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Tuesday, September 18, 2012

The Countdown Begins

I guess it's time to dust off the blog and begin again.

I'm sure you're all well aware of Nathan's feeding problems. We've worked with him for almost3 full years with feeding therapy to get him to eat by mouth rather than just his feeding tube. It's worked, sort of. He will eat very few things in extremley limited quantities. There is no variety to what he will eat and if he's in anything other than a great mood forget it, he won't be eating that day. Matt and I knew it was time to get more serious about his eating.

In August we made a trip to St.Joseph's Pediatric Feeding & Swallowing Center, we were referred there by Nathan's GI doctor. The other problem is that Nathan hasn't gained any weight in almost 2 years. His GI saw that as the final straw. Instead of putting him on meds to help him gain weight he wanted to try to increase his PO (by mouth) intake. We were told to expect to be at the feeding center for about 3 hours and they weren't kidding! We met with tons of people with all different specialities; speech therapy, occupational therapy, physical therapy, nutritionist and doctor. The whole team works together and makes recommendations based on your child's individual needs - I expected to get a report in 6 weeks that said "no hope" nothing like being positive right?!

The day we met with them they were all very confident that they could help Nathan learn to eat PO. They said it would take a lot of work though, and it will be a slow process. Matt and I were open to anything, we just want him to learn to eat. Then they told us their recommendation is day treatment, we move to NJ where the feeding clinic is and go to treatment 9a-4p monday - friday for a month. I guess they weren't kidding about intensive therapy! It's also an extremley expensive program and they require pre-approval for kids going, we had to wait to hear what they would say.

I called yesterday to see how things are going, they had just gotten all the approvals necessary. We only  have to pay a portion of what it actually costs, still expensive for us though, and insurance will cover the rest. We have to be in NJ on November 5, it's a Monday. That will be Day 1 of 20. Nathan and I will be moving down to NJ for a month, hopefully coming home on weekends to see Matt and Trevor.

We are all excited at the prospect of Nathan eating by mouth, we just don't know what to expect. The feeding clinic has an 89% success rate of kids meeting their goal by the end of treatment, we have no idea what Nathan's goal will be. When we go there we have a meeting the first day or two to set a goal we all agree on. The worst part is that for the first three weeks he is there I don't get to go, I just have to sit and wait for him to be done. They don't involve parents in treatment until the last week, and then it's only so the parent can learn how to properly feed their child.

So 48 days from today Nathan and I will be in NJ. Matt will be working and Trevor will be roaming the streets fighting the stray dogs for food. I kid, hopefully someone will be able to watch Trevor while we're gone, we're still working out the details! I promise to keep you all updated a little bit better on how the boys are doing!


  1. I have a couple of friends who have done this. If you want I can introduce you via facebook!

    Love you!

  2. Wow, this is big. I wish you all the very best as you do what you can to help Nathan accomplish this goal.

  3. Wow. Laura, you are a rock star... and I love that through it all you keep your humor about you. Those stray dogs will all be running the other way when Trevor shows up.