Only 19 more days to go!

Can you believe we leave for San Diego in less than 3 weeks!?!  Wow! :)

I'm sorry it's been so long since I updated.  Haven't been feeling great and am dealing with really bad hay fever on top of everything else (and the funny thing is, I'm rarely outside!).  May 16th I had a nasojejunal feeding tube inserted.  The jejunum is part of the small intestine, and the small intestine alone is about 20 feet long!  Talk about amazing! :)  My GI dr. had difficulty placing the tube past my stomach, and it took 3 tries + forceps.  I also had a rough time in the PACU (post-anesthesia care unit)---my temperature dropped to 94 degrees, and I experienced heart/lung issues which required IV heart medication and a breathing treatment.  With mito, nothing is simple..

On top of all that, the bottom of the feeding tube got kinked that night, and I couldn't even start feeds.  I had to go back into the hospital two days later and get that fixed.  It's now working great! :)  It's actually fun to set up the feeding pump every day and use a syringe to flush the tube before/after feeds.  Each night, I receive up to about 1000 extra calories (my GI dr. gave me a diagnosis of Protein Calorie Malnutrition).

I'm slowly getting used to the tube down my throat but am still experiencing painful "charlie horses" in my tongue which aren't fun at all.  But I only need to have this NJ tube for 5 more weeks!  Counting down the days! ;)

Thank you so much, Auntie Karen and Kelsey, for putting together this beautiful "scrapbook" full of cards and notes!  What a treasure this will be throughout the years!  I am so blessed to have you in my life. :)  And thank you to everyone for sending words of encouragement through this book!  It means a lot to me.  I'm thankful to the Lord for all the support He's placed around me!

New and current problems

Thank you all for visiting my blog!  That really encourages me!  I can tell from the increasing page views that some of you have been waiting for another post. ;)

I'm sorry my blog posts have lately been few and far between....I've been busy trying to manage all these ongoing symptoms which are getting significantly worse.  To the stranger's eye, I look completely normal.  And yet, this is just a small part of what's going on:

My left eye is getting more and more paralyzed.  It hasn't been fun losing so much range of motion, and it's weird that I can't look to the left unless I move my whole head.  But I'm so thankful that my right eye is unaffected at the moment and can move very easily!

I'm now dealing with ongoing hip pain, and physical therapy thinks this is a hip impingement.  The problems never end.. :/  This is probably because of EDS and all the muscle weakness that I'm experiencing as well.

The nerve pain in my feet has been increasing in severity---my pain medicine dr. is concerned that I may have a nerve injury component worsened by not getting enough nutrition.

Next Friday is the day my GI dr. will be placing an NJ feeding tube through my nose, past my stomach, and all the way into the middle of the small intestine.  I'm glad this is just around the corner because I'm still steadily losing more weight.  I'm nearing the weight that I was at when just 10 years old....that's how bad this is becoming!

I have no clue what my prognosis will be in 1, 5, or 10 years.  Mitochondrial disease is so unpredictable.  But this I know: my future is fully in God's hands, and I trust Him completely! :)

*JUST 37 MORE DAYS TILL WE LEAVE FOR SAN DIEGO!*