Week 7, Day 3

 

We made it to Chuck-E-Cheese’s today!!!  I’ve never been so happy to see that little mouseJ.  I have come to realize that four perfect sessions is a tall order for a two year old…especially one who has been through seven weeks of nonstop therapy.  So, instead of lowering the expectations, today we worked the system a little!  Gavin truly had three great sessions.  The last session has become a tricky one because we are pushing him with chewing.  Today’s solid food for chewing was vegetables…zucchini, summer squash, and red peppers.  It was a stretch.  I talked to Chris, the therapist who was with us the last session about our great day and the trip to Chuck-E-Cheese that was on the line.  We both agreed that we needed to manipulate the session as much as possible to keep the experience positive to allow Gavin to get another reward for his success.  As expected, things started to go south with the first taste of veggies!  We quickly moved to putting them in the mesh, and that got us through the first “circle.”  By the time the veggies came around in the second circle, Gavin had decided that he was not a fan, not even with the mesh.  Chris acted quickly and explained to Gavin that this was the last bite of veggies we expected him to try, and he all we needed him to do was allow the mesh wrapped veggie to touch his tooth to the count to ten.  She assured him that she had the actual food he was going to chew after that, but we just needed to get through this bite.  For extra encouragement she through in a little mention of the mouse that was waiting for him!  It worked!  The sweet boy even chewed the piece of zucchini in the mesh the whole count to ten because he has been trained that that is what he is expected to do!  We moved onto a friendly pretzel, and things improved.  Chris asked him about different games at Chuck-E-Cheese the entire session, and we survived with no real issues!  Gavin was so excited when the timer went off.  He jumped out of his chair and bolted down the hallway yelling “I’m going to Chuck-E-Cheese!!!  Four good sessions!!!  I’m going to Chuck-E-Cheese!!!”  Throwing the last session a little was definitely worth it todayJ.

There was a nursing student, Robert, observing patients in the clinic today, and I had mentioned to him that Gavin has NDI, which has led us here for feeding therapy.  Robert has been an EMT for many years and was familiar with the condition, but not surprisingly had never actually seen a patient with diabetes insipidus.  He ended up asking me questions for the hour between sessions about our experiences with Gavin and asked if he could share Gavin’s story with his class.  In our conversation, he asked me how Eric and I have coped with having a child with medical needs and feeding issues.  At first I didn’t know how to respond because we are typically focused on how Gavin is handling everything.  We don’t always stop to really see how much this has changed our lives.  Sure, we think about it, but if Gavin is good, we are good.  Then, I realized that sharing Gavin’s story is what has gotten us through the hard times.  Eric and I are very open about Gavin’s condition, and in telling his story, we have in turn received so much love and support from family and friends.  Writing this blog has helped me to express the highs and lows of the process.  I thank all of you who are reading this for being invested in Gavin’s journey and providing our family with so much support.  Through telling Gavin’s story, I hope that we can help other families who are also struggling with feeding disorders and spread awareness of NDI.  There is nothing we can do to change Gavin’s condition, nor will I ever know why God has chosen Gavin to have NDI, but I do know that if Eric and I do not accept and cope with his condition and everything that goes along with it, then we will not be able to provide Gavin with the ability to cope with his own life.  He needs to feel that he has our love and support, and can’t spend his whole life asking “why?”  Again, NDI is a manageable condition, and Gavin will live a nice long life.  That is what we are focused on!