James and I will be setting off on a big adventure next week (Dad and Grandma will follow shortly after). Looking forward to lots of fun, and hoping for some insight from a very important appointment for James.
James continues to struggle with feeding. I’m sure that comes as no surprise to you as I feel like it finds its way into almost every blog I write. James regressed in many areas during his hospital stay in December/January. He’s recovered and caught up completely in everything except feeding. Being intubated for two weeks of that hospital stay has really taken a toll on his eating. Add to that a bout with Hand, Foot, and Mouth Disease, and we’re pretty much relying on pediasure for calories.
James did feeding therapy at a program in Dallas and came out worse than he was when he started. He did feeding therapy with a speech therapist at home and made no progress. He was evaluated for another feeding program in Dallas, but when I heard some parent reviews we decided to look elsewhere. I spent some time talking with a former co-worker and researching the best feeding programs in the country, and found three that were consistently on top. One only sees children who already have a feeding tube (we’re not there yet), one is too far away from any family or friends, and the other is the Kennedy Krieger Institute.
Kennedy Krieger is associated with Johns Hopkins Hospital in Baltimore, Maryland. That association allows them to have an incredible team of professionals evaluate and treat the children enrolled in their feeding program. James will undergo a full evaluation in July. His evaluation team will include professionals from pediatric gastroenterology, pediatric nursing, behavioral psychology, occupational therapy, speech and language pathology, and pediatric nutrition. This team works together following the evaluation to devise a treatment plan, make recommendations, and provide follow-up care.
There are a few different options we could be looking at for treatment, depending on the results of James’ evaluation. They may come up with a plan that we can do at home, following up with them through Skype sessions to monitor progress. They may recommend out-patient treatment, or they may recommend in-patient treatment. We’ve decided that whatever their recommendations are, we’ll find a way to make it happen. This is too important for James. We’ll do everything we can to get him through this hurdle. Nutrition and feeding issues can affect so many other areas. Our hope is that once we get James eating better, we will see improvements in other areas of development as well.
So James has a big month ahead. Before his evaluation we’ll spend some time with family in Virginia, and following his evaluation we’ll spend some time with family in Vermont. James will travel on an airplane, which he’s done before, and on a train, which will be new for both of us. He’s always been an excellent little traveler, and I’m hopeful he will be this time as well. I’m excited for the adventure that lies ahead. Looking forward to time with family and friends, and looking forward to some answers and guidance for James.
Thinking of you guys as you make not only a physical journey but an emotional and mental one in the months ahead as you try and find a plan for James’ eating issues. Would love to visit with you guys when you return. I so enjoyed meeting you both at the event at Cook Children’s and would love to get together with you soon.
Lisa Grubbs NICU Helping Hands
Thank you so much Lisa. It is an emotional journey for sure! I would love to visit with you when we get back in town. I would like to find a way to help support some NICU families and I think you’re the person who could help me with that. I’ll send you an email when we get back.