Thursday, March 29, 2012

It's All About the Schedule

Outside of this information overload on CDKL5 I am currently experiencing, there are some things I need to log before my mind bids them a final farewell.  I have been perusing a few different areas of my disability community, poking my toes in the waters of things outside epilepsy foundation and low-vision realms.  I am still a committee member for the Northern Colorado Strides for Epilepsy 5k but trying to distance myself from support group moderation as best as I can.  I would probably set up tent and camp out forever at Anchor Center, the last of our friends will be graduating this year so I foresee less time there…I can’t believe how fast they grow!

I took the opportunity to jump on a committee at Children’s Hospital Colorado with in the Process Improvement Department.  Last Thursday morning I was able to show up at 8:00 in the morning and participate with a small group forming a “problem statement” for scheduling in the neurosciences department.   My fellow supermom, Deana, is also participating in the process.  It is nice to be active at the hospital in the spirit of improving patient care in lieu of receiving it.  Also delightful to know they are putting this investment into said improvement.

The project will eventually be broadened to the entire hospital but is starting with neurology.  Those of you that access neurology don’t need an explanation why it starts here, be sure to message me anything you would like to share with the committee to help improve scheduling processes and broaden the options available to make timely appointments with providers.  They are not only interested in hearing about the bad stuff but curious how those of us that have hung around for a while manage our scheduling either directly with M.D. or their personal nurse or scheduler, using different mediums like email, pagers, cellphones, etc.  This is a great group of folks; Dr. Green from neurology, P.A. from neuro-psych, the operations manager from the 2nd-3rd Floor outpatient pavilion, and a handful of wonderful people from the process improvement department are participating. 

Something else that has been in the back of my mind for some time now, involves sibling support.  As Aliza grows, I see a need for her to find other siblings to air her grievances with as I do with my support groups.  Way back in January I attended a Sibshop workshop, sponsored by the STAR center (or perhaps the SPD Foundation but they seem to be one in the same) in the South Metro area.  I could only squeak away for one day but in hindsight wish I had signed up for the second so I could have learned more about becoming a facilitator.  Lucky for me a couple of my supermom friends attended the second day so they are armed and loaded!  It was a great experience; Lucy Miller participated in the shop also.  I never figured I’d get the chance to do the wishy washy with her, I have the upmost respect for her and Ms. Ayres in the OT world.

There were also many agencies there so I hope to see these popping up all over the metro area, our taxpayer dollars were hard at work getting folks trained to do so…DENVER OPTIONS had an entire table there so put the fire to their feet if you receive their services and haven’t received word on a sibshop near you.  There is already one up and running in Ft Collins but Aliza is too young to participate in it.  Best thing I took away, if someone claims to provide FAMILY care…they better have something for the sibs!

Next week is Spring Break.  I will have an extensive update on the new diagnosis once I have had some time to ingest everything and speak with the doctors in clinic and a bit more to other families I’ve been in touch with.  I am confused about how a single gene like CDKL5 that might tell a whole slew of other genes incorrect processes, can be tied to MeCP2 unconditionally.  It’s not that it matters to me only my gut says they are really two different things.  Back in April the same M.D. that called me to give this very diagnosis talked about how she would be the most unusual Rett’s case she’d ever seen.  They also tested her for MeCP2 as a first round option at that visit so I know without a doubt that her MeCP2 gene is fully intact.  I really don’t want to start attending a specialized Rett’s clinic and find out in the next year or two, not the appropriate place to be.  Identities are tough to gain, and sometimes tougher to shed. 
Genetics is so fun to learn about.  :\
I hope to quickly acquire a better understanding of who the research clinicians are in the CDKL5 world as I’d like to see someone a bit more familiar with it than I feel CHC is at this time.  After all, it has been nearly 7-years of testing, 3-round minimum of MeCP2 so I question what kept the CDKL5 out of the mix so long.  Other than they are just becoming familiar with it and that is okay, I just want a chance to speak to the folks most interested in the gene.  It was only discovered a year before her birth and there is even less information than zeb2 it seems.

Happy Spring, bring on the rain and take back the wind!

No comments: