That's interesting that the doc wants her to crawl, because most people want us to walk.  I hope the leg brace is one that bends at the ankle, because she may hate it if it's not.


Chester Worwa

--- On Wed, 7/8/09, JOHN RUNER <[log in to unmask]> wrote:

> From: JOHN RUNER <[log in to unmask]>
> Subject: Update on Mary
> To: [log in to unmask]
> Date: Wednesday, July 8, 2009, 6:40 AM
> Mary just finished a round of visits
> with her cardiologist,
> pulmonologist and orthopedic specialist.  The
> cardiologist said she still
> has a slightly enlarged aortic valve that is narrowing on
> its own and to have
> Mary checked again at age twelve.  We do have to keep
> an eye on Mary
> during play she said. The pulmonologist suspects even
> though May has good blood
> oxygen levels she has low lung capacity.  We took her
> for a pulmonary
> function test and just listening to the technician’s
> debate it seams to be an accurate
> assumption.  The orthopedic doc prescribed mary an
> ankle brace to keep her
> right foot from teurning in and tripping her. The orthotic
> technician said Mary
> walks fairly well and feels that the ankle brace should
> correct her tripping
> issue. 
> 
> 
> 
> We also had a sleep deprived EEG, but don't se the
> neurologist (couldn't see
> him at all yet) or pulmonologist until July 21rst. 
> All of Mary's docs
> thinks she either had a mild seizure or complex migraine
> that caused he to fall
> in May and they think her recent growth spurt may have
> caused her brain to
> "fall behind" in keeping up with her coordination
> needs.  We are
> fortunate that this group of doctors has dealt with Mary
> since birth.  All
> of her docs agree that her fatigue is caused by a
> combination of these medical
> issues and that it is unbelievable the school thinks she
> needs to fit their
> mold or be isolated instead of accommodating her.  
> 
> 
> 
> I think with some of this new information I feel that her
> Cerebral Palsy is
> more in the moderate than mild range.  On doc
> suggested we "make her
> crawl up and don the stairs instead of holding her hand and
> having her use
> the rail, but she hates  crawling and does not like
> going backwards at
> all" I just thought it was interesting that he suggested
> that.  We
> usually let Mary tell us if she wants help with something
> or not.  
> 
> 
> 
> I will give a new update when we receive the rest of the
> test results.
> 
> 
> 
> Thanks for listening,
> 
> John Runer-dad to Mary nine Moderate CP
> 
> 
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