Namine had a clinic appointment yesterday with special needs at CHW. It was really just an overview of how she’s doing, and what’s coming up. The long and short of it is, she’s remarkably healthy – even despite her recent sickness and having the croup at the moment – and she’s got at least several things coming up: hernia repair, g-tube removal, IEP, and more developmental evaluation.

Namine actually has two hernias. The one that can be fixed, and soon we hope, has been there since birth. On her left side, Namine is missing the abdominal muscle wall that contains her intestine. She was born with it this way, and it is the cause of most of her GI problems. To get it fixed, the surgeon will put an artificial abdominal wall in place – perhaps a mesh, like my own hernia repair. The recovery, however, will be difficult. Because it is the entire abdominal wall that needs to be constructed, Namine will assuredly need much rest.

The other hernia cannot be repaired yet. We’ll find out more when we actually talk to the hernia surgeons and doctors.

The g-tube removal I’ve talked about before, at length. It might be done during the same time as the hernia repair, perhaps not. We’ll see. We haven’t scheduled either procedure yet, because we’ve been waiting for Namine to get better. This winter has been one sickness after another, and not just for Namine. For Jessica too, it’s been rough; I myself am just getting over a cough.

As for the IEP (which is next week Tuesday, if memory serves), I’ve heard all kinds of horror stories from other special needs parents. But the most important thing to keep in mind, I think, is that the most important advocate for our child is us. And we’ve never been afraid to speak up for Namine. Also, Jessica is a teacher. So I think we’ll be okay.


  1. Good luck with the IEP. My son had his first just before he turned 3, but his was only for speech. Was a tough appointment, as the kids never want to do what the evaluators want them to. But – on the bright side, he qualified for the services he needed, and tomorrow morning I get to officially sign him out of speech therapy. Only almost 4 years later! Good luck, I’m sure she’ll do fine.

  2. I had a 504 plan (another type of disability accommodation plan) and I can tell you it is likely to be a headache dealing with the people in charge but KEEP FIGHTING! There will probably be people who will try to stand in your way but you also will probably find allies who will help you. Eventually everyone will give you what you want, the trick is to make them give in first.

  3. I concur with CindyB and add that it’s a good thing you’re not in MPS either. Their services people are way overworked.

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