Tuesday, April 14, 2009

Feeding Eval

Today was Robbie's feeding clinic evaluation.

I was very nervous. First of all, it was at 10am. I know this sounds awful, but we just don't get up very early around here. Robbie generally sleeps about 9pm-9am. As the clinic is on the other side of the city, we have to leave by 9 to get there, which makes for a hectic morning. Then there is the whole feeding him away from home and being judged thing.

I was worried for nothing.

Well, not nothing, the morning was very hectic, but the evaluation went fairly well.

We spoke to the coordinator for a bit, who took some notes. Then she sent in an OT (who we knew from hospital days) and the SLP. (Speech Language Pathologist. I find it ironic that Speech Language Pathologist is so hard to say.)

Robbie put on a lovely show for them. He started out lovely and smiley and flirty- his usual self.

Then it was time to eat. Cue the screaming, crying, thrashing and fighting. He managed to take about 3 sucks in a row a few times but pretty much wanted nothing to do with the bottle.

Then we tried solids. I brought bananas since that seems to be the one thing he seems to like. He fought at first, but finally agreed to let me put the spoon in his mouth if he could hold onto it at the same time. Messy, but it works. They were impressed that he was interested in self feeding.

At that point we pretty much took a break and talked.

The SLP asked a lot about his speech. The OT talked a lot about his skills. I cried.

I was embarrassed about crying, but the subject of patience came up, and I think the guilt that I get frustrated got to me. The times when he eats NOTHING by mouth leave me so worried and I do get frustrated. It's not about knowing he'll get nourished, but about worrying about the future.

They were very reassuring.

The best news of the day was that he's AHEAD in speech. AHEAD, Internets, he's AHEAD. Well, technically he's "caught up" to his actual age, but that's ahead of his adjusted age which is ahead as far as I'm concerned.

The SLP had misread his file and thought he was 10 1/2 months adjusted and was pleased with his progress based on that. When I corrected her that he's 7 1/2 months adjusted she exclaimed "OH! Well, then he's way ahead! He's doing GREAT!"

Music to my ears. I resisted the urge to ask her to say it again.

I told them that the neo had scared the crap out of me because he said that if he didn't learn to eat, he wouldn't learn to speak. They both assured me that is not the case.

They were very pleased that he's so oral. Even though he doesn't eat, he does chew, explore, and generally learn about his mouth. The main goal at this point is to continue his progress in that regard.

The bad part is that they really didn't have much advice for me.

Essentially he has to outgrow it. We need to control his reflux and try to keep him as oral as possible.

They want us to get a developmental nutritionist at home to work with our OT.

But beyond that, we just have to wait. How long? Years. They agreed with our pediatrician that it may well be around kindergarten before we're through this.

Even just typing those words make me sigh.

They tried to reassure me that this is very common in reflux babies and that I'm doing everything that can be done. They were full of praise for how well he's doing and how I've handled things so far.

My favorite part was that they called Robbie smart about 30 times while we were there.

They loved that he's "manipulative" (she then apologized for using that word, but it amused me- it was fine.) because he's learned to pinch the nipple of the bottle shut. He'll let me put it in his mouth, but only if he holds it closed so he gets no food.

They praised how attentive and interactive he is. He played with them. He didn't babble while we were there, but the SLP loved that he has two consonant sounds- b & m.

Overall, I came out feeling better than I felt going in. But I had also hoped for a plan of attack. I'd hoped for, if not a solution, a series of steps towards one.

Instead, I came out with reassurance that it will end- someday- and that for now, he's doing okay.

For now, that is enough.


P.S. I promise to catch up on pictures in the next day or two. The last week has been utter chaos and I'm just now starting to catch up.


niobe said...

Though you're in for a long, hard road, this sounds like basically very, very good news.

And how clever of Robbie (well, and manipulative too) to pinch the nipple shut.

Martha said...

That is such wonderful news!! I am so happy for you, his Dad, and of course Mr.Robbie!!

Adriane said...

This is great news. He is a genius for sure. AHEAD in speech. Love it! The kindergarten sentence was a blow....yikes. But, doesn't it help to put a timeline/deadline to it? Just a little? Yeah, probably not.

I'm so glad he did well. Hope this week is a little better in the eating department.

cd0103 said...

I know it is frustrating, but he will get better, just on his own time line. Hang in there. Great news.

dr.girlfriend said...

Hooray for Robbie!

Ariella said...

Trish, I nearly jumped for joy when I read that he was AHEAD! AHEAD!!!! I am so excited about that for you guys!

It is disappointing to not have a plan of action to "fix" the feeding issue but I am happy they gave you some reassurance.

As for the patience thing, all moms struggle with that. We don't admit to it but we ALL struggle with it.

Over all I am glad the apt was better than anticipated.

Keep up the good work Robbie!