Health knowledge made personal

Kodi Wilson

Blog: http://baby-braden.blogspot.com/
Well, we are no celebrities, just a family going through life and it's ups and downs with a special needs child. Our son is diagnosed with Leigh's Disease, a terminal degenerative disorder which is categorized as a mitochondrial disorder... as it eats away at muscle tissue and brain matter. He... Full Bio
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Updates and transitions by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So as we celebrate Mardi Gras this weekend, it's been a busy week for us to catch you up on. Since Braden is turning 3 soon, we transition out of our Early Steps program s ... Read on »
Happy Valentine's Day 2009! by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health I thought I would take this opportunity to share with you all the things that Braden is now doing, since he has come home on the ventilator and on the vitamin cocktail. ... Read on »
Heart Day is on it's way by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Our little friend JazMyn just couldn't wait to give Braden his valentine's gift - the one she picked out just for him... so we already exchanged our little tokens of lo ... Read on »
New Year, New Us? by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health We have been blessed to have been recipients of a visit from Brad's aunt and uncle Jeannie and Jerry from Pensacola. They were in New Orleans seeing family and a show, an ... Read on »
Back with a sleigh full of presents from KS by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Well, spending such wonderful quality time with the family was so great this trip. While Braden wasn't up for much moving around, we still managed to see many ... Read on »
Made it to KS... long trip but we are OK by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Well, a normally 12 - 14 hour trip to KS turned into a 16-hour trip. We "thought" we had planned for everything, but when you are turning your vehicle into a moving PI ... Read on »
Made it to KS... long trip but we are OK by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Well, a normally 12 - 14 hour trip to KS turned into a 16-hour trip. We "thought" we had planned for everything, but when you are turning your vehicle into a moving ... Read on »
First big SNEAUX in over 50 years by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health It has snowed here in Baton Rouge on Thursday. I joked with some friends that Hell had frozen over, as it snowed in New Orleans too:-) It was the first snow lik ... Read on »
Lessons from Paxton (and Jesus) about life and death by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health I thought I would share with you something that Braden's Aunt Shala shared with me a few weeks ago. She was faced with how to tell her five-year-old about Braden's dia ... Read on »
95th Percentile!!!! by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So we have a few updates for you... some of you know that Braden was born at 21 1/2 inches long, putting him over the 90th percentile at birth. When he was 6 months ... Read on »
Tiny Dancer by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Braden seems to be finding more energy all the time to try new things. Some of them really crack us up... we feel kind of bad for laughing at our own kid sometimes ... Read on »
Home Routine getting into swing by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So we didn't want to "jinx" our return to home, so sorry we've waited to post. Braden has not made the easiest transition. His past ability to adapt quickly seems to ... Read on »
"He's My Son" - home this weekend? by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health It looks like we might get to bring Braden home this weekend if all continues to go well with the vent. Braden seems well by all accounts, but he has lots of lactic ac ... Read on »
Hospital Halloween by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So we had another holiday in the hospital, let's hope this will be our last for awhile. We took our little "lord" for a battery test on our new vent, the LTV 950 ... Read on »
The Diagnosis - Leigh's Disease by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health This might be the hardest post we've ever made. We knew this day might come where we may finally get an answer, but not all answers are the ones you want to hear. Brade ... Read on »
Braden's Song and more tests by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So we inch closer to a diagnosis, they do more tests and we had an MRS today (a spectroscopy MRI that looks closer at metabolic activity in the brain). And even should w ... Read on »
Ventilator malfunction and bad settings put us back at OLOL by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Friends and Family - I'm not sure where to begin, as we only tasted four sweet days of freedom, and they weren't very "free" and they have come at a price. You know we a ... Read on »
Home Sweet Home at Last - 61 days at OLOL by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health Finally we got to bring Braden home Saturday, for mommy's birthday! We spent 15 days in August with an 11 day hiatus at the end of August before going back for another ... Read on »
Muscle Biopsy Back, More Procedures by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So we begin Week 5 straight here at OLOL, but we've been here now for 7 of the past 9 weeks. (Remember we got those two weeks "off", when we got our sleep study and bra ... Read on »
His New Wheels and Another Successful Round of Surgeries by Kodi Wilson Facebook Posted in: Blog Posts in Children's Health So Braden seems to really be enjoying his new set of wheels, and we sure hope so, since they cost more than the cost of mommy and daddy's first cars combined! :-) ... Read on »
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