This morning was Namine’s pre-IEP IEP. They called it the “preliminary IEP” – more like preliminary waste of time. We talked, we exchanged information, but no real decisions were made. We decided to make decisions, though. Does that count? After the meeting was said and done, nothing was committed. We signed a form or two, agreed to tour the school where Namine will be going (thankfully it’s nearby and wheelchair accessible), and I think that’s pretty much it.

One thing, though, that we do have going for us – the lady from the school district seemed amenable to keeping Namine in the general classroom as much as possible. She will need some extra time for speech, of course, but she’s bright enough (and social enough, God knows) to keep up with the normy kids. We were afraid that they’d want to segregate her right off the bat, but this lady seemed to want the opposite. As much as is possible, she wants Namine to participate in the general population of the class. If there is any good that came of this big ol’ waste of time, I think it’s that.

But no final decisions were made. Certainly, Namine wasn’t tested in any way today; that will have to be done soon, though; they want her tested ninety days before her third birthday. We foresee some issues, but I figure we’ll cross those bridges when we get to them.

Number one is her speech. She can’t make most consonants now, which is why she’ll be having the palate elongation procedure. That will happen sometime mid-summer – that means after the real IEP. (Thankfully, the school district lady did say that we’re not locked into anything, once decisions are made; that we can amend things as Namine grows.) Actually, Namine’s plastic surgeon doesn’t even know if the procedure will enable her to speak better. It’s a shot in the dark, so to speak, and he doesn’t know what he’d do if this doesn’t work. Whee!

Number two is the hernia repair and g-tube removal. That will also happen sometime this spring or summer, and it will be bad. Remember that Namine doesn’t have that abdominal muscle wall; it won’t be like a normal repair, and they will have to construct the entire thing artificially. Post-procedure recovery will require quite a bit of time in the hospital, which possibly means missed school.

Number three is potty training. We’ve started, true, but there’s the issue of the caudal regression syndrome. Typically, CRS patients have some manner of incontinence. Namine seems to be able to tell when she’s going to go, which is good. She’ll tell us “Ayn!” (Change!) when she needs to be changed; sometimes she’s dry, at which point we know to put her on the toilet. But even though she can tell when she’s going to go, we don’t know if she can hold it, or if she has any manner of control at all. She doesn’t yet have the vocabulary to tell us that.

Number four is locomotion. Right now, she primarily scoots around, which she won’t be able to do at school. (They’d be washing her hands constantly!) She has her walker, true, but she’s not yet at a point where she can use it by herself. She can, however, use her wheelchair with increasing skill.

The final thing that comes to my mind – and the most important, as far as her health is concerned – is Namine’s third heart surgery, the Fontan. It’s coming, whether we like it or not. We just don’t know when. Namine has an echocardiogram in August, and we’ll get a better idea then of exactly how her heart is doing.


  1. Glad to hear it went well!

    I have contacts in the disability advocacy community. If you run into any trouble, I’d be happy to put you in touch. Lydia will know how to get in touch with me.

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