Friday, April 10, 2015

Revival of the blog ;)

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   Well I pretty much typed a big long post and then promptly deleted it.  Hate it when that happens!  So sorry, I guess this is going to really be a short version of what I want to say.

    Elliott had his first of many VEPTR rod expansion surgeries and did amazing!! We got to go home the same day.   He went home on oxycodone, he did start complaining that his back hurt and not wanting to move about a half hour before I could give him his next dose.  Some friends of ours had given us some Oregano oil and I figured it was worth trying until I could give him more meds.  A half hour later I walked in to give him the meds and he had the biggest smile on his face, "Mom! My back doesn't hurt anymore!" He got up and played after that and anytime he would complain of pain I would offer him "Medicine" or "Oil.  Guess what? He chose the oil over the heavy duty pain meds every time!! Yup, I was pretty impressed.
    He has had some struggles with pressure ulcers which we are watching closely.  We ordered him a new bed and pressure relief mattress which I am really hoping will prevent that skin break down.  
   I'm most excited about the fact that I found a geneticist that specializes in Ehlers Danlos.  Elliott got an appointment with him in June (MUCH quicker than the usual 2 year wait list!) and I am really looking forward to getting some insight into possibly issues we may need to address and hopefully some preventative measures we can take to give Elliott the best chance possible!

   Lance is funny and happy.  We hear little giggles more and more from him which is the best sound in the world.  He has been having some really scary episodes where he basically just goes unconscious.  We've had to start treating him with seizure meds and have already had to increase the dosing because they have not been well controlled.   We knew he was a high risk for seizures and had initially come home with a seizure diagnosis, but we have not had to treat for them and hadn't seen any activity for 15 months. 
  We've recently decided to "reject their reality and substitute our own" (to borrow a line from MythBusters ;) ) regarding the permanency of cerebral palsy.  The general consensus of professionals is that CP is not reversible or curable.  I believe this is true - HOWEVER I also believe that God created the human body to heal from injury.  I believe that while people used to insist that the world was flat that it is, in reality, ROUND.  I believe that while people scoffed at the idea of man being able to fly, the fact is man is capable of "flying the blue skies." So, at the end of the day I am choosing to believe that the limitations and "expectations" placed on children with cerebral palsy are not set in stone and we will fight to find ways to help Lance reach his utmost potential.  WHO'S WITH ME?!

FINALLY .... there is a beautiful little girl in Elliott and Lance's country that desperately needs a family. She has some major physical needs, but all of them can and should be treated.  It will take a special family to provide this little soul with the medical care and attention she will need.  No two ways about it - ADOPTION IS HARD.  I am here to say that while it is definitely hard it is ABSOLUTELY BEAUTIFUL AND WORTH IT!! Please take 30 seconds to pray for Mary Ellen and maybe even share her link on facebook or with a friend.  MARY ELLEN

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