Through the eyes of a child

I’ve been talking more recently about Namine’s caudal regression. Not a whole lot is clear about it; what may or may not happen in the future, even the current state of her hips, legs, and feet, all of that – it’s uncertain. But one thing is for certain: she’s not a normal child. It’s evident that she’s not a normal child, because her legs are shorter and her feet are shaped weird. So of course, people who don’t know her stare. At the mall, we still get stares; by now, you’d think we’d be used to the stares by now, but every once in a while we’re again surprised that we get angry at those stares. But do you know who doesn’t stare? Namine’s playmate friends in the neighborhood.

Sitting up by herself

I had the opportunity to see Namine sit herself up all by herself last night. It may have had something to do with her being full of pizza and ice cream. Namine and I have a couple things we like to do every night. One of them is share an ice cream sandwich after dinner, and another is sing. I have a few songs I like to sing to her every night. About halfway through the songs, she’ll lay her head down on my shoulder, and I’ll lay her in bed. She usually falls asleep pretty quickly after that. Oh no, not last night.

Stoma care: using Mepilex instead of gauze

The question of keeping Namine’s tracheostomy stoma covered was raised in my mind. Since decannulation, we’ve kept it covered with gauze. It seems like she’s coughing when she has the gauze on, but when we take it off, she doesn’t cough as much or at all. So I called the ENT department at Children’s Hospital around 2:00 this afternoon. I got a return call at 5:00. I guess that’s about par for the course.

Knowing the facts: caudal regression

Namine was originally diagnosed while in the womb with spina bifida. This was before Children’s Hospital of Wisconsin (hereafter known as CHW) ever entered the picture; this early diagnosis was in Jessica’s OB’s office. (Not the pig-headed one who screwed up her c-section, the good one who referred her to the wound clinic.) But spina bifida is not something you mess around with; the doctor referred us straightaway to CHW. Sitting through that first ultrasound was one of the scariest moments of my life. (And Jessica had to switch OBs, a choice we still regret.)

Sickness and surgery

Last night Namine didn’t need any oxygen. It seems like with this cough and ear infection, she’s been kind of on-again-off-again needing the oxygen. But I put the pulseox on her after she was asleep, and she was satting at 88. I admit I was a little worried, because during her nap, she was dipping under 80 and Jessica eventually had to put the oxygen mask on her. I expected the same thing last night, but Namine did well, and the pulseox never alarmed once. I think – I hope – her cough is finally going away. She has been coughing less, but she’s still been coughing some mucus out of her stoma. I really hope we can get rid of the ear infection soon, too. We’re closing in on the foot surgery date fast.

A quick story

I am alone. My best friend, whom I am fortunate enough to have married, is asleep, perhaps dreaming of punching a gastroenterologist in the face. My little love is asleep, oxygenation high enough to justify leaving the mask off for the night. I alone am awake, thinking thoughts known only to me and God, though surely I am the only one who cares. I’m sure most of the normies have gone to bed as well.

GI clinic appointment

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.

A trip to the pumpkin farm

While everybody else sat at home watching some boring game, we took Namine to a pumpkin farm. She got to pick out her own little pumpkins, we took a hay ride, got lost in a corn maze, and picked out some large pumpkins, too. I think it’s safe to say that we had more fun than you did. :p