The medical pedestal

We met with the physiatrist yesterday and I didn't cry until the appointment was over, which I was grateful for. Not that I think there is anything wrong with crying over anything, especially not discussions about your child's limitations. But I was glad I didn't cry during this appointment because the physiatrist turned out to be a pretty arrogant, dismissive guy and I didn't want to be vulnerable in front of him.

It was really unfortunate, because I went into the appointment with a lot of hopes and expectations that we would get new and valuable information, access more resources, and come up with a clear game plan. Instead I left feeling totally overwhelmed and lost, like I'd just been run over by a truck. I acknowledge that I would probably feel this way to some degree even if we met with the biggest warm-fuzzy in town. But I also think (and B and I are in wholehearted agreement on this) that this doc could use a big lesson in humility. Parents are already traumatized when they have to go to a rehab clinic for their special needs kid. It is even more traumatic when the person to whom they are looking for advice, suggestions, and hope is looking down on them from a holier-than-thou pedestal, cavalierly throwing out diagnoses and prognoses and procedures.

B and I are tossing around the idea of telling this doc, next time we meet with him, that while we respect and appreciate his expertise, his approach to us was not very helpful. We will be meeting with him and others in his group several times a year and I just don't think I can tolerate another visit like the one we had yesterday. Obviously he isn't going to have a major personality overhaul (too bad, huh?) but maybe he'll be a teeny tiny bit more down-to-earth if we're direct with him about how we feel. We'll see.

Anyway...obnoxious personality traits aside, more about the visit...

So, we did get a diagnosis of cerebral palsy, spastic diplegia type. It didn't surprise me and I was relieved to hear that he thought she was diplegic and not quadriplegic, because that means she is less involved and more likely to have a better chance at independent mobility. But even though it didn't surprise me, it still crushed me to hear it finally formalized.

Next week, we're taking Hannah to be casted for orthotics; not the typical AFOs but a more low-profile SMO which I guess doesn't come up that high on her leg, since she is still so small and can probably start out with a more minimal approach.

We're going to order her a new walker because the one we have doesn't have swivel wheels, so she can only go in a straight line. Right now this isn't a big deal but someday, hopefully soon, it will be.

We have to get Hannah's hips x-rayed, which she hasn't had done since right after she left the NICU. I can't remember why exactly he said we need to do this, but something about the unequal length of her legs and needing to keep an eye on it and making sure her hip sockets aren't totally out of whack.

Botox injections to loosen spasticity in Hannah's muscles may be in her future as well, but he didn't feel we needed to go that route just yet, as she has good range of motion and is able to work through her high tone enough to make progress toward walking. But as she grows and her bones lengthen, her muscles may not lengthen along with them and this is when botox would probably be most useful.

We're going to apply for a version of Medicaid that isn't income based, but based instead on disability. This will hopefully mean that we get more financial assistance with equipment, procedures and appointments than we're eligible for right now.

We're going to apply for a handicapped parking placard. This would have seemed almost ridiculous to me prior to this appointment, to which we lugged both girls, Hannah's walker and her push wagon. I think right now, for most situations I won't need it. But someday we might bring Hannah's walker somewhere and also have the stroller. Or have other equipment. Who knows. I would probably not have thought of this myself, at least for awhile, but at the clinic yesterday they had a form where you could ask for help with different things, and getting a handicapped placard was one.

We're also, with the help of Hannah's OT, going to look into adaptive swimming, yoga and hippotherapy, all of which can really benefit kids with muscle tone, balance, and postural problems. I've been thinking about finding a new activity to do with the girls so I'm excited to learn more about what's accessible in our community.

All in all, it's a lot to digest. I'm reminded again that we are really living in an alternate reality from most parents, which is sometimes easy to forget when we're just going about our day-to-day routine.

Thank God the girls are so stinking cute (if I do say so myself!) because they make it all bearable. Today I was holding Hannah's hands while she walked around the house and she kept looking up at me and saying, "I walking. I walking." Yes love, you are.