Yesterday we had a very important doctor’s appointment. Ever since Elanor began to walk, she has had some issues with her right side (really, dating back to her side preference when crawling) her right foot wants to point down (almost like on an imaginary high heel) and her toes pigeon in more than what falls within the realm of normal. It’s why occupational therapy got involved, physical therapy got involved and why she was put into a brace. Our pedi neurologist was concerned as was the pedi stroke team.
But everyone, across the board, said that the decisions they’d made about bracing her and how often to wear the brace, etc were just temporary measures until a certain doctor weighed in. A doctor we would need to wait 6 months to see initially, which turned into 10 weeks after we had to switch appointments with another family due to our Singapore trip.
Dr. N is a specialist in kids with cerebal palsy. The only reason E doesn’t carry a CP label is that it isn’t technically diagnosed until a child is 2. What I hadn’t known is the CP is an umbrella term to describe a child who had a neurological event (such as E’s stroke) in utero or at a very young age that affects motor development (such as E’s foot issues). I feel weird using that term because if you look at her, she doesn’t fit any of the stereotypes…but it doesn’t mean that she isn’t still at risk for CP related issues (seizures, learning disorders, etc) even as her motor issues resolve. To be clear, it’s not that I don’t want that label applied to her…it’s that it feels disrespectful to families who are dealing with so many more struggles every day than we do.
Anyways, our first good piece of news is that she had reached 17lbs (7 and change kgs–too lazy to do the full math on that), which is a full pound up from Feb 3rd’s 16 lbs. I really feel like adding the appetite stimulant has been a major factor in her growth and that it may help us turn a corner with E’s weight struggles.
Then we went through all of E’s history with Dr. N’s colleague before spending a short time with the good doctor herself. The consensus was clear–that no matter how much the brace was the right one several months ago, today it is far too much brace. We have been instructed to cut her brace wearing back to 1-2 hours a day from the 4-6 we were trying for before, and we will need to see the orthotist that made her brace in order to get it cut down or thinned out or some combination of the two so that it isn’t doing too much of the work for Ella.
Obviously she couldn’t say if this meant that E would be unbraced by a year from now, but she seemed very happy with where E was, and seemed pretty confident that E would continue to do well.
Walking out of the office we passed 3 kids of various ages all in wheelchairs and with varying degrees of obvious struggle (beyond being in a wheelchair) and I blinked back a few tears realizing yet again (as I probably will for the rest of my life) how differently Elanor’s story could have ended and how lucky we are that she is the irrepressible evil genius in training that she is.