Wednesday, September 29, 2010
Last week I kept up my Facebook posting different snippets about Mitochondrial Disorders. Nothing I could have put together could have been more beautiful than the awesome and touching video put together by Mito Mom Mandy Poche, who organized our first Baton Rouge area "Mito Meet-Up". 8 families invited, 1 ended up in the hospital, 1 had a stomach virus, and we ended up with 4 families in attendance.
The Bacot family came - our friends who also have a diagnosis of Leigh's Disease. Juliana made eight years old - proving that patients with this diagnosis can outlive their original prognosis by years by the grace of God.
The Poche family's youngest daughter was diagnosed very young with a mitochondrial disorder, but they suspect the middle child might also be affected, as her development was very delayed and shows some additional possible signs of a mito disorder.
Lastly, we met a sweet girl Morgan, who is in school at LSU and was diagnosed just recently with a mito disorder. We remain hopeful she will have many long years to overcome her disease. I think it was quite a relief for the family to know they are not alone, and that there is hope to fight this disease, despite the prognosis we are all given.
Mandy put together a touching awareness video, featuring each of our families. I'm so grateful she did this, and we look forward to another one next year!! You can see it here: http://www.youtube.com/watch?v=ry_eUeivyPE
Thanks for checking in on us... MEDICAID has paid it's first bills for Braden (select medicine co-pays and therapy co-pays), so we are super-excited about getting a little financial relief!! It's not totally covered, but every little bit helps! Currently, we are interviewing PCA workers to watch Braden in the evenings so we can take care of bills and make dinner, clean house, etc. - it's very exciting to know that soon we will get some help to maybe go on a date night on a regular basis!!
Thanks for checking in on us,
Braden, Kodi & Brad
Saturday, September 04, 2010
So we took a time-out from the blogging for awhile, seems we got a little busy around here! A few groups of friends of ours have recently bought homes, and shared with us the awesome rates they were able to secure. As we look to expand our family in the coming years, we expected to be looking to make a move in the next few years. Not to mention, we are FINALLY going to get set up with some home nursing through Medicaid on the NOW waiver, we really need to live closer to LSU. If something happens to Braden, we don't want to be 30 - 40 minutes away (or over an hour depending on the time of day), we need to be much closer so that we are comfortable setting up the home nursing. So, it's prompted us to put our house on the market, and start looking for a home to grow into, that's much closer to LSU.
So we've been busy de-cluttering and spring cleaning pretty deep... while we park a mobile "mini" in the driveway. The quotes because it sits higher than our roof line. Last time we got a mini, we still had to get an additional storage unit on top of it, and this time we were determined to move just once. It's massive, but for now, allowed us to de-clutter and move things into the unit while still keeping an aisle down the middle. It will have to be re-packed when we are really ready to make the move, because they get that sucker at a 45 degree angle on and off the truck! So we will have to be sure it's all secure and things don't get crushed or broken in the move. It definitely looks more industrial than home storage, but it should do the trick.
Braden has been doing great since right before our trip. He's very particular these days about not liking his shirt being taken on or off over his head, but for the most part he's been a very sweet kiddo! He definitely likes to snuggle in his chair that the International Wish Foundation got him - it's been such a blessing to be able to snuggle with him as he gets so BIG!
He grows bigger all the time, it seems, and he's wearing a size 6. A 6 people - can you believe it? He is fine in short season, but I'm sure as we move into pants season, we will see just how long those pants will be on him... he's very long in the torso, and those pants will likely be too long for his little legs:-) Built just like his daddy - wide shoulders, long torso.
Today daddy is traveling, playing chaperone to the Student Government annual "bus trip" to an away game. Today LSU will play North Carolina in Atlanta at the Georgia Dome for our season opener. Braden and I will cuddle up here in Baton Rouge at home to watch for daddy on TV. Geaux Tigers!
Mommy is busy proof-reading the fundraiser cookbook - so we hope to have it available for purchase soon! It's a very busy school year with daddy moving up into the interim associate director's position, and mommy launching new products for the sales team and a new era in media sales.
We ask you to keep praying for Braden's Aunt Shala, Kodi's sister. She has been diagnosed with cancer #4, and is battling a tumor on her chest wall. Chemo has begun, a radiation implant placed (because former rounds of radiation lead to her losing a kidney last year), and an appointment with a specialist in Denver is booked. We know that she too will win this battle, as Braden continues to fight his battles too... he has to have someone to look up to! Thank you for your prayers and checking in on us, we hope to do a better job keeping the blog updated, we are just so grateful to have this period of having a healthy Braden!! Thank you, Jesus!
Love from the south,
Kodi, Brad & Braden