We took Hannah to the physiatrist for another appointment this morning and anticipated making a plan for botax. Good news: he thinks her range of motion is really good and doesn't think there's a big need to do it right now! The other good news is that if/when we do go the botax route, sedation is available if we decide we want it for her. He gave some solid reasons for/against which made a lot of sense to me, such as:
-Sedation can help a lot if a kiddo is super anxious before and throughout the procedure
-Doing it without is a 20 minute procedure in his office versus 2+ hours in the hospital and with nothing to eat or drink at least 12 hours before
-Whichever route we choose, he'll support it and be happy to do it for us
My feeling at this point is that we'd try to do it without sedation first and see how she does. If it becomes a nightmare for her and us then the next round we'd sedate her. I'm just glad we have options and don't need to travel to Boston to have it done, which is what I was afraid might happen.
The other good news that came out of the appointment is that he thinks because her range of motion in her feet/ankles is so good, the next AFOs Hannah gets will have hinges. This is great because it means she doesn't need that added support.
I think all the work we've been doing with her must definitely be contributing to how well she's doing, because at our last appointment he thought we would definitely be ready for botax but now he said we can wait. Stretching, strengthening exercises, hippotherapy and swimming are worth their weight in gold around here! Summer weather definitely helps also. We're a pretty busy, active family.
The hard part of the visit (and there's always a hard part) is when the PT asked about our equipment needs which led to a discussion about adaptive strollers which meandered into the talk about the "w" word: wheelchair.
It even takes my breath away to just type the word so you can imagine how I'm feeling about it.
The physiatrist was quick to jump in and say that first of all, this was not something we needed to think about right now. And second of all, it might be something to consider only if we got to the point where Hannah was doing great with walking indoors or at school or short distances, but needed extra help when going longer distances and would rather propel herself versus be propelled by someone else (like in a stroller).
It all makes sense but I never in a million years thought we'd be talking about wheelchairs. For me, that feels like the last frontier, the "yes your daughter is handicapped" place. More so than the handicapped placard, the walker, the adaptive seating.
I will have to do a lot of processing, mulling over and crying about this before I can come to a place of acceptance. For now I think I'm just going to put it on the backburner and focus on what great things our girl is doing now. And hope that somehow either she can manage to make her way in the world without one, or I can figure out a way to be okay with it if she does need one.
2 comments:
I never liked the W word either...I just call it a stroller. My son learned how to walk when he was 5 and a half and we got our first adaptive stroller when he was 3. He's now 8 and still needs the "stroller" for trips to the zoo, big malls, etc. Look at the bright side: you can usually find somewhere to park with that handy wheelchair sticker.
Carla
I'm sure it is a delicate and challenging balance: promoting progress while still trying to foster independence.
I've enjoyed reading through your site, and not sure where to post this, so I'll put it here, if that's OK.
My favorite Aunt has cerebral palsy. She had moderate mobility and language challenges as a child. But I've only know her as an adult...one with 5 kids and 12 grandkids; one who ran a daycare and started a business making wedding cakes; one who realized after her last child left home that she had never conquered her last "independence" issue and got her driver's license at 54 years old!
In all of the pictures here, I can see the pure joy with which Hannah approaches each and every day. And with the love and support you, B and Isabelle are providing her...she is destined for an incredible life!
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