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

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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!