We went to Baltimore with one goal in mind; a plan for James’ feeding and weight gain. When we left Baltimore that’s exactly what we had. It doesn’t get much better than asking for what you want, then getting what you ask for. It doesn’t happen often, so when it does it’s a moment worthy of a little celebration. That’s exactly what we did following James’ evaluation at The Kennedy Krieger Institute.
Everything about Baltimore and Kennedy Krieger was perfect. So thankful that my youngest brother met us there and spent a couple of days exploring the city with us. We ate lots of great food, took James to a baseball game (the Orioles were playing the Rangers, couldn’t resist!), and walked around, enjoying the sights, sounds, and friendly people of Baltimore. I was eager to explore a little. Maryland is one of the top states to live in if you have a child with special needs. It’s definitely on our list of possibilities as James gets closer to school age.
I have to say, I was surprisingly nervous the day of James’ evaluation, right up until we arrived on the campus of The Kennedy Krieger Institute. As soon as we arrived I knew we were where we needed to be. I knew this was the place that could help James. It actually gave me goose bumps to see it in person. The bar was set and it was high. Could they live up to my expectations? Absolutely!
We spent about 2 hours with the evaluation team. The team consisted of 7-8 people with different specialties who were all familiar with James’ background and our concerns. Prior to our appointment we mailed them copies of medical records, a very in-depth questionnaire, and videos of James eating. I wondered how much they would review ahead of time, turns out they reviewed all of it. During the evaluation they asked detailed questions, did a physical exam, and observed James eating a few different foods. Team members came and went as needed to keep James from being completely overwhelmed. It went so smoothly, and James was such a champ. They were able to get a pretty accurate picture of James and his struggles with feeding. It truly could not have gone better.
Following the evaluation we met with the team again to hear their recommendations. Their biggest, most immediate concern is James’ weight. When plotting his height for weight on the growth chart he’s at less than 1%. According to their experts, children need to be somewhere around the 25th percentile for good brain growth and development. He is 4 pounds away from the 25th percentile. He definitely has some catching up to do. We knew that, so the question is how do we get him caught up? The team had three main recommendations.
- They recommend a G-tube ASAP. We would still do all oral feeds through the day, but would be able to give him additional calories during the night to help make up for what he’s missing. Additionally, they see many children regress slightly when they begin feeding therapy. It gives us a way to get food in James if he does the same thing.
- They also recommend having another swallow study done to rule out aspiration. James had a wet cough and a gurgly voice following eating. Two red flags that need to be addressed.
- And, finally, they recommend feeding therapy. If James goes to them for therapy they will admit him to their in-patient program. Due to his background and past feeding issues they want to proceed with some caution and keep him closely monitored.
So we have a direction! No more wait and see, it’s time for some action. There are lots of additional details, but those are the highlights. G-tube, swallow study, in-patient feeding therapy. Lots to think about and lots to discuss with James’ doctors here in Dallas. James is on the waiting list to return to Kennedy Krieger for therapy, but it will be a couple of months before they have an opening. In the meantime we’ll look at all our options and try to make the best decisions for James.
I’m incredibly thankful to all of the people who helped to make this trip so special for us. We had the thoughts and prayers of many behind us, and wonderful friends and family all along the way. We created beautiful memories and had some unforgettable experiences. It was truly an amazing three weeks filled with so much love. Thank you to everyone who had a hand in it; you touched our lives in a big way, and we are grateful.