"I should not talk so much about myself if there were any body else whom I knew as well."
-Henry David Thoreau

Tuesday, December 3, 2013


Enjoy the 70 degree temps while you can, because the ice and snow is coming.  The latest report from the news is that we could have close to an inch of ice on Thursday before the snow arrives on Friday and could have 3 inches of accumulation.  I know that’s not a lot to some of you, but for Northwest Arkansas it is the beginning of winter and will likely cause more than a few road issues.  Fingers crossed that the ice won’t be so much as to take out power lines and trees. 

I am home every day with Alex anyway, so the road issues won’t be a problem for me.  I’m hoping Drew will have the option to work from home on Friday if need be.  I know that Alex will be tickled to see some white stuff outside and we will enjoy our view from the front window. 

Miles.  Working on the elliptical doesn’t do much to add to my mileage total.  It takes me half an hour to get a mile, which I was feeling pretty bad about until I realized that that’s not unusual.  (I typically have a 12-15 mile on the treadmill.  Hey, I said I ran and walked, I never said I did it fast.)  If you have never exercised on an elliptical, it’s a bit like skiing through the muddy swamp.  Or maybe riding a bike, while standing up and working your arms, through the sand.  It’s a lot more work than just walking, so it takes more effort and time for me.  After 10 minutes I find myself wondering how much longer I can go and after 30 minutes I am happy to hop off and rest my quivering muscles.  Anyway, I get to add about a mile to my total each time I work out at home.  I went to the gym yesterday and added a few miles on the treadmill.  I’m just a smidge away from 190 miles, so I’m definitely going to hit (and probably surpass) my 200 mile goal.  I’m thinking that my 2014 goal will be in hours and not miles.  That way I can work out in different ways that don’t measure distance.  I may amend this, but I’m thinking that I will shoot for 150 hours of active and intentional exercise in 2014.  That would be just under 3 hours a week, which is quite a push for me.  I would say that I probably get in 1.5-2 hours a week now, so pushing it up to an average of 3 hours a week would be motivation to add an extra day or two or just to push on a little longer for each workout. 

For the record, Drew & I are loving the new mattress.  This Serta mattress comes with a 120 day guarantee, so if we decide it’s not absolutely perfect for us then we can exchange or return it.  I don’t anticipate that happening, but when you make such a large purchase it is nice to know that there is a guarantee to back it up. 

Alex is sleeping well lately.  Her congestion has been much much better for the last few weeks and that is a blessing.  Yesterday she was a bit more stuffy, but it didn’t cause any problems.  On a day like today, when the weather is so lovely, it is terribly tempting to put her in the stroller and go for a walk, but I’m not going to.  I am absolutely unwilling to take a chance on stirring up her allergies when we have been doing so well.  As for other things, I am quite certain that this has been a decline (PKAN related, of course).  Her twisty body, general discomfort and protruding tongue are the biggest indicators.  She grits her teeth some and that bothers me and Drew because of how Emma struggled with gritting and tongue biting.  Biting hasn’t been a real issue with Alex and I think that part of that is because she has a tiny tongue and high palate.  Emma had a big tongue and tiny mouth, so there was nowhere for her tongue to go when her teeth clamped down without her permission.  Anyway, I guess I would say that this decline started in mid October and has lasted through November.  I haven’t noticed anything new happening in the last week or so, so maybe things won’t continue to decline and will, instead, plateau for a good while.  Let me take the opportunity to clarify, again, that once a decline happens there is no going back.  What happens during a PKAN decline is just how it’s going to be.  She may adjust to some of the changes and cope with them better, but they won’t go away.  A plateau just means that things shouldn’t get worse for a while.  The summer decline was July & August and she got September and part of October as a plateau until this most recent decline.  That is really not a very long plateau when compared with her previous history.  I’m praying that this next plateau will give us a good long break from any new symptoms. 

As Drew and I have always insisted, PKAN is just one little part of Alex.  Outside of the unavoidable alterations to life because of PKAN, Alex is happy.  I called Grandpa this morning, just to talk.  Alex was using her computer to remind Grandpa that her birthday is almost here and that she will be 11 years old.  Then she wanted to tell him that we put up our Christmas tree.  Right now she is asking to play games, so I best start wrapping up here.  Oh, and I need to go through her bookshelf and find Christmas books for us to read.  As for her letter to Santa, it needs to be written soon.  We have been talking about it and I think we have decided that asking Santa for an iPad isn’t necessary.  It would be fun, but it is a very large expense for the big guy and we would be just as happy with new games, books and maybe a few clothes.  Alex agrees whole heartedly.  Maybe we can still borrow an iPad from time to time and enjoy it that much more as a treat. 

Okay, I’m off to switch the laundry (it’s out of control again) and play games with my girl.  Love to you all. 

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