This is what summer looks like...

Remember when you were 10 years old and school ended.  You were filled with sheer joy that you weren't going to have to get up for school for what seemed like an eternity.  I'm pretty sure it felt something like this:

Remember when you were small enough to swim in a creek....Zac still is :)

Having a picnic outside was pretty much the best idea ever!   Jay likes them because can teach his brothers how to scarf down cookies!

Sparklers were the best thing ever invented!

Hanging out with your mom was still cool. <3 font="" nbsp="">

The boys had their first day back at school today and while I'm not sure that this past week will make their list of top vacations, it definitely has made mine.   We are so blessed.  I hope everyone else is enjoying the summer with their family too!

P.S.- Thank you to everyone who called, emailed, or text me ideas to fix the boys bedroom.  I still has a little bit of touching up left to do, but I think Dom likes it!

Bordering Insanity

Summer Vacation is in full swing at our house and Dom, Zac, and Jay have made pretty good progress on their summer bucket list.  

Pick up Mom's classroom fish:  CHECK!

Jay serenading our fish...for about an hour!

Have a water balloon fight:  CHECK!

Dom is sly like a fox!  He doesn't look at you when he sneaks up and then...WHAM!  

Eat chocolate fondue for snack:  CHECK!

Tear the border off our bedroom:  CHECK!  (What isn't that on your kid's bucket list too?)

I almost died when I saw it.  The problem is that the border that I picked out is:

1.  Too expensive to keep replacing (this is the third repair to the wallpaper and at $60 each repair it is adding up fast!

2.  I don't think that the boys want the border up.  (see explanation below)

You see...Dom and Zac crave routine and predictability.  When we moved into our current house we literally moved the last box on our way to the hospital to have Jay.  When I came home it was with their new baby brother.  Our timing was absolutely horrible.   Dom and Zac didn't sleep at night.  Their room was different, in a different house, with different paint colors.  I was lucky that my MIL offered to paint their room for us.  We couldn't get the exact same border that they used to have, so I found a suitable replacement and up it went.  Fast forward two years and three repairs later and Dom keeps asking me to paint the walls red.  

It started in our dining room when I asked him what color to paint.  He quickly responded "RED!"  Ever since then he has been on my case to paint something red.  Truthfully, I like the color red....for accessories.  I can't imagine a fire engine red boys room.  But I have to do something...and I'm not sure what.  I would like to keep the same quilts that my mom made them.  But beyond that....I am open for suggestions.  What would you do?

Cowboy Quilt Color Scheme

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!  :)

A Delightful Event

Sometimes the best surprises come in really small packages, or even the most mundane of events.  I think that I why I have enjoyed the past week so much.  

Our week had started out simply enough.  We enjoyed Easter, but all the while were mindful of the follow-up appointment in Baltimore this week.  Doctors appointments always make me a bit anxious, probably because they usually yield more bad news than good.  However, going into this one I really felt that the boys have been doing really well overall.  What could they possibly say?....Well then again doctors always seem to find something to say :)  

So off we headed to Baltimore.  The boys are getting used to the eight hour trip and were amazing sports along the way.  I was even able to turn them on to some sweet treats...Skittles!  Whenever we stopped at a rest stop I would run in and grab some Skittles.  I would spend the next 20 minutes doling them out one-by-one.  The boys have really improved in their chewing ability.  They were able to manage them without really any difficulty...something that simply wouldn't have been possible prior to feeding clinic.    They are pretty awesome!  

At the clinic, the therapists awarded Dom and Zac the Gold Star for keeping up the good work.  Usually, once the kids return home they regress a bit.  It's somewhat typical, but not something that you want to see happen if you can prevent it.  For Dom and Zac that wasn't the case.  Instead of regressing, Dom and Zac made progress!  We still have quite a bit of work to do, but we're getting there day by day.  I guess I should also respond to the #1 question everyone has been asking since it was a big topic of conversation while we were with the doctor, "When are the boys getting their tubes out?!?"  Well, since the boys have had a long history of feeding disorders they are recommending that we keep it in at least one year from the last time it was used.  So that means that they aren't coming out any time soon.  But, I'll take it.  It's a good precautionary measure.  The last thing we would ever want to do is take them out prematurely and be faced with the possibility that they may need them and have to re-do the surgery to have it reinserted.  We can live with the tubes (as long as we're not using them!)  haha!  

We tried to make the doctors appointment a bit of a vacation.  We went swimming at the hotel pool and had a chance to visit with some of our favorite hospital nurses and friends.  However, it was bittersweet to know that we had returned to our "normal lives" while other people were still there.  We are so lucky that the boys have done so well and that our stay was relatively short.  

We ended our week with a quick shopping trip to IKEA.  I had been invited to go up with a friend who loves my kids almost as much as I do.  When we had finished our shopping I was famished and it was time for Dom and Zac to eat.  However, we really needed to hit the road.  So we grabbed a few hotdogs and started loading up the car with our goods.  I gave Dom and Zac each a bite of hotdog and then placed them down in the middle of them both (in Jay's carseat).  Slowly they started taking bites, and then quickly they were each gobbling up their entire hotdog.  We looked at each other with mouths dropped open and that's when she said it.  "I've gone out to dinner with you guys, and they have never devoured their food like that. That is amazing."  I have to say it made me smile, both inside and outside, to have someone else see how well the boys are doing.  They are pretty awesome!  Now if only I could get them to eat some chocolate.... we are drowning in a sea of Easter candy.  Perhaps we can work on that next week!

Feeding Clinic- The Aftermath

(The first (of many) meal(s) out......Yay!)

Well it is safe to say that the journey to and through Kennedy Krieger did not end the minute we were discharged.  In fact, a huge step in our journey occurred as soon as we arrived at home.  Zac got sick!  I usually like to be the person that shares good news.  In fact, perhaps the major reason why I haven't sent out an update (despite tons of requests) was that I truly didn't know what to say.  We were hoping that Zac would pull through and not need to use his tube (our goal is to go one year tube free).  However, it took about 3 weeks before the doctors were able to find out what was wrong and take care of it.  He's completely fine now.  But the whole ordeal was a bit scary and I didn't want to make others worried when we didn't know what was wrong.  So here is what you missed....

LOTS of exciting things happened when we arrived home.  Our first week back was spent completing school training.  The boys receive breakfast and lunch at school so the staff there needed to be trained in the feeding protocol.  I received the glorious job of being "trainer."  I have to say, that going from "trainee" to "trainer"was a bit nerve-wracking but at the same time solidified for me that no one is going to get the protocol 100% perfect every time.  In fact, it's really hard to when you are dealing with behaviors.  When we arrived home Dom and Zac didn't necessarily "like" to eat, but were beginning to learn that refusing to eat was no longer a choice.  One way or another the food is going to travel into their mouth and down in their bellies.  I had talked to the boys teachers at school before we came home and they were extra curious about when the boys would be arriving back at school.  It seems they were also eagerly anticipating the boys return!

On the boys first day back to school the staff and students lined the entrance when Dom and Zac returned to clap and welcome them back.  The students even helped make the posters that were hung in the entrance in art class.  It's nice to see that Dom and Zac are loved and cared for by so many.  School training went really well.  We are very fortunate that the staff at the boys school really understands and respects how much we want Dom and Zac to be life-long oral feeders.  They really tried their best to implement the protocol and I think the boys will be in good hands.  My favorite part about school training was that they were nice enough to let me hang out briefly while the boys had gym.  The boys are in separate classes this year, so Dom was super excited to be back in the school's therapeutic pool, while Zac was working on his hockey skills.

He was even able to put them to good use when the boys returned to Sled Hockey practice.  We had signed the boys up for their first season this year, but were sad when we realized that we would have to leave town for two months while they were in the hospital.  However, the team never left the boys thoughts.  They painted hockey signs in the playroom at the hospital, were constantly watching Mighty Ducks, and loved listening to "We Are the Champions" on my phone.  So we were excited to make it home in time to watch the team's next game.

Dad, Dom, and Zac at the game

Dom and Zac loved it!  I would never recommend anyone spend any length of time in the hospital if they can avoid it, but it has definitely helped remind me to find perfection in the ordinary.  I really like being home....I can't believe how much I missed it.  And I have no idea how parents of children in the hospital for 6 months, a year, or more do it.  I guess it's amazing what you can do/endure when you have no other choice.  

In the weeks since then, the boys have continued to do well.  We are staying tube free and despite colds and typical sinus issues they have been healthy.  We have been playing lots of sled hockey, and celebrating life as a family.  It's nice to be back in a state of normalcy.  But before I get too comfortable we are heading back down to Baltimore this week for our first follow-up visit.  I'm hoping that we get the Gold Star for feeding performance, but we will have to wait and see.  In the meantime, I hope everyone has a wonderful Easter....God Bless!

P.S.- I have received lots of requests for updates about how the boys are doing.  A few years ago I set up this blog to keep track of our camping trips for my own memory.  I never got too far into it (as you can see!)  However, I am going to give it my best attempt to try to keep everyone updated about how the boys are doing through this.  Subscribe to the RSS feed for updates....or just check in occasionally!  

Feeding Clinic- Week 7

Originally published 2/1/13

Wow! What a difference a week makes.  It seems surreal that we have been here for 7 weeks, and yet it has been an amazing investment in our families future.  Last week the boys had their first “Tube Free” day and, truth be told, they have not used their tubes since!  Their first week as solely oral feeders went fairly well.  The boys are having a difficult time getting their caloric needs in with only three daily meals offered, so we are now having an evening “snack” as well.  Between these four meals they are now getting all the calories (and water!) they need to remain g-tube free!  Woo Hoo!

Our hospital “family” (the other patients, their families, nurses, and doctors) have been celebrating the boys success all week.  It isn’t typical that a child (much less two!) come in taking in only 30% of their daily calories orally and leave with 100% and no reliance on their g-tube.  I think we just came to the right place at the right time with the right people.  Life’s crazy like that....everything always works out one way or another.  You just have to have a little faith.  Thank you to everyone who has believed in us, sent us prayers, added the boys to prayer lists, etc.  I truly believe in the power of prayer, and I don’t take for granted any opportunity that we have been given.  I often wonder how we ended up with such great family/friends.  Now more than ever, I know how blessed we are...Thank you!

We did manage to squeeze some fun into this week.  On Sunday, Mom, Dom, and Zac went on a “dinner date” to Cafe Hon.  We had wanted to go to a restaurant down the road, but it was closed so we ended up there on a whim.  The food was great, the atmosphere adorable, and when we came back to the hospital we discovered that it was recently on an episode of “Restaurant Disasters” with Gordon Ramsey.  I checked Youtube to watch the episode...it was totally worth it! (Check it out when you have time!)  Who knew that Baltimore was so big about the “Hon”?  It was so interesting that I made Justin watch it with me when he arrived.  Which brings us to the second exciting thing to happen to D&Z this week....Dad came!  

Justin started training this week and the boys responded in really well to him feeding them again....until we both fed them together.  Then chaos ensued.  As a result, they are recommending that the boys be fed separately whenever possible (especially at school.)  Hopefully we will be able to fade them back into family meals as they get more adept at eating orally and we are more comfortable with the protocol.  Justin was amazed at how much fluids they are now drinking!  The difference is apparent not only during meals though, their bellies are getting bigger too.  Pretty soon Zac is going to be able to do the “Truffle Shuffle”! haha

!

Dom also became a local celebrity this week....Dom’s case is going to be presented at an upcoming speech-language conference regarding chewing development.  They took videos of him while he was here to show during the conference as well as during a course taught to over 300 SLP’s around the world.  With all the cameras surrounding him he now thinks he’s famous.  I suppose that is why it came as no surprise that he wants his face to be added to the mural outside of the playroom.  I think he would be a handsome addition.  ☺

Yesterday Nana and Papa arrived for training too.  The boys have been so happy to finally have visitors that they rarely want to go to the playroom anymore (their favorite place to visit before their family arrived).  Meals continue to go on with everyone getting trained and bearing through the worst of it to see that the boys truly respond well to the program.  We feel very fortunate that they were able to come and experience the program so we can best carry it over when we get home.  But we also had another great surprise when they came to visit.  They gave up their hotel room for the night so that we could get a decent nights sleep!  I was never so happy to sleep in a real bed....the hospital flip-down chair that has been my “bed” leaves a lot to be desired!  

So really it was a great week....and the best is yet to come!  We are going to be discharged on Monday!