Pandasmom's Blog

living with PANDAS, not the furry ones…

From one Washington to the other October 12, 2009

Filed under: Uncategorized — pandasmom @ 4:37 pm

We have made it to the other Washington.  The stress level I feel is severe.  The trip itself was actually not that bad and A worked together with me very well.  She had all of her issues on the plane but they were tolerable.  John really took very good care of us in his packing.  I think I had shut down to some extent and luckily John was able to take over.  His packing skills got us comfortable through the flight.  Thank you, John. 

The direct flight was the right choice.  Neither A nor I were up for anything longer than that.  I do wish that we would have brought the stroller.  One of A’s symptoms is clumsiness and the amount of walking we had to do was difficult for her.  Not to mention the weight of the bags.  At one point, I thought I was going to have to carry A as well as all the bags.  But, somehow she pulled it together and we made it.  My expectations were so low that we exceeded them.  And now, here we are.

The hotel was very accommodating to us.  A and I were very happy to see our room and then promptly fell asleep.  We woke up a bit disoriented but refreshed.  A was very hungry so we went to get some breakfast.  The hotel had graciously given us a free breakfast and we ordered a nice meal.  A ate almost all of hers.  I was able to take one bite and that was it.  I seem to be unable to eat.  I should switch to milk in my coffee because coffee is all I seem to be able to consume. 

Now we are in the waiting room at the doctor’s office.  I have a terrible fear that she will deny us the procedure.  I was so confident when we were at home, but now we are here and I feel terrified that she will tell us we are fine and are not candidates for PEX.  I am unable to handle hearing that.  I look at my sweet child and want her to be well.  We were walking down the hallway from breakfast this morning and A simply fell over.  For no reason.  When she is sick, she is very clumsy.  I don’t want this and all the other problems associated with PANDAS to plague my child.  I just want her to have a normal childhood.  On the cab ride on the way over here she told me when she grows up she will be a doctor and C will be her nurse.  That is cute in one way and sad in another.  I would also like her at 3 years old to want to be the garbage man or a cook or a painter or something that all children at 3 years old have had exposure to.  Wanting to be a doctor is totally normal, but knowing you need a nurse to accompany you seems beyond a typical 3 year old’s knowledge.  Next, she will tell me she wants to be a phlebotomist. 

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One Response to “From one Washington to the other”

  1. Paula Says:

    Hi,

    I’m so glad the travel part has been better than expected. We also experience clumsiness and, in general, decreases in motor function with regressions. It’s funny that you mention that A wants to be a doctor. This morning, my little man asked me if I was a doctor before I was a mom. That made me very sad too. I’m sending all my prayers your way that A will be accepted for treatment and the treatment will be the answer. Take care…and EAT!

    Paula


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