Wednesday, May 8, 2013

Good day

Maggie was an absolute angel yesterday. We were at the hospital most of the day and she never complained. Not once.

We met with her neurosurgeon after the MRI and the good news is that her lower spinal cord (where she had surgery several years ago) looks fine. No more surgery needed!

One of the reasons she had the MRI is because lately we have noticed Maggie falling more and her right leg has gotten super tight. Her gait is not like other three year olds and, most concerning, she is still not potty trained. All these things are controlled by the lower part of the spinal cord- where she had surgery a few years ago.

I've been bribing her and guilting her over the last year to use the potty and, in the back of my mind, I had the fear knowing there was a real possibility she couldn't control herself and, therefore, couldn't be potty trained. Thankfully, the MRI cleared those fears. So we'll keep trying...

As for her gait and leg stiffness, he thinks she will always have that. He says the reason she is falling a lot is because she is trying more things, getting more confident, and the probability of her falling increases with that.

Frankly, it's hard to hear that your daughter will always struggle with walking and running and movement in general, but I kind of figured that was going to be the case. Her leg brace and shoes and, of course, therapy will help her compensate as she gets older. But as grateful as I am for everything else we've been blessed with, it does hurt my heart to hear that. Whenever I see her around her peers it pains me even worse, because the older they get, the more that physical gap widens. I see it at playdates and at the park all the time- Maggie will often sit on the outskirts and watch because she can't keep up with other rambunctious three year olds. I'm sure she also fears being knocked over (which happens often). No parent ever wants their child to struggle or be left out because of physical issues, even the ones who know they should just be thankful their child is walking at all. It still hurts.

In other news, he told us he thinks she needs to wear her halo brace more than we are doing now. So now we have four different doctor's opinions on how much she should be wearing it and they are all different! Very frustrating, but like so many things I will just have to go with my gut because, as this renowned neurosurgeon said today, Maggie is a mystery and has never fit into a box when it comes to diagnosing her. He said he can't give us any more direction on her neck because he just doesn't know....

But to end on a positive note, he said he was blown away by how well she was doing overall. He laughed as Maggie talked and played with the huge stuffed dinosaur he keeps in his office. He said he never expected Maggie to do so well...not in a million years. Thank you, Lord.

No comments:

Post a Comment