Hey everyone! Sorry, I haven’t updated in a little bit. We had a little setback again. We were supposed to go home as you know couple weeks ago, Krew had to get surgery. He went in for a G tube, which is a feeding tube through his stomach. He’s had the nose tube for quite some time now & the longer he had it could’ve potentially damaged the throat by putting it back in so often since he kept pulling it out. But once we go home, it’ll be less invasive & easier for feeding for me & Krew Krew.
We got one of the pending test results back that we’ve been waiting for since January. The test to see if he has any abnormalities. He does. He has 3% which is very low rate, of a mitochondria disorder. There’s many different ones & now there will be another test we’re doing.
Krew having a mitochondria disorder means, his mitochondria in his body can’t efficiently turn sugar and oxygen into energy, so the cells don’t work correctly. With the cells not working correctly, it can affect different parts of the body: the brain, kidneys, muscles, heart, eyes, and ears. It can cause fatigue, muscle weakness, metabolic strokes, seizures, heart problems, developmental delays, or cognitive disabilities, hearing loss, vision loss, growth, liver, gastrointestinal, or kidney function, and more. These symptoms can present at any age from infancy up until late adulthood.
Since getting sick last year, it was just another reaction of this disorder starting to come to the surface. Krew has all of those symptoms except for the heart & kidney problems. It’s going to be a long road ahead. Further test will be done, but there is no cure for this diagnosis. 🙁
My family & I have been in touch with so many doctors on the mainland still hoping there will be something else we can do. Even though we’ve reached out they all say there is no cure except for physical therapy & vitamin supplements daily. I strongly believe this can be reversed somehow someway & my little man will come out stronger if we continue our research. I love you krew krew so so so much! Mama is trying her best to keep this fight going to give you the best help possible. This is such a crazy journey & you are such a little fighter! Thank you to all of you guys for reaching out & giving us support & being here with any extra knowledge or advice.
PS… your brother made a birthday wish last week, that his little brother wouldn’t be sick anymore 🙁
love, mama chlo
