Failure to Thrive

Today we, or should I say Areli, had her G.I. appointment with Dr. M.

We went because Areli hasn't been gaining weight, despite eating like a grown man. Literally she eats more than I do. She eats 3 full meals a day, more than what I put on my plate and then she eats a snack every 45-60  min. It is exhausting to feed this child. It is also very concerning that she eats so much and is not gaining weight. Dr. M went through her growth chart with me and Areli has completely plateaued. Instead of the graduated growth curve that children should follow, Areli has stayed level at the same weight (give or take a few oz. gained and lost) for the past 5-6 months. Areli has now been labeled, Failure To Thrive. That phrase kind of sucks huh? Soo, now we have the daunting task to up her calories even more. I say daunting because I don't know how we can pack even MORE calories into this little body than we already do! But thanks to a dietician we met with we have some creative ways to pack on the calories and protein. Areli also had blood drawn to test her thyroid to see if maybe that could be the culprit of no weight gain. We will also test her blood sugars to see if that could be the problem. Wish us luck that we get some weight on this baby and that we find out why she is "Failing to thrive" because if she doesn't pack on the pounds, we may be heading down the path of a g-tube.

On a better note, despite no weight gain, Areli's head circumference and length are both growing right on track. Also, this is the best her little liver has ever been!! I am not sure if it is due to the CoQ10 or what, but for the first time since she has been alive SOME of her liver labs are IN THE NORMAL RANGE!! And most of the others are at an all time low. Her physical exam usually presents with a hard and slightly enlarged liver (by 1-2 cm), but today for the first time ever her liver was NORMAL, soft and the correct size!! Let's go ahead a give Areli a "Whoot Whoot"!!!!

Hopefully we get answers soon! (I feel like I've said that a time or two before, always waiting for answers for something with mito). Until next time friends!- I must go feed the beast, she's hungry AGAIN!

Love,

Mama Linnea

Well, Hello CoQ10!

So, today is a big day for Areli. Today she had her first dose of her mito cocktail. To those of you who are experienced in the mito world, this is a common, everyday ritual. For those of you who don't know, a mito cocktail is composed of different vitamins and supplements used to 'treat' mitochondrial disease. If you recall there is no cure for mito, so we make efforts to try to slow the progression of the disease and increase the quality of life. Many patients can take upwards of 50 pills a day to treat their mito. Every cocktail is specifically custom to the paitent and their specific symptoms/needs. To start, Areli is only taking one supplement, Co Enzyme Q10 or CoQ10.

This little bottle, that holds the potential to slow the progression of Areli's liver disease, to improve her quality of life, to give her little body more energy so her organ systems function more productively, is EXPENSIVE!- to say the least. So a HUGE thank you to our local Miracles for Mito Foundation, who made this available to us. There's no way to thank someone who is improving your child's health. 

Be sure to check out the founders of Miracles for Mito, Maria at Moments with Jacob and Heather at Samantha's Mom. They are amazing woman and mother's who have done incredible things for the mito community and patients.