vanarnhem411

Sunday, January 04, 2009

Questions

Just to answer a few questions on Brooke's swimming -

She does hold her breath when she puts her face in the water - it seemed to be one of those things she knew to do instinctively at first. She's built up the amount of time she can "stay under" the longer she swims. I would imagine this would be different for every child - her little sister is way more timid about putting her face in the water.

I honestly have no idea what Karyn's formal training is - she is not a licensed therapist (like an OT or a PT). Her title is adapted aquatics instructor - but I don't know what kind of training that entailed. We found her by recommendation and just really, really lucked out. Although she had never even heard of Rett Syndrome before Brooke was diagnosed she is better than just about any licensed therapist we have worked with at getting Brooke to respond and do things.

And the water she swims in is very, very warm - pretty much like swimming in a giant bathtub. She only gets cold when we get out of the pool and into the locker room where it isn't as warm. But nothing her nice cozy bathrobe and a quick dressin' mama won't fix!

And while I'm at it I'll update everyone on the old post about Brooke's g-tube and ph probe. The probe ended up showing - no reflux whatsoever. That's my little exon 1 girl always bucking the trends! (Exon 1 is the location of Brooke's mutation on her MecP2 gene - and it's very rare to find mutations there so we always chalk up her differences to the typical Rett kid to that).

And the little booger gained 5 pounds before our next clinic visit so the g-tube was put on hold too. I have to say there was a big relief that we didn't have to have the surgery but also a wee bit of disappointment because I had really convinced myself it would be a great thing for her. She's been holding pretty steady at that rate and for now Dr. Motil is happy with it. And when Dr. Motil is happy, everybody is happy!

3 comments:

Doris said...

It's so funny, I often think it's more about connection, chemistry and empathy rather than formal training. Our best SLT was did not have formal credentially either, but was the best I've ever seen for Edda.

Doris said...

It's so funny, I often think it's more about connection, chemistry and empathy rather than formal training. Our best SLT was did not have formal credentially either, but was the best I've ever seen for Edda.

Jennifer said...

It sounds like Brooke is doing really well and her mama is doing a great job! Glad to hear you found someone she responds to and that she has had good weight gain.