Play Ball!

School is wrapping up as I write this and I have to say that I am looking forward to a summer full of "Mommy Time."  After arriving home from the hospital, jumping right back into work, and trying to keep up with D&Z's doctor appointments it seems like these last few months have been a blur.  I'm excited to slow down and get some quality time in with the boys...if they can fit me into their busy schedules!

Dom and Zac have recently morphed into sports fanatics.  Initially it was sled hockey (which once it ended left us with tons of time that we had gotten used to not having.)  That was great...for about a weekend until boredom swept in.  I knew we were going to have to find something else that would allow us to get Dom and Zac active in the community.   We live almost an hour away from their school so it makes having friends nearby more of a challenge.  Enter.... Challenger Baseball!

Yes, Dom and Zac have decided to continue to become typical sports fanatics by joining our local baseball league.  It's a modified league that invites individuals of all abilities to join in and have fun.  It has been wonderful!

Zac kept his baseball hat on for the exact duration it took me to take this picture.
Ah well....you win some, you lose some.  :)

Each child is given a typically developing "buddy" (generally teens and preteens.)  Dom had a very sweet young boy the first week who has helped him participate.  The second week when we arrived someone else came over to help Dom.  The young boy from the previous week rushed over and said, "Wait!  He's mine!"  I think Dom made a friend.  :)  Both boys are really enjoying themselves.

Dom is lovingly referred to as the "Mayor" at baseball.
He spends more time waving at spectators than anything else!

Even Jay has found a way to participate.  You will never find him far away from his brothers.  He's constantly trying to run into the field, around the bases, or snuggle up with the team and join them on the bench.  He couldn't be a better brother.  They always say that bad things come in threes....I'm pretty sure that blessings do too! 

 Have a great week and enjoy the beautiful weather!  We're heading out for some sprinkler time!

P.S.- If you or someone you know is interested in joining Challenger Baseball there is a league right in Hamburg, NY and another in Grand Island, NY.  Kiddos enjoy a one inning game weekly (lasts about an hour) followed by pizza for dinner.  They also schedule events to get the kids together throughout the year (ex. Halloween and Christmas parties).  It's been a lot of fun so far.  To get more info just follow the link: 
Village of Hamburg- Challenger Baseball

Camping Review: Three Valley Campground- Holland, NY

In our house, Memorial Day marks the official start of camping season.  We always book a site at SpragueBrook Park (Glenwood, NY) for our first camping adventure.  It is less than fifteen minutes from our house so it is the perfect place to go for our first visit, just in case something goes wrong!  Unfortunately, with our crazy start to 2013 we missed the window to make a reservation and by the time we tried to book....they were filled!  So we decided maybe it was time to try someplace different.  Three Valley Campground located in Holland, NY became our destination!

So excited to be camping!

Dom and Zac are probably the best camping buddies I could ask for.  They like to hang out, explore the surroundings, and love a good campfire!  However, like all 11 year olds, they also love their iPad, TV, and watching movies.  So, they were not at all bothered by the frigid temperatures we had in WNY over the weekend.  They were able to enjoy some time in the camper without mom making them come out to enjoy the fresh air.  However, Jay was less thrilled.  He had one mission, and one mission only....ride his bike as much as humanly possible!

Yes, that is Jay's blankie stuck in the handlebars.  Such a silly boy!

The campground was VERY large.  Most people who stay there are seasonal campers who bring their own golf cart to go from one location to the next.  For a frame of reference, the nearest bathroom was about a half-mile away.  Which meant that if we wanted to do anything you had to get in the car and drive.  That fact was probably the biggest downfall of this park. So let's check it out!

Standard bathroom with sink, shower, and two toilets

I can't lie, the pond was beautiful!  If we ever come back I want to stay at one
of the sites by the pond.  We were a good 1/2 mile away.

It was so cold outside I tried to stay warm by baking brownies and putting all the blankets on me! It worked...until Jay discovered my whereabouts.  

Irresistible Brownie Face Invasion!

The boys devoured the brownies!  They are awesome!

Perks:  *Water, Electric hookups at all sites

            *Family Friendly environment

            *Some of the nicest camping neighbors we have had....everyone was very friendly!

            *Relatively flat road (perfect for riding bikes or going for a walk)

            *Walking trails varied from "easiest" to more challenging hikes

            *Bathrooms with toilets and showers were well maintained

            *Heated inground pool

            *Large pond stocked with fish (catch and release)

            

Downfall:  *Everything was VERY far away

                  *Sites varied in size greatly.  Seasonal sites tended to overlap on "weekender" sites making some sites uncomfortably small.  We were lucky and were able to move our site when our initial site had this very problem.

                  *The playground was archaic with the exception of one cool plane glider.  

                  

So when everything was said and done I think it's safe to say that this campground was not for us.  We're going to keep exploring and find the perfect fit.  I'm not completely writing it off forever though.  I think some of the amenities (ex. pool) may be nice if we had been blessed with better weather.  In the meantime, we are going to keep searching for our next adventure.  If anyone has some suggestions, let me know.  I love trying someplace new!

Pardon the interruption: Lots of love to spread!

I'm sure everyone here can relate to the idea that some weeks are a joy, and some are a joy once they are through!  The last few have been a whirlwind of "adult responsibilities " (read-nothing fun!)   I'm glad they are over, because even though daily appointments are good to make sure all is well in the world, they are a pain in the tush to remember and rush around for!  

So, what's up?  Sadly, Sled Hockey had an abrupt ending for Dom and Zac.  The season ended early and for the past few weeks we have been enjoying having our Saturdays back.  We are getting back into our summer groove and did the usual: 

Biker Boy

Speed Demon-Zac

Dom needs a tow truck!

Ride!  Ride!  Ride!  The boys were able to finally get their bikes out and surprisingly Zac has a constant need for speed.  We took them to our local elementary school to go riding.  (Our driveway has a bit of a slope toward the house so we wanted them to have flat land to practice on.) Zac maneuvered his way all around the parking lot!  His coordination is getting so much better!  Dom enjoyed being outside, but still wants to be pulled around everywhere.  I tried to get him to pedal, but he suckered Jay into pulling him around.  Jay is such a little love!  He would do anything for his big brothers.  

Next week we go back to the pediatrician; It will be our first time back since we went to the clinic in Baltimore.  I'm aiming to impress.  But, something tells me I'm not going to have to try hard at all.  For the first time in my life as a mom I am having to cook daily.  One meal lasts for one meal (with MAYBE enough leftovers for lunch the following day.)  Compared to the same meal lasting Justin and I at least three days since we were the only ones that really ate.  The boys are eating us out of house and home....and truthfully I love it!  It is such a welcome change.  People have been asking me lately whether or not I would do it again.  My response....In a heartbeat!  The feeding clinic has been so much more than we had ever asked for.  I would recommend anyone in a similar situation explore all of their options (Kennedy Krieger or otherwise.)  And to listen to their gut.  If I had listened to our past doctors we would still be g-tube dependent.  There's something to be said for persistence and trusting your instincts.    They haven't failed me yet!  

I hope everyone has a wonderful LONG Memorial Day weekend!  If you need me I'll be relaxing with my loves!

The Pit of Our Week

CRUNCH!  CRUNCH! CRUNCH!  That was the sound we heard at the dinner table this week as we feasted on a dinner of chicken, apricots, and green beans.  But why the CRUNCH sound? I kept thinking.  My eyes darted over to Dominic (who's plate was gloriously empty!) to have him open his mouth.  Only then did I discover that he was trying to chew up an apricot pit that must have ended up in the jar and mistakenly on his plate!  

It is moments like this where I am absolutely astonished by how far Dom and Zac have come in the past four months.  We headed to Baltimore with two very selective eaters who routinely did not eat enough food for us that we were "tethered to a tube."  If we were going out we knew that we either needed to bring their g-tube supplies with us or be ready when we came home to use them.  It added another 15-20 minutes to each meal (in total about an extra hour per day.)  It is so nice that now they eating their food so well!  When we are done eating, we are done eating...no extra time using feeding tubes.  

It has also reaffirmed for me the importance and value of high quality ABA practice, done with fidelity, through highly trained professionals.  Dom and Zac have learned that they need to eat EVERYTHING on their plate....well, except a mistakenly placed pit! (Which for the record I removed and disposed of.)  Their behaviors are gone.  Eating is not a struggle, or even something we dread. 

Take note of the empty plate!

Things are going so well we are officially accepting dinner dates.  Be prepared to be WOWed!

Dom loves eating out!  If you ask him if he wants
 to stay in or eat out...it is always "OUT!"  haha!

Sled Hockey!

As a mom, I know I am not the first to say that it has been really hard to watch my kids grow up when all I wanted was for them to stay babies forever.  However, it is safe to say that one aspect of their aging process has not bothered me at all.  I love the boys passion for hockey.  This is due, in large part to the fact that that is how I fell in love with their dad.

As long as I have known Justin he has been on a hockey team.  It didn't matter if it was ice hockey, roller hockey, or even playing hockey on the tennis courts with his friends; He loved it.  For me, it was always nice to go watch, enjoy the friendly competition, and learn the rules of the game (although I never got much further than "the puck goes in the net".)  Even after we were married he continued to participate in a roller hockey league with the same guys he played with in high school.  I guess that is why I always imagined that once we started a family of our own the kids would definitely play hockey.  Unfortunately, that vision changed when Dom and Zac had more motor difficulties that we had imagined.  But, over the years they have gone from wheelchairs, to walkers, to speedwalking around the house!  They still have some difficulty walking (especially on uneven terrain) but it hasn't stopped them from participating in activities that they enjoyed.  They ice skate with SABAH and this past year they joined a sled hockey team!

This has been the boys first big experience working as part of a team and I have to say....It has been wonderful!  It always helps that the other people/parents on the team are down to earth and caring.  It is a travel league so most of the games are in Canada.  But since we live so close close to the border ourselves we count it as a small blessing.  We even lucked out a few weeks ago when after the boys' practice the Sabres showed up for their own practice!!!!

Even Jay is getting in on the excitement!

Well...technically it was the Jr. Sabres, but I won't tell Dom and Zac if you won't.  They were so excited to stay and watch them practice.  Of course they had to go up to the balcony to watch from above.  Dom in particular has turned into quite the hockey spectator.  He loves watching it on TV whereas Zac really seems to enjoy playing more.  Either way sled hockey has been a great opportunity for the boys to make some friends, get some exercise, and make some really great memories.  If you or someone you know would like to learn more check out the team webpage:  www.buffalosabressledhockey.org  In the meantime, we we're off to the rink!

 

P.S.  Dom has been working on his slapshot!  :)

Sensory Friendly Films

As long as I can remember my only wish has been that despite any challenge that D&Z face that they have as normal of a childhood as humanly possible.  So like any other parent a few years ago we thought it was time for them to experience their first feature film!  At the time they were completely consumed with Shrek, so when Shrek 2 was announced it seemed a perfect fit.  What we failed to consider was that the opening film previews for Shrek 2 would be for loud action films.  I'll never forget the preview for Transformers coming on and Dom having a complete meltdown. 

We almost left....it was that bad.  However, we stepped out for a bit and returned once the movie had started.  The movie was loud, the theater was dark and scary to them.  It was not the bet of experiences (despite our good intentions.)  That is why when a friend of mine recently told me about Sensory Friendly movies I had to take some time to mull it over.  Would they truly benefit from trying again.  Granted they were older, but I didn't want to have the same disasterous result.  But I looked into it and this is what I found.

• A sensory friendly movie is simply a movie meant to be enjoyed by everyone.  The theater has the lights turned up, the sound turned down, and audience members are allowed to get up, talk, dance, shout, (or even roll down the aisles as we saw some children do. haha!)  Essentially it is an opportuntiy for everyone to come together to watch a movie without fear of being judged because your child is acting inappropriately.  Sensory Friendly are not just for people with developmental disabilities.  There were also some families with young children who were out for their first movie.  I loved that.  :)
• The people that ran the sensory friendly movie and concession stand were amazing!  When Dom kept leaving the theater to visit the game machines they didn't care.  And since the movie is usually a matinee there was no one else in the theater to have to worry about him getting lost or in any sort of danger.  It was perfect!

When we finally arrive at our theater we selected our seats (spilled our pop all over the floor Oops!) and then relocated so the cleaners could clean up.  The movie started and I have to say...it was an amazing thing to watch.  D&Z were calm with the lights on, the sound volume was perfect (no louder than our normal television) and when we had to get up to move around or use the restroom it was no big deal.  There was probably a total of thirty people in the theater an no one was concerned or bothered by what anyone else was doing.  It was a great experience that I wanted to pass along to others. 

If you are interested in trying out a sensory friendly movie click the link below.  It heads directly to the AMC website.  They hold these movies all over the country so there is a good chance that there is one near you.  Enjoy the movies!

http://www.amctheatres.com/programs/sensory-friendly-filmshttp://www.amctheatres.com/programs/sensory-friendly-films