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!