First we had an audiology test and then an appointment with a developmental pediatrician.
She passed all the hearing tests except the highest frequencies in her left ear, which didn't surprise me, because I often feel like she doesn't hear me as well if she's turned to the left towards me. I'm pretty sure (without getting our her records) that this is the ear that her tympanic membrane ruptured in several years ago, too. No intervention right now - yearly audiology tests to make sure nothing worsens.
The appointment with the developmental pediatrician was interesting. She was very kind, but we didn't feel like we got a ton from the appointment. Basically it was an appointment to rule out autism. Natalee is not autistic - another pediatrician has suggested high functioning Asperger's before, (yes, they are now the same spectrum, I know that) and while I see several of those tendencies it's now very hard to discern between what is spectrum and what is just the way Natalee's brain works with CP. She said that she definitely sees the affects of CP on Natalee's body as a professional, but that one of our biggest battles forever is going to be that the world can't see it readily. While that sounds great, that makes it almost an "invisible" disability - one that affects her and us every single day but that others are quick to dismiss. That's hard. Not harder than having a profoundly disabled child but just *as* hard. The doctor also said she feels like a lot of what we see emotionally stems from having this disability that others are quick to dismiss because it's not readily visible. It's a fine balance - to work hard and push her to become strong and able and confident, and to help her find a place of acceptance and rest in what her body's limitations are.
I'm rambling..... my mom brain has thought a lot about this in the last 24 hours.
Yesterday the pediatrician we saw told us she definitely sees what we see but her professional opinion was that the spectrum tendencies we see are more CP brain than actual spectrum disorder. Either way, no further testing and no further measures other than following up with our CP team in STL as needed. We were kind of disappointed to learn that we were "accidentally" referred to the peds doctor that specialized in autism, when, as she told us, we should have been referred to one of the two that specialize in cerebral palsy. It was a six month wait to get into this appointment and overall we didn't feel like we got the best we could have out of the experience.
Our biggest concerns right now are pain management and overall physical ability, which we feel like our CP team is handling well. We were hoping to get tips for managing emotions, behaviors, and some feedback on what the future looks like for Natalee as she transitions to an adult and maybe independent living. Perhaps I just need to be more patient and let God unfold His plan for our Natalee, because I have no doubt that it's a grand one.
She and I went to these appointments solo - usually I don't go to "cities" without a driver, but as appointments in large cities are becoming more of our life, I have had to learn to put on my big girl pants and do what needs doing. Thankfully, I'm pretty comfortable in Iowa City and we managed just fine.
We even made it to Hurt's Donuts to pick treats out to bring home to the family and to the mall to hit Target - and then the food court for a couple treats for this big girl of mine whom I love ever so much.
Natalee, we love you. You are simply amazing.
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