VIP Day at MDA Camp

Andrew and I were invited to the VIP Day of the Muscular Dystrophy Association's summer camp.  Every year the MDA sponsors a week-long summer camp for children battling MD.  The campers must be at least six years old to attend, so Andrew will not be able to go until the summer of 2014 :( 

This year it was held at Babler State Park and Andrew and I were able to experience an exciting afternoon - one we found out that is the campers' favorite day every year.  I took way too many pictures that really doesn't do much justice, but what an amazing scene!!  Over 40 fire trucks and emergency vehicles arrived with their lights beaming and sirens blaring.  They came from all over and we had to play Firefighter Bingo to make our way around all of the trucks and meet all of the firefighters!! 

And the best part, we were able to ride in an old fire truck that was modified for passengers seated up top on benches.  Andrew couldn't wait to ride!!  I was overwhelmed when the firefighters and volunteers started lifting children out of their wheelchairs and seated them on the fire truck.  I was fighting back tears and couldn't believe the amount of support by so many.  The smiles on all of the children's faces were incredible.  And then for the actual ride...this fire truck was speeding through the winding roads of the park.  It was such a thrill.  I actually had to hold on to Andrew and the little girl sitting next to me so we wouldn't slide off the bench.  Afterwards we found out that the truck hit 50 MPH at some points in the ride!!

We had a GREAT afternoon and Andrew couldn't stop talking about the fire trucks.  This camp is absolutely AMAZING and know that Andrew will love every minute of it when he's old enough to go :) 

All of the fire trucks parading into the parking lot. 

The BIGGEST fire truck.

Honking the horn :)

Using one of the hoses.

Trying on a fire fighter's coat.

Wearing a helmet (they are super heavy!!)

A Dalmatian even showed up!!

Trying on boots and making a funny face :)

Waiting patiently for a ride on the fire truck.

This fire truck was AWESOME!!  They were throwing paint from up high on the ladder onto some canvases on the ground - neat art!!

Andrew getting his hand painted...

A ladybug!!

T-Ball Award Ceremony

Tonight was Andrew's last t-ball game and award ceremony.  He finished the season with a great game and was super excited for his first trophy!!  Gigi and PaPa were able to celebrate with us and treated Andrew with ice cream afterwards :)

Listening to the coach's speech (Andrew's on the far left).

Waiting patiently for his trophy :)

Yea Andrew!!

So proud!!

SLACKER!!

I have totally let this blog pass me by and am doing my very best to catch up for the past two months!!  We have been busy little bees and have so much to share...sorry for the negligence!!

Play Time!!

Andrew is always wanting to play with Nathan.  Lately, Nathan is starting to engage with Andrew and it's been so much fun watching them interact!!

Cooking up something good at the kitchen.

Brotherly love :)

Chesterfield Aquatic Center

We have been spending a lot of weekends at the Chesterfield Aquatic Center.  This is the first year that both boys are really able to enjoy it and Steve and I can let go and relax for a bit :)  The boys LOVE the water and we are taking advantage of wearing them out!!

Splash pad.

Andrew in all the fountains.

Nathan not quite sure just yet :)

Andrew coming down the tunnel slide!!

Making his exit.

Nathan splashing next to the slide.

Last of the Construction

Our retaining wall was completed around our front porch today!!  This was the finishing touch to all of the work we have had done the past couple of weeks.  Lets keep our fingers crossed all of the landscaping survives and that we are able to grow grass in the dead heat of summer!!

From the side before all the plants.

Finished retaining wall.

And, I just had to add a cute pic of the boys at their water table - they LOVE playing in it!!

Busy boys :)

Andrew caught a FROG!!

Hanging out on the deck tonight after dinner, Andrew spotted a FROG and couldn't get enough!!  We had quite a few laughs this evening...

Checking the frog out :)

Chasing the frog down!!

KICKBACK Event at One 19 North!!

On Monday and Tuesday, One 19 North hosted a KICKBACK event on behalf of our family.  They graciously gave 10% of ALL of their sales for those two days of business directly to the boys' special needs trust!! 

We had an AMAZING turnout and cannot thank everyone enough that was able to make it out and enjoy some delicious lunch, wine and tapas.  What an awesome idea to help bring business to a local wine and tapas bar and in turn help our children!!  Thank you all who helped make this event such a success!!

If you'd like to visit One 19 North for great food and wonderful atmosphere, check them out at www.one19north.com

Happy Father's Day!!

Happy Father's Day to my wonderful husband and father to my two precious boys!!  Andrew and Nathan are the luckiest little boys in the world to have a such a hard-working, dedicated and loving Dad.  Thanks Dad for EVERYTHING - we love you more than the whole world :)

Steve and his boys :)

Andrew and his faces - goof ball!!

And we can't forget our amazing PaPa and Pops who keep our boys on their toes and keep Steve and I going with their unending support and strength.  Here's to all of the Dad's out there that always put their family first!!

Safety Town

The past two weeks Andrew has been attending Safety Town camp put on by the City of Chesterfield Police.  Every day for two hours Andrew has been learning ALL about safety.  I couldn't believe everything he came home talking about and most importantly retained :)  We have our own little safety inspector now making sure everything is up to code - ha!!

Today was graduation day and Andrew was proud to show off his badge and certificate :)

 The safety graduate.

After dinner we headed to our neighborhood pool to relax and stay cool.  The boys can't get enough of the water!!

Nathan trying his new water wings out :)

All smiles!!

Neuromuscular Clinic

This morning we headed for our first follow-up appointment with Andrew's Neurologist since receiving his diagnosis of Duchenne Muscular Dystrophy.  We will continue these appointments every six months to stay informed and keep on top of Andrew's progress.

Andrew did very well with all of the testing and cooperated with everything asked of him.  He was so inquisitive of the instruments used to test his different muscles and measure his strength.  Andrew shows signs of growth and is still getting stronger on his own :)  They call this the "honeymoon" phase of the disease in which Andrew continues to make progress without any intervention.  Unfortunately, this won't last forever and he will eventually start to regress.  Steroids are commonly used to help keep him as strong as possible and prolong him from having to use adaptive equipment to walk and stay mobile. 

Steve and I were preparing ourselves to discuss the start of using steroids for Andrew.  We have done a ton of research and are petrified of the side effects, but know they will help Andrew in the long run.  We are thankful we haven't reached this point just yet.

We were able to talk more to the doctor about Andrew's specific genetic make-up of the disease.  Andrew has a duplicate Exon 11.  Some good news...studies show that there are less neurological issues in the lower range of the exons.  Some boys with Duchenne have cognitive and behavioral problems and that is not a concern for Andrew at this time.  Also a duplicate exon sometimes could mean that there is still some dystrophin present, but the protein is still leaking and cannot be repaired.  But some dystrophin is better than none.  The only way we can definitely know this is for Andrew to undergo a muscle biopsy.  There is no rush or urgency for this procedure, but one we know Andrew will have to have in the near future. 

Steve and I walked out of this appointment in much better condition than in February, but know it's just a matter of time that this horrible disease starts to affect Andrew even more severely.  We take one day at a time and are just enjoying the present.  We continue to pray for a miracle and for our little boy to be mobile as long as possible.

Bike Ride

Tonight the boys were excited to ride bikes.  This was Andrew's last time on the tricycle...he's a bit too big for it and finally ready for his big boy bike!!  Nathan is doing awesome on his adaptive bike and throws a fit when it's time to get off :)

Stopping for a photo op :)

Go CARDS!!

This evening we headed to Busch Stadium with the boys to cheer on the Cardinals!!  This was Nathan's first Cardinals Baseball Game and he did great :)  We were able to exchange our tickets for accessible seating for Nathan and it was just perfect.  He was able to stay in his adaptive stroller and we were in the SHADE!!  The boys had a great time watching the action and seeing fireworks after a home run :)  Steve and I were happy to be able to enjoy the experience as a family.

Steve and his boys...I had a hard time getting everyone to cooperate!!

Goofy boys :)

Learning about the game :)

Andrew really getting into it :)

Almost got a good one!!

School Bus

Today was a BIG day for Nathan - his very first time riding the bus to school!!  We were very apprehensive to take advantage of this service, but Nathan was the last one to get picked up (at 8:20am) and they headed straight to Parkway (school starts at 8:30am).  We figured a 10 minute ride was a good test to see how he would do - he LOVED it!!

Nathan all smiles on the lift going UP!!

Looking out the window :)

Andrew making sure his little brother heads off to school okay!!

All about Nathan

After a big morning with Nathan's first bus ride, we headed to Ranken Jordan for aqua therapy.  The last few weeks the pool has been closed due to construction, so we have been doing PT on land.  It actually worked out because both Nathan's and Andrew's therapists have been able to concentrate on stretching and exercises. 

Nathan has been doing GREAT in his walker and it's already time for a new one!!  We can't believe how fast he is growing and needing new equipment :)  Nathan was measured today at therapy and we should have his new walker in a couple of weeks.  AND, tomorrow Nathan will be casted for new orthotics...I tell you he is growing like a weed!!

So, I posted a couple of weeks ago that we were able to reconvene to discuss Nathan's placement in the Fall.  That meeting didn't go as well as Steve and I had hoped it would and since then have been researching what more we could do for Nathan, if anything.  Well, we found out that unfortunately advocating for your child is a PROCESS and seems to be one that will be never-ending.  Good thing we are in this for the long-haul and know that we will do whatever we need to in order to get Nathan what he needs and deserves. 

After much discussion with many professionals, we decided to write a letter to Parkway stating our concerns, documenting areas of improvement as well as progress and AGAIN asking for them to meet Nathan's needs.  I couldn't believe that documenting our situation and concerns in writing would make the difference.  A couple of days after sending the letter, we were told that we would meet again to discuss our options.  As frustrating as this is, at least we are finally being heard and hope that we are able to get Nathan in the best environment for school as possible.  We are looking forward to getting this meeting scheduled and ultimately put behind us!!

Handy Andrew :)

Andrew is a big fan of the cartoon Handy Manny and received a tool belt yesterday at the Navy Family Day at Scott Air Force Base.  He was so excited for this gift and had to try it on first thing this morning!!

All excited wearing his tool belt.

Every tool was a book that told a story about what the tool does.  Each one had its own spot on the tool belt - what a fun toy!!

Hippotherapy!!

This morning we headed out to Therapeutic Horsemanship in Wentzville for the boys' first hippotherapy session.  Andrew and Nathan are enrolled in the summer session which lasts from now until August.  We are so excited to be doing this new type of therapy and the boys just love the horses!!

Nathan with his helmet on ready to go.

Andrew waiting patiently for his horse.

Nathan getting situated.

Andrew's on!!

The boys in action :)

Outside of the ring.

Nathan following.

It's amazing to watch these sessions.  The boys are working on core strength the entire time without even knowing it as well as everything else the therapists are coordinating into the session.  These horses are the most tame animals and just do what they are told.  What an amazing way to do therapy!!