There are several different options for surgery as Kenadee gets older. Right now, her urinary stuff has been rerouted to bypass peeing normally. Mito disease makes it hard for Kenadee's muscles, bladder, kidneys to function properly.
Dr. Cannon, her urologist, talked about taking her damaged kidney out (one of her kidneys is "better" than the other & with all her UTIs...her kidneys have been scarred). This would allow all the current "rerouting" to reroute in another way. She would be using one hole to pee out of, instead of 2, and it would go into a bag instead of a diaper. He also talked about doing some easier procedures helping her bladder stay better on the inside. Right now, one of the holes she uses comes directly from her bladder and there is tissue that is always out instead of in :(...it's kinda like a little piece of her bladder is on the outside of her body and needs to be put back.
Kenadee's ability to come out of anesthesia gets worse and worse as she gets older. Her lung spec explained it to us as she was born with a low battery and as she gets older the battery gets lower and lower :(. All of her doctors have to consult with each other before doing anything really :).
Long story short, we are holding off on any surgeries right now...making sure that a surgery would result in an improvement in Kenadee's quality of life. It's a big chance to take with mito babies and their struggles with anesthesia.
Saturday, January 28, 2012
Friday, January 27, 2012
Non-marking soles..
So, I'm sure we've all been to a shoe store & checked out the kids shoes. Have you ever noticed the ones that say "non-marking soles?" So, I'm slso sure they serve a good purpose and help keep little black marks off the floor.
Today, I was putting Kenadee's shoes on and found myself staring at the unmarked soles of her shoes. It may sound funny, but to me, I'd give anything to have little Kenadee marks all over every piece of floor possible.
When I started this blog, I told myself it wasn't going to be a plethora of sad entries. I wanted it to be a way for me to get my thoughts out without having to actually "say" them.
So, as I sit at Arkansas Children's Hospital waiting to see one of Kenadee's many specialists...I meet a new mom whose been here for a couple weeks. It's the same ole story, perfect pregnancy, few months old and something was wrong, and now here I sit waiting for the answers.
I feel like I'm sitting next to me about a year ago. ...and although I may never worry about marks from Kenadee's shoes on our floor...I can sit next to someone whose hurting and feel good that I can TOTALLY relate to her story.
A story that so often goes unheard and unnoticed. A story that needs to mark people's soles.
Today, I was putting Kenadee's shoes on and found myself staring at the unmarked soles of her shoes. It may sound funny, but to me, I'd give anything to have little Kenadee marks all over every piece of floor possible.
When I started this blog, I told myself it wasn't going to be a plethora of sad entries. I wanted it to be a way for me to get my thoughts out without having to actually "say" them.
So, as I sit at Arkansas Children's Hospital waiting to see one of Kenadee's many specialists...I meet a new mom whose been here for a couple weeks. It's the same ole story, perfect pregnancy, few months old and something was wrong, and now here I sit waiting for the answers.
I feel like I'm sitting next to me about a year ago. ...and although I may never worry about marks from Kenadee's shoes on our floor...I can sit next to someone whose hurting and feel good that I can TOTALLY relate to her story.
A story that so often goes unheard and unnoticed. A story that needs to mark people's soles.
Wednesday, January 25, 2012
Friday, January 13, 2012
genetic testing..
We started genetic testing before Christmas on me...it's really expensive so we started with one of us. I wonder why there are some people who are bank tellers, firemen..and then GENETICISTS?! It completely blows my mind what a geneticist's brain can comprehend well enough to explain to people like me ;). After processing the info I learned today..this is how I would explain it...
Kenadee has two broken genes...both broken ones could have came from me, one from Dennis and another sporadically, or both from Dennis. Today, we found out that neither bad gene came from me which means we now test Dennis to see if they came from him. If both came from him, then it is back to the drawing boards to understand why Kenadee is the way she is. Children with Mitochondrial Disease don't have the same broken genes as K, which could mean that she started a new trend or there's more to the puzzle. Regardless, I feel one step closer to understanding..... sort-of.
Hopefully, we'll know the answers soon..maybe to give us a sense of closure, to help Kenadee's doctors better understand and work more towards a cure, and help us know the chances of the disease attacking other kids if we chose to have more.
Praying daily for a cure....XOXO
Kenadee has two broken genes...both broken ones could have came from me, one from Dennis and another sporadically, or both from Dennis. Today, we found out that neither bad gene came from me which means we now test Dennis to see if they came from him. If both came from him, then it is back to the drawing boards to understand why Kenadee is the way she is. Children with Mitochondrial Disease don't have the same broken genes as K, which could mean that she started a new trend or there's more to the puzzle. Regardless, I feel one step closer to understanding..... sort-of.
Hopefully, we'll know the answers soon..maybe to give us a sense of closure, to help Kenadee's doctors better understand and work more towards a cure, and help us know the chances of the disease attacking other kids if we chose to have more.
Praying daily for a cure....XOXO
Thursday, January 12, 2012
My very first post on my very first blog....
Having a blog & keeping up with it was one of my like 10 NY resolutions so here I go...as I drink my protein drink to help me with another resolution. I plan on getting better once I learn how to do all the nifty things like...add a playlist. I LOVE music and this cannot be complete without some tunes ;). Wow, I really do type exactly like I talk...incomplete sentences...this blog should be fun!
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