Jordan’s Story

Site created on October 4, 2020

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Newest Update

Journal entry by Dede Mogck

I can't believe it has been a month since our last post - life has been busy.  Jordan has been doing well and continuing to make progress, especially with her breathing.  The cuffless trach has been very good to her.  I can't remember the last time she needed oxygen - we have even left the house without taking it with us!  Recently she has needed less suctioning during the day. She doesn't need a fan constantly blowing on her or a cold cloth on her head at night - which she needed before.  She has been able to walk and climb steps without feeling so winded.  She is using a passy muir daily - and always asks for it in the morning.  So we are hoping we can move toward capping it again, like it was when she came home in January.

Jordan is climbing the stairs with assistance from Leah and me - she really seems to respond well to her sister's encouragement - it has been great to have Leah home!  She has wanted to be downstairs with family and so is motivated to go up/down the steps.  We have taken a few shopping trips which she loves.  I think just getting out of the house and seeing people have been good for her.  She continues to make progress in the use of her arms/hands but it is very slow.  The OT and PT have seen progress over the last few weeks.  If this keeps up and her health continues to be good she will probably switch over to out-patient therapy.  We are really excited because she has felt good enough to have her hair washed at bath time!  So nice.

Jordan did have her 25th birthday during this time.  We made the day special by doing a pedi/mani, going to the mall to shop and ordering in from the restaurant of her choice.  Also had a Ninja Turtle birthday cake and her Aunt Ellen came over.  She said it was the best birthday ever!  It stretched out a whole week with 2 more cakes as her Uncle Dan and Aunt Kathy came to see her that week and her cousins Josh, Kris and Anna came to see her too. 

Leah is helping out a lot this summer - she is doing physical and occupational therapy exercises with Jordan.  Jordan calls her coach and actually listens to her (at least a lot of the time! :).  She goes back to the Mayo for a neuro appt and tests in August - so we will see how that goes.  And continue to work toward getting the trach out and on OT/PT.  She also has lost a lot of weight so (I never thought I would have to say this) we need to work on putting a little fat on the girl!  

As always - thank you for continued thoughts and prayers!  L
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