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!