The idea of Namine being tube-free is, for lack of a better word, epic. Namine hasn’t used her g-tube in quite a while – months, now – so it makes sense to get rid of it. With it still in, we’re still constantly battling pain, granulation, potential infection (being basically an open wound, like the trach in that regard), sores, rashes, and all-around discomfort. I wonder how much of her stomach, intestinal, and bowel issues are related to her just having the g-tube, as well. Now, if we can just get there. The clinic visit went… badly.

I took a long lunch in order to be present for the appointment, for two reasons. One, if Namine actually was able to get rid of the g-tube, I wanted to be there. Two, I know the appointments (that is, GI appointments) always try Jessica’s patience. I thought having me there might benefit everybody. Wrong. The nurse and doctor were still idiots, and we walked out on them.

The main problem is that they’re comparing Namine to a “normal” child. I put “normal” in quotes because to my eyes, Namine is the normal one. But even I must acknowledge the truth: Namine’s physical traits separate her from her peers. She has caudal regression and scoliosis, both of which screw up the way GI determines how they want Namine to be.

For her size, she weighs too little. Congratulations, genius, you figured out that she’s got caudal regression. Her femurs are a quarter the length they would be in a normal child, and the skeletal structure in her legs is much more fragile. This means that her legs – and therefore all of her will weight less than a normal child. I guess that won’t work.

Okay, let’s do a shoulder-to-knee length. That should work. Oh, wait, caudal regression again. She’s much shorter than her age’s average height due to those short legs. Oh, that won’t do either.

I have an idea. How about we take a look at Namine for a moment? Ignore those charts, graphs, and reports on how you’d like her to be, and take a good look at how she is? You’d see a healthy, active, and energetic child. A child who eats nearly all day long, a child who has good color and has a nice chubbiness to her face and tummy. We shouldn’t have to fill her with empty calories that will teach her bad habits and worse diet. We should have her eat normal food, at her own comfortable pace. And guess what? Not only is this my and Jessica’s opinion, but her pediatrician agrees. What’s more, the head doctor in the special needs department, Dr. Gordon, has said this as well.

So we walked out of the clinic appointment. I admit Jessica was much angrier than I was, but she’s dealt with this time and time again. This was just the last straw, I suspect. And good riddance. We set up an appointment in the special needs clinic for Namine to see Dr. Gordon next Thursday.


  1. I can only agree.
    We see a lot of special needs patients in the peds clinic, and if any one of them was as hard headed as that idiot, our Dept head would drop the hammer in a second.
    Pure nonsense.

  2. I’m sure you’re frustrated. I suspect the GI Clinic has “cover your butt syndrome” and they are sticking to the charts and textbook recommendations to avoid liability for Namine not gaining weight.

  3. The funny thing is, the doctor insisted that he wasn’t charting Namine according to the average child, but that she was her own chart (whatever that means). Then in the very next breath, he went on to say how we should be able to predict a good weight gain by doing a head-to-rump measurement. Except, hello, caudal regression! Can’t do that, dipwad. Sigh.

  4. Maybe. I mean, he had Namine’s growth chart up, and he was complaining that it was “all over the place.” The reason for that is because Namine’s length depends on who measures her. Sometimes the nurses will stretch out her longer leg (the left one, the one that doesn’t hook in as much) and thereby piss her off, and sometimes they won’t. So it’s not that her actual length goes up and down, it’s just the recorded length that varies.

  5. I got a migraine after that visit. That doctor was SO condescending to all of us. And why it would take 3 HOURS for them to do ABSOLUTELY NOTHING I have no idea. very frustrating indeed.

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