Thursday, April 3, 2014

Big Surprise at the ENT (Ear, Nose, Throat) for Nathan

Sometimes life throws you a little curve ball, just a little one. But enough to make you rethink a lot of things, and realize your priorities once again. Nathan is certainly my most unique child...born with a cleft palate, but no cleft lip, which usually happens only in girls. Then we find out he has the Chromosome 22 microduplication which so far they think is not affecting his development (though I am still extra watchful considering what I've gone through with Julianna). Then after his surgery, he is in the 1% of babies that ends up with a hole, or fistula, that might need repairing in the future (not the near future, something we are still celebrating!)

But there's one more thing I haven't really talked about, something that I didn't think would ever become a problem, and that's his Eustachian tubes, or ear tubes, that were placed at the same time as his palate repair back in August. Very routine procedure, for many children. And we were told the tubes would remain in place for about 6-18 months, at which point they would determine if he needed another set placed. The tubes were not even a concern, until yesterday, when he went to the ENT for an easy follow-up. One of those appointments where you think they're just going to look in the ears and everything would be fine. Well, it wasn't.

The ENT always asks about his speech development before she looks in the ears. Last time I was in, his speech was coming along nicely, and the hearing test confirmed everything looked great. That was 4 months ago. Right after he turned 13 months, he began saying words, and imitating sounds that I would say to him. He was picking up so many that I began a list, which I've kept on my fridge. The list is dated January 8th, and by the end of January, I had at least 15-20 words that he could say or imitate. I was so pleased with his progress.

But then suddenly, it seemed like he wasn't saying all those words as much as he used to. And when I would try to get him to mimic my words or sounds, he didn't want, or even try to. I wasn't super concerned, but became more watchful. And what I noticed is that in the months of February and March, I didn't add one single word to the list. In fact, I began looking at that list and circling the ones he still knew. But again, I rationalized by saying he was still just 15 months, and that the language would come. He still knew at least 5 words.

So I told all of this to the ENT, and she looked a little worried. She asked if he was getting speech therapy, and I told her no, not for forming language, but only for feeding issues. So first she ordered speech therapy sessions, because she thinks every child with cleft palate should receive it. And then she looked in his ears, and announced to us that BOTH tubes were no longer in place, and that one ear had fluid building up. His tubes didn't even stay in place for 6 months! She explained that his decrease in language was most likely a result of the tubes falling out, and that he hasn't been hearing properly for a few months now. And that his tubes needed to be placed again, and right away.

Wow, we sure weren't expecting this at a little follow up appointment. Made me so glad that I don't take follow ups lightly--I could have gone months longer and his speech would have become even more delayed. And the great thing is this doctor takes speech development so seriously that we are already scheduled for April 15 to have it done--not even two weeks away. But it is another surgery, where he will be in an outpatient area and be put under anesthesia to have the procedure done. We were told the process is pretty quick and we will be going in in the morning, leaving in the afternoon. So it's much easier than the first one, of course, but it's just another thing we have to arrange, get ready, etc. It wasn't in our plans, but I think what I have discovered with Nathan is he does things his own way! He defies the odds, and definitely keeps us on our toes.


  1. Glad to hear that the ENT is being vigilant about getting it taken care of. A typically developing child should have about 50 words by the age of 1;6. So I'm glad she's getting him the help he needs to get him back to hitting those milestones. Nice to have a Dr who is on the ball. You should notice a huge jump in his word production after the tubes are placed again & the fluid minimizes. Kudos to your doc.

  2. So glad to hear your doctor gets things done! Hang in there...