Mayo Moments

Monday, 13 August 2012

A Weekend Away from Mayo

Hi everyone!  And a special hello to the staff and customers at Kay's Korner Variety!  A little bird told me our updates are being shared at the store!  Thanks everyone for your care and concern.

At Leah's appointment on Friday we learned we were being booked to see a Hematologist.  It would seem that Leah has also been experiencing an ongoing cycle of low neutrophils.  Her neutrophil level this week was in the 800s.  Normally it should be over 1400.  Looking back over the last 3 years of bloodwork we had on hand, a pattern of low and then normal levels can be seen.  This is called Cyclic Neutropenia.

My understanding at this point is that all three issues - Neutropenia, Negative Myoclonus and Hashimoto's can be attributed to autoimmune issues.  When I asked the doctor if they could all be cause by the same issue, I was told it was possible but not probable.  Now personally, I can't wrap my head around Leah have three separate and distinct autoimmune disorders.

On one hand, I am extremely glad we didn't make the trip all the way to here to be told "there is definitely something going on but we don't know what".  But on the other hand, being presented with three test verified disorders is overwhelming and a little daunting.

So with that in mind, Leah and I played hookie this weekend, we rented a car and drove to Minneapolis.  We spent Sunday at Nickelodeon Universe and Monday at the Sea Life Aquarium.  Leah had a great time  at Nickelodeon Universe, it is perfect for someone her size, she got to ride on every single ride - and some of them made the adults scream!  :)

 But I think she may have overdone it on Sunday.  She spent our entire trip to Sea Life and the Mall of America today in a wheelchair, curled up in a sweater and under a blanket.

She has been having some small episodes - I guess I can officially call them seizures now.....throughout the week we have been here, today's we can classify as an average one.  She was able to stay awake, but not as engaged and definitely not showing the enjoyment she normally would have.

Tomorrow we speak with hematology and find out what Cyclic Neutopenia means for Leah.  And, if all goes well,  we will be heading home in the evening!

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