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
Wednesday, June 20, 2012
Sunday, June 17, 2012
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 :)
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!!
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!!
Friday, June 15, 2012
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!!
Today was graduation day and Andrew was proud to show off his badge and certificate :)
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!!
Wednesday, June 13, 2012
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.
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.
Tuesday, June 12, 2012
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 :)
Saturday, June 9, 2012
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!!
Tuesday, June 5, 2012
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!!
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!!
Sunday, June 3, 2012
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!!
Saturday, June 2, 2012
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!!
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