project Begins....

We have been talking about getting a new driveway, sidewalk and front porch since we have been living in this house and we finally have started the project!!  We had to wait for MSD to replace the sewer pipe that ran the width of our property in the front and now that they are finally finished, here's to the beginning of what I hope doesn't turn into too big of a headache!!

We decided to widen both our driveway and front sidewalk to help with accessibility for the boys.  So that means removing some trees, bushes and shrubs...

Steve and his Dad going after the first of three trees.

 

The second tree - this one we had professionally dropped :)

Andrew playing on the tractor :)

Andrew and Daddy driving the tractor.

Nathan and Pops :)

Nathan and Pops getting the remains of the third tree from the back yard :)

The Black Keys

After a long day of LOTS of manual labor, Steve and I headed to Chaifetz Arena for the Black Keys Concert.  We enjoyed a great dinner and then relaxed with an amazing concert!!

Got to love the camera on cell phones :)

On the Go!!

This morning we headed up to Parkway Early Childhood Center for their annual "On the Go" event.  They had most vehicles you could think of and the boys enjoyed going from one to the next and of course actually getting to ride a school bus.  It was kind of chilly so we made the rounds pretty quickly and then headed home for lunch.

Andrew enjoying his view from the bus :)

Nathan looking out the window on the bus.

Andrew in the driver's seat of a mail truck.

After lunch, we headed to my parents' house for our Bruemer Family Sauerbrauten dinner.  This is a German style meal that I have grown up with and its become an annual tradition in our family.  It was great to see everyone and catch up.

After dinner, Steve and I left the boys for a sleep over with Gigi and PaPa so we could have a night to ourselves.  THANKS Mom & Dad for giving us a little break!!

Trinity's Spring Social

Tonight Andrew and I headed to his preschool to enjoy the Spring Social!!  There was LOTS to see and do.  We started off with seeing the baby chick that finally hatched from the egg they have been keeping a close eye on :)  Then Andrew showed off his artwork that was on display - he was so proud.  Off to the gym we went for games and activities and then finished off the night on the playground of course!!

Getting a tattoo!!

Pointing out the baby chick :)

Fishing for a prize

LOVING the seesaw!!

A Special Needs Parent

An article worth reading -

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html?ref=fb&src=sp&comm_ref=false

MDA Hop-A-Thon at Trinity

This morning Andrew's preschool hosted a Hop-A-Thon to benefit the Muscular Dystrophy Association. For the past couple of weeks, Trinity has been teaching about disability awareness and the importance of what's on the inside - many things are the same but different.

I was able to come and be a part of the actual Hop-A-Thon and what a breathtaking event. I can't explain the emotions that I felt throughout the presentation, questions and answers, school pictures and an entire room full of children hopping their little legs off :) All to benefit our son - AMAZING!! And not to mention that they had already raised over $2,500 so far to donate!! We are so blessed to have so much support for our family.


Group picture :)


Everyone hopping away!!

Parent Reader

Each month a parent is invited to read to Andrew's class. Today was our special day and we were so excited to share one of Andrew's FAVORITE books with his friends - "Papa, please get the moon for me" by Eric Carle.


Andrew helping read the story - here's Papa talking to the moon.


All of the kiddos so attentive - Papa climbing down with the moon.

Happy Easter!!

The boys woke up Easter morning to find even more candy and presents from the Easter Bunny!! We had a great morning - a nice breakfast, successful time at Easter Sunday Mass with the boys and then a fun-filled afternoon and evening with the entire Vehige Family!!


Andrew checking out everything the Easter Bunny left.


Tired eyes, but excited about his new bug catcher and magnifying glass.


Nathan exploring the insides of his basket :)


Andrew found another egg during the hunt!!


The Easter Bunny himself!!


Andrew and the Easter Bunny.


Nathan didn't stop for the Easter Bunny - too busy walking!!


Grandma and Pops with ALL of their 17 grandchildren :)


An attempt at a family pic...

Mr. Independent!!

Look at Nathan go ALL BY HIMSELF!!

Holy Saturday

We celebrated Easter a day early with the Bruemer side of the family :) The kids had a blast with the Easter Egg hunt, seeing what the Easter bunny left them and of course eating LOTS of candy!!


Andrew hunting for eggs.


Gigi helping Nathan find eggs.


Andrew emptying his baskets.


Mary sporting her bunny ears and trying to eat her egg :)

Dream Play

This morning we headed to Dream Play to help our friend, Ellie celebrate her 5th birthday!! What a perfect venue for a birthday party - all of the kids had a GREAT time :) It was so fun to see all of the kiddos together and running from one play yard to the next. Happy Birthday, Ellie - we were so glad to be able to celebrate with you!!

Nathan's Team at Parkway

This afternoon I met with Nathan's preschool teacher and team of therapists at Parkway to review his goals and progress thus far. Nathan started Parkway almost two months ago - gosh, has time flown by!!

Nathan is doing GREAT!! Everyone is so impressed with Nathan's hard work and all of the progress he's made in such little time :) We are so proud of our little man and hope he only continues down this path. We still have concerns with speech, language and communication as well as feeding, but we know we can't see significant progress in all areas. Nathan's hearing loss is just such an important part of his development and we want to make sure he's getting what he needs.

We will meet again before summer to see where the best fit for Nathan will be for the following school year.

Dying Easter Eggs

This afternoon Gigi and PaPa dyed Easter Eggs with their grandchildren and children :) ALL of the kids had a GREAT time!!


Andrew choosing his colors carefully :)


Mary with her egg.


Another one finished!!


All smiles :)


Nathan - all or nothing.