Text Box: F r i e n d s   o f   P a t   |    T H A N K   Y O U   F O R   Y O U R   S U P P O R T

A note from Marianne

Text Box:            January 1, 2008


2008.  Wow!  It’s hard to believe it’s  
been almost two years since Pat had 
His accident.  This new year brings with
it the joy of knowing that we will be
bringing Pat home to stay soon and
the hope that this will be a year of 
much improvement for Pat.  The 
addition is moving along to completion
at a rapid pace, with the plumbing 
and electrical being installed as we 
speak, next steps being the insulation
and drywall.  We’re thinking maybe 
8 more weeks before the big day!  
We are so excited and extremely 
thankful for all who helped make 
this happen!

Next Monday, January 7th, Pat will be once again participating in the adaptive ski program at Crotched Mountain.  If anyone wants to come up to ski for the day and meet up with us, Pat will be on the mountain at around 2pm.  With all the snow New Hampshire has gotten to date, the skiing will no doubt be incredible.  It turns out that one of Pat’s aides is a ski racer and will be going with him down the mountain.

Nothing yet on the status of Cleveland Clinic; we have to send them a 5 – 10 minute videotape of Pat and the next step would be for him to go out there for a month of observation, should the videotape confirm that he is an acceptable candidate.  We have our fingers crossed that what they’re looking for in the tape will be there.

Pat keeps inching ahead in his progress.  He’s currently working with the speech therapist in a free water protocol.  The idea is to encourage his swallowing by offering him water by spoon several times a day and eventually allow him to take in all of his hydration by mouth, rather than by g-tube.  Hopefully this will be followed by food trialing again, which, was put on hold.  Pat was fitted with some arm and leg splints to help break his muscle tone and to increase the bend in his right leg.  He’s doing very well with both and there is a noticeable change in the range he now gets in his right leg.

We took Pat to Connecticut last month to be fitted with prism glasses.  He looks pretty funky in them they have very thick lenses – a sort of Harry Potter look.  The glasses are designed to help correct a midline vision shift issue and encourage his eyes to work together.  We are seeing a nice correction in this area and it is expected to increase with extended wearing time.  Pat also was worked on by a fantastic occupational and speech therapist during the 3 day clinic.  We hope to continue treatment with this group in the spring for an extended period.

We also have decided to put Pat on a “drug holiday”, in order to assess how well the medications he takes are working and to try to eliminate any that are not effective, especially the ones for muscle spasticity, which are quite sedating.  We have so far been successful in completely backing him off one such drug, with no noticeable changes to his tone.  His alertness has increased, his eyes are clearer…we may be on to something here.

On the weekend, Megan (aka Nurse Betty) continues to perfect her nursing skills with Pat.   She prepares and administers all of his meds as well as ranging his arms and legs many times a day.  Thank God we have her, she will make a terrific nurse one day (and her clinicals will be a breeze!)

We wish all of our friends and supporters a New Year filled with love and we have high hopes for good times ahead!

 
Love,
Marianne, John, Pat, Megan, and Kevin 


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