Namine’s stay in the hospital to have the pins taken out of her feet this past Tuesday went much smoother than anticipated. We’ve always been told that she always has to stay the night – at least one night – because her heart needs to be monitored. Imagine our surprise (and excitement), then, when we were told she could go home that same day!
Namine actually had more done than just the pin removal; she also had some urology tests done to determine whether she could be potty trained. We already know she wants to be, but as to whether she had the control, we didn’t have any idea. (Patients with caudal regression, remember, can have some significant problems with incontinence.) We’re still waiting for the full test results, but the doctors seem hopeful. Namine appears to have more control that previously thought. (Oh, Namine exceeding expectation? That never happens! [Yes, that was sarcasm.])
The previous evening, Monday, Jessica and I had a whole two hours’ notice about a meeting between all the parents and the teachers at Namine’s school. Starting off great, kids. Just great. I really don’t want to fill this post up with vitriolic ranting, but suffice it to say that we were concerned that this school would not be good for Namine.
So I had another meeting with the teacher, the aide (who will take care of Namine’s diaper-changing and help her in and out of chairs when she needs), the school’s speech therapist, and the nurse. It was in this meeting, which Jessica couldn’t make because Namine needed to get shots, that I clarified Namine’s needs and the requirements set forth in her IEP.
Interesting note: these women seemed just as surprised as every [expletive deleted] doctor ever that I took such an interest and involvement in my daughter’s medical needs and education. For [expletive deleted]’s sake, do no fathers participate in their children’s lives anymore? But I digress.
I clarified for them the symptoms that would manifest if Namine’s Fontan drew alarmingly near, how stoic she is toward the nature of pain, and other insights into her that would help them help her all the better. One of the concerns Jessica and I had taken away from the initial meeting was that Namine would once again get stuck in a small class of mentally special needs kids – nearly all nonverbal. But I was assured that that’s not a concern; Namine will be involved and will participate in the normy class.
The teacher agreed (to my relief) that while Namine has physical special needs, and while she may have been scored as intellectually “low-average” in her IEP, she is still a normal child with normal educational needs. Her need for speech therapy will not be ignored, of course, but that will not detract from her involvement with the class at large.
You are welcome to exhale with me a huge sigh of relief.