THIS IS MY STORY . . .

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May 2, 2013
  • Alpers Disease
  • Barth Syndrome/LIC (Lethal Infantile Cardiomyopathy)
  • Beta-Oxidation Defects
  • Carnitine-Acyl-Carnitine Deficiency
  • Carnitine Deficiency
  • Creatine Deficiency Syndrome
  • Co-Enzyme Q10 Deficiency
  • Complex I Deficiency
  • Complex II Deficiency
  • Complex III Deficiency
  • Complex IV Deficiency/COX Deficiency
  • Complex V Deficiency
  • CPEO
  • CPT I Deficiency
  • CPT II Deficiency
  • KSS
  • Lactic Acidosis
  • LCAD
  • LCHAD
  • Leigh Disease or Leigh Syndrome
  • Luft Disease
  • MAD/Glutaric Aciduria Type II
  • MCAD
  • MELAS
  • MERRF
  • MIRAS
  • Mitochondrial Cytopathy
  • Mitochondrial DNA Depletion
  • Mitochondrial Encephalopathy
  • Mitochondrial Myopathy
  • MNGIE
  • NARP
  • Pearson Syndrome
  • Pyruvate Carboxylase Deficiency
  • Pyruvate Dehydrogenase Deficiency
  • POLG Mutations
  • Respiratory Chain
  • SCAD
  • SCHAD
  • VLCAD

Whew!  All THESE names are the many types of Mitochondrial Disease (and no, I didn’t memorize all this… ;).  This, my friends, is what I’m going up against. :  I have a long road ahead of me.  I may have one of these or several (as some go together)…  But nothing is impossible with God! 🙂

Still waiting on blood work…  The doctors are first checking my mtDNA for deletions/duplications..  Then, if that’s normal, they will keep going deeper in..

Next week, I have an appointment every single day except Friday…  It’s gonna be busy!!  I see my neurologist on the 8th, and we’ll go over the Cincinnati trip and what to do next.

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Now, on to more light-hearted stuff.. 😉  Our visit to the Creation Museum (by Answers in Genesis) on our last full day in Ohio was an amazing experience!  If you’re ever in Kentucky, I highly recommend visiting it because it won’t disappoint!  The Creation Museum not only explores the 6 days of Creation.  We learned about fossils, Noah’s ark, evolution, Jesus, the ice age, and a whole lot more!  Plus, their Dragons bookstore was soooo much fun!  I bought this super cute turtle necklace that has a hematite stone on it! 🙂
Enjoy the following pictures!!  Sorry that a lot of them are out of order!

beautiful grand canyon!

the tree of life

the crafty serpent

God clothes Adam and Eve after they sin.

Andddd….because I have pain and lots of other conditions, it’s only appropriate that I take a picture of this. 😉

Adam, Eve, Cain, and Abel 🙂

their house!

interesting!

Fact: Answers in Genesis is actually in the process of building a full-scale Ark!!!

This exhibit actually displayed some of the first Bibles to be printed!  But no cameras were allowed in it, so I had to take a picture of this. 😉

love this!

getting ready to eat lunch in Noah’s cafe! 🙂

the bookstore!

this mural was built in the bookstore!

It wasn’t a very sunny day, and it was too cold to walk around in the gardens.  But doncha think the landscape is beautiful? 🙂

 

Post written byKerissa

This post has 6 comments

  • Hey there! That creation museum is really cool! Also that's great that your finding more information and getting closely to a hopeful firm diagnosis, so then you can find a cure! I read a story the other day about a child was was diagnosed with Mitochondrial Disease and his family started a fundraiser to find a cure! And back to your point, nothing is impossible with God, lots of people are with you looking. Hope on the 8th the doctor points in a great direction!

  • Hey John! I was thinking about you the other day. 🙂 Are you all done with school? How is PT going?

    Yeah, I'm very thankful for more answers. 🙂 Not feeling too good lately. 🙁 I'm excited to see my neurologist tomorrow! If she does refer me to some other dr. or something, I'm hoping it will be soon!

    Guess what? My PCP prescribed me a wheelchair! Haha, I never thought I'd want one, but I'm thinking it'd be really cool to have a athletic/sports wheelchair! 😀 I don't want one that "old" people use.. 😉

  • !!!!!!! I'm not yet! =/, I wish but I still have till the end of this year hah. But I haven't been to PT in a while, I really think its my hormone stuff that causing problems(trying to see an endocrinologist), but I'm doing some pt at home still!

    Oh dang =/, sorry to hear. I hope the neurologist had some good news today!(was there?!?!) I'll be praying for ya. Glad we can hope hope hope hope hope hope hope!

    Hahaha that's awesome!!!! You should totally decorate it/modify it/make it awesome. That's exciting though! I almost applied for a clinic who trains professional wheelchair athletes! maybe your calling is that?! =P But that would be great if you could get around easier and explore the outdoors.

    Actually another story to give ya hope. A few army guys were injured and they now compete in competitive outdoor scooter(a motorized big wheel chair) racing. They seem really happy, and they can go on adventures and climb hills with the vehicle!

  • Haha, I'm sure this school year will be done before you know it! Hopefully! 🙂 My dad sees an endocrinologist for his diabetes. I hope you'll be able to see one soon!

    Thank you for praying! Haha, not sure if the neurologist had good news, but she did form a good plan! 🙂 I'm working on a new blog post to update all of you!

    This company's coming to our house tomorrow afternoon to do some wheelchair measuring and stuff. lol My bro said maybe I'll be the next olympic wheelchair racer. ha! 😉 But I'm still hoping I won't have to use one for long.. Thanks for sharing that story of the army guys! It's so wonderful how we can always adapt to new situations! 🙂

  • Haha me too! oh snap, if mine doesn't accept me or something i'll have to go to beaverton hah

    Great post, I guess that means you might be going on another adventure?! heh, I'm glad both facilities are closer by though. Also it's good to hear they have many different things still yet to test. I'll keep praying!

    Haha I think your brother is right! But I hope you won't have to be in one for long either.

  • So my neurologist sent in the referral to Seattle Children's mito program this morning, but we found out that they're booked till October….!!! 🙁 Plus, since I'm turning 21 soon, they might not be willing to see me anyways.. : *sigh* I've been looking all over the place for mitochondrial programs, and pretty much all are pediatric (since this condition is usually a pediatric disorder)! So either God will make a way for them to be willing to see me, or I might have to go to California!

    Thank you SO much for praying! I definitely need it. 🙂

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