Every so often, I’ll come across a post or a tweet from other special needs folks that will inspire a post of its own here on our site. In this case, it was a retweet from Barbara of TherExtras: “How do you communicate with your child with no words?” To be fair, the author of the original tweet has a nonverbal child – unlike Namine, who was merely delayed in her speech because of the trach and jaw issues. Since all of these issues have been resolved, Namine can learn to speak, and she is. But it wasn’t so long ago when things were different.
Namine woke up at about 1:30 this morning, wheezing and gasping for breath. She started hacking and coughing more because she was panicking, unable to catch her breath. She threw up twice, mostly just mucous from drainage. We did a couple breathing treatments, one to clear the crap out of her airway, and the other was a steroid to reduce any swelling and enable her to breathe easier. We called CHW’s special needs line, and let them know we were bringing Namine in to the ER. We checked her pulseox – 86 and 170. The heart rate was way too high, but we were surprised that her O2 was as good as it was, considering her distress. We left the apartment around 2:00.
Yesterday was a pretty fun day. Jessica, Namine, and I went over to my mom’s house for lunch. My dad went out and got a sled for Namine, and he ran around the front yard with a bundled Namine in tow. (I would have loved to do the towing, but I was stricken with a ginormous migraine.) My mom did most of the picture-taking; I will upload a bunch as soon as I get them from her. But now, it seems, that all fun has passed and we are paying for it, with interest.
This is especially true for raising a special needs child. After all, there are plenty of how-to books on raising kids, but what if your child has a learning disability? Stimulation or sensory issues? Physical disabilities? No two cases are the same, and even something more common, such as autism, cannot be addressed with a generalization.
Namine’s cough has been pretty nonexistent lately; during the night, at least, we haven’t heard her cough at all lately. But this morning, when she woke up, she was coughing deep, throaty coughs, and they were bringing up phlegm. Afraid of repiratory distress, Jessica called the pediatrician and set up an appointment. It was a bit short notice, but they were able to fit Namine in at 11:30. She also checked her O2 saturation level – it was pretty good, at 87 – and called Children’s Hospital’s special needs line, just to be on the safe side.