Tuesday, March 4, 2014

Year In Review-Part 3

This is part of a series catching up on 2013!  See the other posts here:  Part 1 and Part 2

SEPTEMBER
Cole doesn't start school on time.  He is just too unstable.  We see a Integrated Medicine doctor.  An MD, that also practices natural medicine.  She has a theory about my adrenal insufficiency.  Cole finally makes it to school.
 We LOVE his team!  We totally know what it is like to not have a support system at school and consider ourselves so incredibly lucky to have the amazing people here.  He really struggles and has to start wearing a bib in September that has to be changed constantly because of the drool.
 I even send him to school in his wheelchair when he can not hold up his head or walk.
 Has not been eating at all for a few months and has been solely tube fed.  Sometimes it is nice to have breakfast where super hero gear is mandatory.
Made a custom letterpress invitation for Gourmet Club.  Find out I need double knee replacements.  Start 6 weeks of collagen injections under my kneecaps.  I am a huge fan of Lidoderm patches, even if you run out of regular Co Flex and need the dinosaurs to keep them on ;)
 We continue to explore treatments for Cole.  He is really struggling.
 Government Shutdown starts.  Total Major Seizure Count: 273

OCTOBER
I am asked to give a class on Style for a group of young women.
 I go to New York for a conference.  We get adorable family pictures taken by my talented friend.  Celebrate Slugger's birthday with a trip to Cox Farms.
 The light goes out of Cole's eyes and he is zoned out for over a week.
 I host Eat, Drink and Be Scary!  Had so much fun with my theme this year.  Glowing green ice cubes, dry ice, all sorts of fun and fantastic food.
 Cole pulls out his g-tube.  That makes my heart race more than any seizure nowadays.  Cole is on antibiotics.  School is like a petri dish.  I break my foot, nothing they can do about it.  It's Diffendoofer Day at school.  I take Cole to the zoo.  Decide to take Cole off of all benzodiazepines.  He is a full blown drug addict.  His body constantly searches for the next "hit" and ends up having more seizures because of it.  Long story short, rehab at home is not fun.  Realization that the hospital just can not help us any more is difficult.  I start seeing a doctor about losing my hearing and Tinnitus.  I will probably write more about that later, maybe...don't hold your breath :)  We are Super Heroes for Halloween.
 Meet Captain Canine, Super Cole, Tiger Mom and Dad...who doesn't need a secret identity.  Total Major Seizure Count: 200

NOVEMBER
Fall weather is perfect.  The leaves are amazing.  Cole gets sick again.  More antibiotics.  We start dealing with thrush as a side effect of not eating and drinking by mouth.  We go to the Newseum.  Fall baking is in full force.  Cole starts having cycles of "good days" and "bad days".  6-9 days that are almost seizure free, then 3-4 bad days where he can have 60+ major tonic clonic seizures in one day.
 We are just grateful.  Even though the bad days are really bad.  The good days are good and he can recover.  Before, he was having bad days, every day and was regressing because his brain and body never had a break.  Cole stops having nocturnal seizures every night.  Only when he is in "cycle".  After 7 months of fighting with Medicaid, we get 16 hours a day of nursing.  Totally changes our lives, since we can now have night nurses.  We are getting to see glimpses of our little boy coming back.
   Total Major Seizure Count: 257

DECEMBER
We have ice storms and more snow than we know what to do with.  DC seems to panic and shut down every single time there is a storm.  I get cortisone shots in both knees so I can play tourist with Grandma and Grandpa when they come for an early Christmas.  We eat a lot.
 Don't get to go home for Thanksgiving, Christmas, New Years, birthdays, baptisms or Grandma and Grandpa's LDS mission farewell.  However, Christmas Day is fantastic for Cole and it is the first holiday ever in 6 years that he has enjoyed and was able to participate in traditions.  Best day EVER!
 Mom gets hearing aids for Christmas.  They are actually quite small and blend easily.  You can see here where I have a top knot, you can still hardly tell they are there.
 Again, I will probably, maybe write about the emotions connected to this.  Total Major Seizure Count: 204

All in all, we had an absolute whirlwind year.  This is the major Reader's Digest compact version, with a lot of holes.  Sometimes it is amazing to take a step back and realize how much can change in twelve months.  All that matters at the end of the day is we are trying our best.  I still get to snuggle this little guy who is not so little any more!  He is a true warrior and makes me want to keep fighting, even when it seems like I don't have the strength.



2 comments:

  1. Niki, it was so good to see some updates :)!
    YOU ARE AMAZING!!!
    I can't imagine dealing with the severity of Cole's seizures and your own health issues on top of everything else.
    And yet it looks like you are still able to have a little fun :)
    I hope that things turn around for you guys soon. Sending prayers and love your way.

    ReplyDelete
  2. Always thinking about you and praying for you every day. Hope we get to see you soon! Love, Ashley

    ReplyDelete

 
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