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

Tuesday, September 3, 2013

It’s Monday, but it’s not

Here’s to a long Labor Day weekend.  Here’s to a Tuesday that feels like a Monday.  Of course, being a stay at home momma means that Monday doesn’t mean an awful lot… not like if I was in the work force.  No matter, my days are already mixed up and will likely stay that way all week.  All day yesterday I was convinced it was Sunday. 

Drew stayed super busy this weekend, getting things done around the house.  As always, the yard looks beautiful and manicured.  We also cleaned up the girls’ room, cleaning out tons of toys & stuffed animals that we have been hesitant to get rid of before now.  The fact is that Alex either doesn’t or can’t play with so many of those things, and they are just that… things.  Of course we didn’t get rid of everything, just much of the excess.  One big thing for me was clearing out a good deal of the pillows and stuffed animals that cluttered Alex’s bed.  Changing linens is significantly more difficult when dealing with that hoard.  Drew also raised the beds, putting the slats back in so that the mattresses sit higher.  When the girls first got these big girl beds, we removed the slats and sat the box springs directly on the floor with the bed frame simply sitting around the mattress.  This was for their safety and convenience while they were still crawling in and out of their own beds.  Putting the slats back in and raising the mattress makes it easier for me to get Alex in and out of bed without leaning down so far.  It looks very grown up and much less cluttered, so that’s a good thing.  Of course, dealing with so many of Emma’s things was a bit difficult, but after cleaning out we made up her bed again.  We will leave it that way because it is their room… Alex & Emma’s.  It would really upset Alex to change that. 

I’m sure it’s been a bit obvious that I’ve been out of sorts lately… wound pretty tight and frequently getting weepy for no good reason.  (I mean, really, there’s no good reason to cry over a music video or while watching Duck Dynasty.)  For about a month I feel like I’ve been riding the line between crazy and sane.  Of course, I mean no offense by using the word ‘crazy’.  If someone else called me crazy then I’d probably be offended, but I’m using it affectionately when speaking of myself.  Drew would never use that word when speaking to or about me, but he has definitely been concerned.  I’m working on it and feeling a bit better.  Yesterday Drew decided that I needed a project.  He is concerned, rightfully so, that I do something besides sit and hold Alex.  So… I tiled the bathroom backsplash.  I’ve been talking about it for a year and haven’t done it.  We had leftover tiles from when we did the kitchen and I thought it would be a nice touch in the bathroom.  Cheryl inspired me a bit when she sent a picture of her newly painted (and adorable) bathroom.  I put a quilt in the hallway for Alex and she was my cheerleader.

photo (18)  

Perhaps we should start calling her DJ Alex, since she so loves her music.  Yesterday’s tiling soundtrack was the Kids Bop version of “Who Let the Dogs Out”.  Talk about a throw back!  Her other current favorite is YMCA.  FYI, doing the arm motions is quite difficult when her right arm doesn’t bend.  She still thinks it’s hilarious to try.  I joked her that she could be one of the Village People for Halloween.  Hey, we have three dogs, so perhaps Alex, Toto, Mac & Foose could represent that famous (and slightly disturbing) foursome. 

Back to the bathroom… it didn’t take me long to put up the tile.  Tonight I will grout and then in a few days I will seal the grout.  Of course, putting up the tile just means that the bathroom needs to be painted.  It is the only room that we didn’t repaint when the house flooded in 2011, so it needs a fresh coat anyway.  I don’t necessarily enjoy painting, but I really love the fresh feel that a coat of paint can give… and for little money. 

One of my favorite websites (and facebook pages) is www.becomingminimalist.com  It often has some great articles, giving perspective on living a more simple and satisfying life.  Today’s article is “12 Intentional Actions to Choose Happiness Today”.  It’s nothing new, really, but they are great reminders.  You should check it out.  In the spirit of these reminders, here are a few blessings in my life…

Last week we received a response from Dr. Hayflick, the NBIA specialist.  She has suggested giving Alex high doses of Vitamin B5 a try.  Vitamin B5 is also known as Pantothenate or Pantothenic Acid.  Sound familiar?  Alex’s diagnosis is Pantothenate Kinase Associated Neurodegeneration (PKAN).  The thought is that giving extremely high doses could give some PKAN kids a boost of what they lack.  We’ve talked about this in the past, but never done it.  In all likelihood, Alex has no pantothenate in her body, so her body won’t know what to do with any we can give her.  There is a small chance that it could help a little.  It’s worth a try, so we started this supplement on Sunday.  Just to be clear… this is not a huge deal.  There is no expectation or reason to believe that it will significantly change anything.  The hope is that it could provide a bit of symptom relief for her and since it is water soluble there is little to no risk of negative side effects.  Now, here’s the biggest blessing…

In Dr. LePichon’s original email to Dr. Hayflick, he explained that Drew and I had chosen not to take the risk of Deep Brain Stimulation or to participate in the drug trial in California because of the stress it would be on Alex.  Dr. Hayflick’s response was very encouraging to me.  She said that she completely agrees with our decisions… that limiting Alex’s travels will help control her stress levels and ultimate comfort, as well as avoiding any type of surgery.  That feels good, to have the support of such a specialist… to have some additional confirmation that we are doing the best for Alex. 

Other blessings…

  • a long weekend with Drew at home
  • Alex hasn’t shown any new symptoms in the last week.  Nothing is better, but nothing is worse.  That is a blessing and we can only hope that we are nearing the end of this 2 month decline and entering a period of plateau with no new symptoms 
  • now that we have had some time to adjust to Alex’s most recent physical changes, she doesn’t need to be held quite as much.  I’m still holding her a lot, but can also put her down in the floor to wiggle and play
  • Drew put our sectional back together and the living room feels more comfortable again.  The temporary rearranging was worth a try, but this set up feels much more functional and cozy
  • next Friday we will go to KC for a visit with Dr. LePichon.  This will be the last visit until the spring, when the high risk from cold & flu season has passed.  We are grateful for these visits with our very capable neurologist and the ability to communicate via email and telephone when it is unsafe to have Alex in the hospital & clinic

Yes, we are blessed.  Counting these blessing, large & small, does much to feed my contentedness and happiness. 

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