I was thinking about this the other day, and I thought it might make a good post. I feel it’s especially appropriate today, it being Rare Disease Day, according to the Center for Rare Diseases. You know Namine has DILV – double-inlet left-ventricle heart defect – and that’s rare enough, I suppose. But she also has CRS – caudal regression syndrome – and as far as physical limitations go, it is certainly the more apparent disability. But as serious as Namine’s disabilities are, she is doing exceedingly, exceedingly well. We were in the grocery store yesterday, and Namine was being her normal hyper self – singing and talking and kicking her legs. I thought to myself, you know, I wish I could write a letter to Jessica and myself when Namine was first born, when we faced the daunting and crushing prospect of a dying child – a disabled child, unable to do anything by herself. It was a time when we were promosed nothing but crushed dreams, a time when we faced nothing but dispair. If I could write to that couple and reassure them that God was still watching over them, that He had in mind nothing but to show His power through their tiny, fragile daughter, I would. Of course such a thing is impossible; but I think it’s good to reflect, to acknowledge what you have and give thanks for it. So here goes.
As we get closer to the Fontan, we have to learn the symptoms of low blood-oxygen levels.
Yesterday morning, Namine proved that all the therapy with her legs and feet is paying off. She stood up in her crib. Now, to clarify: she cannot yet stand up on her own; she needs something to hold on to, but she is able to pull herself up with more ease each day. But Namine had never before attempted to stand up in her crib, and she usually doesn’t try to stand unless either Jessica, a therapist, or myself are present. The fact that she is willing to attempt it by herself tells me a few things: she is becoming even stronger, physically; she is becoming more independent; and perhaps most importantly, she is becoming more confident in her own abilities.
An alternate title for this post could be “crossing our fingers.” If you recall, the last time Namine went to pool therapy, she came down with a crazy fungal ear infection. She only finished recovering from it not toon long ago. She’s still on antibiotics for something else, too, but her ear is at least completely healed. Unfortunately, I was stuck at work during the actual therapy time, so I’ll tell you all about it after Jessica tells me how it went.
Namine slept better last night than the night before, thankfully. She still coughs occasionally – and sometimes hard enough to make us think she’s going to throw up – but while asleep, thankfully, she seems to be free of it. She didn’t wake up screaming last night, but I didn’t make her keep the braces on all night, either. Perhaps I simply don’t have the resolve of her therapists. But it’s not their child.
I was up until about 3:00 this morning making sure Namine was sleeping all right. She’s had this cough, and it seems to get worse when she’s asleep. Even though she had a nap in the early afternoon yesterday, she was still cranky and tired. She didn’t eat much for dinner. Although her appetite for pot stickers seems to be rather fickle, she’s nearly always ready for some noodles. But she didn’t even feel much up to eating noodles for dinner. So I gave her a glass of that Carnation Meal-In-A-Glass (I don’t remember what it’s really called) and got her ready for bed.
I’d love to know what punk gave a “thumbs down” to Namine’s vampire video. You know, the one where I repel her with garlic. If you can’t have a little fun and laugh every once in a while, what point is there to life? Ah, but I digress. I have posted a couple more videos, so click the link and enjoy.
As promised, here is another video. Jessica played the Batman theme on her phone, I supported Namine, and Namine herself danced. It doesn’t get much better than this. :)
Namine has an appointment with her pediatrician today, but as I haven’t heard from my love how that went (if it’s even over yet), I’ll talk about something else. Ellen from Love That Max tweets: “When doctors tell you bad things – and they are WRONG. My cautionary tale.” She’s got a point. Doctors get things wrong all the time. My dad likes to say, “that’s why they call it practicing medicine.” Funny, but true. But what’s not funny is when it could turn your whole life upside down. It could result in worsening sickness. It could result in death.
Jessica took Namine in to see orthotics today. Namine’s AFOs have been bothering her lately; she can’t seem to tolerate anything more than four or five hours in them, when she should now be able to wear them all day. They figured that the braces just need to be adjusted – growing girl, you know – and that should fix the problem.