Comforts of the familiar

Namine is doing slightly better today. She’s still in pain, yes, but she’s showing more of herself, in spite of being groggy from the morphine. She gave kisses today at lunch, and signed “I love you” to me, Jessica, and other family members.

Uncertainty

The main problem with becoming a parent is the lack of instruction manual. It’s worse with a child who has special needs – no two children are the same, and even with something more common like autism, one parent’s methods are not going to be the same as another’s. With something much rarer like caudal regression, you can find the medical information you need easily enough – thank you, Internet – but finding other parents who’ve taken care of an afflicted child is not difficult, it’s nigh impossible.

Foot surgery today: post-op

Namine came out of surgery at 3:30, but of course spending time with her is more important. I’m heating up some dinner in the parents’ lounge now, so I should have enough time to give you all an update. So Namine’s foot surgery is done. Unfortunately, Namine’s feet did not tolerate being completely rotated into the correct position, so they are currently about halfway from their old position to the position of a normal foot.

Looking ahead to surgery

Since we switched out Namine’s stoma gauze for Mepilex, she’s been almost completely free of coughing. Score one for the thinking parent. Pretty soon, though, she won’t need anything to cover her stoma, because she won’t have a stoma to cover.

A couple more videos

I had taken a bunch of pictures of Namine at dinner tonight, but apparently my phone decided they were corrupt. So, I only have one picture of her to upload tonight, posing for me with her princess wand. I did upload a couple more videos to Youtube, however.

Hi5 Namine!

Namine sat up by herself in the changing table again. She’s funny; sometimes she’ll refuse to accept any help, but sometimes she’ll be convinced that she needs it. Tonight was the latter.

Ramping up

We got a new couch over the weekend. Well, not a new couch. It’s new to us. And orange, if that matters. The poor couch we had before was definitely on its last legs (pardon the pun). We’d bought it before Namine came home the very first time, and for the first several months of having her at home, Jessica and I slept on the couch with Namine in the Pack ‘N Play. Those were scary times: the feeding pump, the trach, the low-O2 alarms. Back then, Namine didn’t keep her sats up too well. Her lower limit has always been 75, but unlike today (where she’ll reliably maintain above 85), she would barely maintain that lower limit. But I digress. The couch took more abuse than it was made for, and it was time for a new one a long time ago.