I Think I'm . . . Yeah, I'm Disappointed

So the 'rents were awesome enough to take AJ for the weekend. They took him down to the Jersey Shore to where my grandfather lives year-round now. They had a very nice time, though AJ was a bit under the weather. My grandfather gets a kick out of having the great-grandkids running around. Between my Dad's and my Aunt's (Dad's sister) family, we are clearly the favorites. And by that, I mean that he (my grandfather) gets significantly less annoyed by my kids than my cousins' kids. But I digress.

Meg and I spent a nice weekend with Miss Abby -- just the three of us. On Sunday though, we headed up to North Jersey and checked into a nice Radisson just off the New Jersey Parkway. Now, we didn't do this simply to enjoy the urban sprawl that is Paterson, Paramus, Mahwah and the quaint surrounding towns. On Monday, Abby had an appointment with the feeding clinic at St. Joseph's Hospital for Children.

Now, I need to provide some history here, so bear with me.

Abby doesn't eat.

And that's about the gist of it.

OK, so maybe a little more history would be useful. Abby had surgery to repair her esophagus, has reflux, used to be tube fed (NG tube), and has had all sorts of nasty stuff literally shoved down her throat. It took 10 months before she took sustainable nutrition solely through a bottle (and that's with formula mixed to a higher than normal concentration). She has slowly come to accept food, but only in small insignificant amounts. And for the most part, she needs to be in control (that's a big thing with her). Coming at her with a spoon full of baby food is just asking for trouble. Along with a shirt full of baby food.

We've seen many specialists over the past year to help us get control over the situation. We see a pediatric GI doc regularly (who is incredible), she gets OT and Speech therapy that also address her feeding issues to some extent, and we've been to the feeding clinic at the Children's Hospital of Philadelphia. Most recently, we went to a private-practice speech pathologist (who does not take insurance). We actually got some good advice from her and have seen some optimistic if not encouraging signs from Abby within the past week as a result of more structured "practicing" with the spoon. We praise her for the good behaviors -- she loves that -- and we ignore the bad ones as to not reinforce those.

Everyone we've spoken to has really hyped up the feeding clinic at St. Joe's as being the best around. Needless to say, we had some moderately high expectations from this. So we got there and they took us back on time and the LNP took a history. We joked that we should just record Abby's (extensive) history and provide a CD to each medical professional who needs one. Side note: For all of you medical folk out there or those lay people who have experience with this, I came up with a little PDA joke. When asked if there are any cardiac issues with Abby, I say no, but that she did have a PDA. I then say that it either went away on its own or is now so big that no one can hear it. Ba-da-bum! I crack myself up.

OK. Sorry. So then they observe us feeding Abby with the spoon from behind a one-way mirror. We go through our regular routine, clapping when she accepts the spoon, and breaking eye contact and ignoring her when she refuses or swats it away. All in all, it was not one of her better performances. She did accept, chew, and swallow some Gerber puffs. Then they weighed her, measured her length, and a PT came in and did a brief evaluation.

After a few minutes of consultation behind closed doors, they came back with some recommendations. First, we need to address her recent constipation problem (TMI, I know), although her feeding/swallowing issues greatly precede her pooping difficulties, so we have a plan for that. They gave us a tip or two to refine the spoon feeding sessions. And they suggested we come back in a month.

And that's about it.

Huh?!?!

Good grief. And this is "The" place to go? Now I learned a while ago that feeding/swallowing difficulties are tough nuts to crack. It seems to be an art more than a science as there are just so many variables, but come on. I can't believe that we can't develop a more detailed action plan. I know it's one step at a time, but no one seems to know what the next step will be until we are there.

Do I have unrealistic expectations? If I do, please tell me. Mind you, I'd drive 500 miles a day to take her to a clinic if I thought it would help get us over this hump, but are we being selfish if we choose not to go back here as the trip doesn't seem to justify the benefits??

I think we are going to make an appointment with the GI doc to go over this evaluation and probably set up some kind of schedule with the private-practice speech pathologist and hopefully incorporate her guidance and advise into Abby's OT and Speech therapies.

Ugh.

Just very disappointed.