Tuesday, February 8, 2011

new doctor(s) for Rhys

For the last several months Cody and I have been discussing the need for a more proactive approach to Rhys's CP. Our therapists are great for the most part, and we've seen a lot of progress from Rhys in the last 16+ months. But we still don't have any one person to call the shots, so to speak, in terms of managing Rhys's care. Doctors and therapists alike have commented on how much potential (for lack of a better word) he has, we just need to tap into it. The problem is we know little to nothing in terms of his CP. I mean we know his abilities and disabilities, but how to address everything not so much.

I've long been frustrated with the fact that everyone knows he has CP, but no one wants to discuss it. Of course they will if we bring it up, but I want someone who will look at him and say that's not good enough, we need to... We're increasingly becoming more knowledgeable about things (I've gotten a lot of good info from other blogs), but no matter how much we try to learn the information just isn't readily available. I hate to say it, but several times I've felt that since doctors don't expect much out of micro-preemies they are happy with anything above baseline. And, that's just not going to work for me!

So, in an effort to get as much information as possible we've scheduled with a couple new doctors to check things out. Nothing is wrong, we just want to make sure we've got everything covered. We're not impatient - honestly those of you who know something about this type of thing know there is little sense in being impatient, and that is alot coming from me as I'm the most impatient person I know - it is that there are limited windows of opportunity when these kids are young and we don't want to miss anything.

We have an appointment scheduled with a neurologist in April. I hate that was the first available opening, but hopefully they'll have a cancellation before then. If not, it isn't that critical. I am also thinking of getting a pediatric orthopedic doctor on board just to make sure everything is/stays in alignment, but I'm not sure that is necessary right this second. Lastly, I scheduled with a pediatric physical medicine and rehabilitation doctor. Lucky us, she had an opening yesterday afternoon so I bundled Rhys up and met Cody at their office.

First impression of the office, small and quiet with only one patient in the waiting room. Second impression, we didn't have to wait long after our scheduled appointment time to see the doctor. Third impression, the doctor was very friendly with no scrubs, stethoscope or lab coat and didn't look like she was in a hurry to get out of the room. In fact, we chatted with her for more than forty-five minutes.

In summary, she thinks Rhys looks great for a 23 week preemie and believes he has a lot going for him. He has good range of movement, good head control and a spunky personality that she witnessed first hand. On the flip side he has a somewhat weak torso and tone in his legs that is clearly preventing him from using them properly. To address the leg issue we are starting Rhys on baclofen, which is an overall muscle relaxant. Baclofen works by blocking nerve activity in the part of the brain that controls the contraction and relaxation of the muscles. Hopefully this will allow him to loosen up enough to engage and strengthen his muscles in the proper pattern. And if we can loosen up the leg muscles I'm hoping that will make Rhys be more comfortable in the sitting position. There are a few common side effects possible with this medication. They are minor - sleepiness, irritability, nausea/loss of appetite - but as you can see aren't exactly negotiable so we're hoping he doesn't get any of them or we'll have to switch meds.

The ultimate goal is to identify what exactly needs to be treated and how best to do that. The addition of these new specialities should take care of that and keep us on top of things.

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