An unexpected Christmas Gift

This year has been busy for us - if the lack of blog posts didn't make that evident enough. We've been very busy with our jobs, keeping up with Braden's newest ailments and getting more involved at our church. Some may know our church faced some controversy and challenges as the pastor of 20 years stepped down unexpectedly. Speculation can be hard enough on a congregation, as if "change" itself wasn't enough of a challenge. For us a family, the change has been positive, as we fully support the incoming pastor and his wife - but we have been blessed to also call them friends. Pastor Mike Haman is a humble, funny, down-to-earth, sincere man who wears his love, empathy and compassion for others on his sleeve - making it evident to anyone who has ever met him how much he embodies the love of Christ. His wife, Pastor Rachel is an incredible woman of similar character who puts you at ease the moment you meet her, and the Christian spirit shines bright through her empathy and compassion for others - making it hard not to be swept up in her beautiful smile and personality. They have 3 children. The youngest, Trevor is 5 yrs old. Trevor and his family have given us the biggest Christmas blessing we could have wished for - and until I post this, they will have no idea just how much it's meant to us. Brad does security for the church, so he has gotten to know several of our pastors well, and they in return have gotten to know us. It's been an amazing feeling to be part of such a big church, that does so much for the community - for us to feel like we have personal relationships with our pastoral staff, and call them friends. So this fall, we passed out some of Braden's "Bee-lieve" cups and last year's purple & gold magnets with Braden's picture on them to some of the staff to share with their children. Soon after that, Trevor (Mike & Rachel's youngest) said he likes purple & gold now, because Braden likes purple and gold. This was the gift we never thought we would be given... another child "looking up to" Braden. Most children look at Braden as a big baby. I can't even bear to tell the story in person without fear of getting overly emotional about it. Knowing that Trevor & his siblings are not only praying for our young soul, but that he actually looks up to him, is something as Braden's parents I don't think we ever anticipated getting to experience. It warms my heart more than I can express, and I am so thankful for the opportunity to have our church family embrace Braden like he belongs to them too. We are so grateful to feel the love and support from people who CHOOSE to love him. We want to send our love to our ENTIRE HPC family of pastors, connect group members, special "adoptive" family members, and members at large who make up our church family. We continue to be blessed by family and friends and followers of this blog and his facebook page - we are so grateful for your continued notes of encouragement, financial contributions to his medical fund, emotional support and the unending prayers. We hope 2013 will be prosperous, joyful and filled with many unexpected blessings for each of you. Thanks again for keeping us in your thoughts. Kodi, Brad & Braden Wilson

HURRICANE ISAAC

Well technically this is Braden's THIRD Hurricane. And each one has had it's share of drama with Braden. The first one was Hurricane Katrina - we found out we were pregnant with Braden the day before we evacuated - and since then we have been told that he should have never been conceived, died in utero, and been stillborn. A beautiful soul that was never meant to be in the world was given the chance to write a story of his own about fighting through your circumstances and never giving up despite what other people may tell you and about how things are "supposed to be". The second was Hurricane Gustav. If you've read this blog since the beginning, then you know this story. But if you haven't ever read that post and the 80+ days post Gustav, the quick version is that Braden was not doing well when the storm hit, we were turned away from the supposed "Special Needs" shelter, the hospital couldn't take us, a tornado took off the roof of the building we rode out the storm in, we lost power during a time when Braden started getting worse, and 1 day after the storm we were admitted to OLOL to have surgery to get a trach & a ventilator after we resuscitated him 16 times while the State of LA hung us out to dry. Now Hurricane Isaac. Even though we lost power before the storm even hit us with any kind of real wind or rain and Braden was "seemingly" fine. And then in the midst of the strength of the storm, Braden stopped giving any urinary output. We pulled out all the bags of tricks we had - cool washcloth, warm compress, hot bath, lasiks (medication, and 2 failed cath attempts, the final night of the storm I got the hospital PICU on the phone to see just how long we could keep from bringing him in... 2 seconds before the resident came on the line, daddy got a "miracle" cath - and we got to avoid trying to get to the hospital during the middle of a hurricane with flooded roads, downed power lines, no street lights and rain so hard visibility was in FEET! Thanks to all our prayer warriors who jumped immediately into action and started praying for us in the 11th hour!! Today before lunch, the power came back on after Brad had left for work to open his facility for the LSU community. I stayed back with Braden, but also cleaned up the back yard by raking up 3 trash cans FULL of leaves & limbs, hauled some larger limbs for our neighbors, cleaned up "camp Wilson" in our front room, got Braden's room put back together, etc. In the afternoon I discovered why his output had slowed so much in those tense hours - he was passing kidney stones. To my surprise, he showed no signs of distress or discomfort. A trooper through the storm (shall we call him STORM TROOPER?), and a trooper as he deals with complications of his disease. Tonight we count our blessings as we don't seem to have sustained any real house damage (Gustav took our chimney cap), and we have power restored as others still remain without. Tomorrow is a BLUE MOON (the second full moon in a month) which my mom says is good luck because they are so rare. It seems OUR luck has turned around and we go back to work for a day before the Labor Day weekend begins. This week we need to schedule a follow-up for possible kidney stent removal and a few other doctor visits for Braden. Thanks so much again for all your love & support. Knowing we are watched & loved by so many gives us the courage and renews our strength for this journey we are on. With love, Kodi-Brad-Braden

Make A Wish

So we've been working with Make A Wish for nearly a year, now. We tried getting Braden approved for a warm therapy tub. We would get part of the way through approvals, then they would want more people to sign off on it because of the risk involved with him having a trach. Eventually, it became ultimately denied due to increasing liabilities and risks to the foundation. So we began looking for other things we could do for Braden.

Eventually we came up with light therapy options - so we started sending ideas to our wish team, not knowing what we would ultimately end up with. We narrowed Braden's wish down to our version of a room "make-over", by adding illuminating options to enhance his lighting experience! He loves the changing colored lights I've put over his bed, so we decided to take that concept and take it up a notch:-)

If I figure out how to post videos, I'll post them too!!

Thank you 63 Games

March has been a great month for us, and April is shaping up in impressive fashion. I have SO MUCH to tell you about, but need to break it up into a few posts to give each the credit they deserve!!

We first would like to thank Luke Lutrell & wife Kristen (Wichita State U alumni) for thinking of Braden and including him as the official teammate of this year's online brackets. We are so grateful to be the recipient of this charitable donation! Braden will receive a check from the 689 entries made, to total $1,285 for his Medical Fund!! We are truly grateful to everyone at 63games.com who helped make this possible, and thanks to our families and friends who did a bracket to support us - we are truly blessed and grateful for each person who provides us with financial and/or emotional support.

Luke also convinced his friend who owns IL VICINO in Wichita, KS who also hosted a fundraiser for Braden's Medical Fund. Many friends and family came out to support us. Believe me, we are REALLY FEELING THE LOVE from WICHITA!!

Brad topped of the tournament by working security at the Final Four Championship Game - as usual he met a lot of celebrities. Somehow, he always finds a way to be in the middle of the action! :-)

Thanks and love to everyone - we could not raise this child all on our own!
Kodi

He did something NEW!!!

So if you've followed us for awhile, you know that I don't claim anything as NEW behavior unless we've seen it 2 or 3 times as "intentional". Last week, I was carrying Braden inside, and when he had his head down on me, he raised his left arm backward by almost 90 degrees! The nurse Ebony also saw him do it - very exciting. Then the next day, I was telling the story to PCA Erica, who said that when we had him on his side in the crib the next morning - he did the same thing!!

So our bubba is doing something new, despite a downward decline in organ function. I feel like it's God's little way of showing us that we can NEVER give up on Braden, because only God is writing his story. Braden will not be status quo for a Leigh's patient, he will not be "typical" even for his disease, and his story is not over. I love my little fighter, and we cherish every day we are blessed to be his parents.

The next week God sent me 3 rainbows on the ceiling - in some ways saying to me that there is a rainbow after every storm, and the three of us will continue to be faithful in this journey together as a family.

Thanks for reading,
The Wilson's

2011 Recap

Sorry we haven't posted in awhile, but Braden having his own Facebook page makes it very quick and easy to share information. You can see his page at: http://www.facebook.com/pages/Beelieve-in-Braden/184511298252632s

This year was good... we only had as few hospital stays. One for gas in his belly,One for colon back-up and belly distention, and one for failure to evacuate his bladder - creating belly distention. We even had a surgery and a bronchoscopy... and it was done OUTPATIENT!! PRAISE GOD FOR HE IS SO GOOD TO US!!

This year did bring on new problems for us to monitor. Braden's urinary output has slowed to the point that he needs intermittent catheterization. So we monitor his daily output, and cath him when he isn't going like he needs to. When he's not going like he needs to, he ends up with infections, and we have battled a few of those this year.

You know for years we've always battled the monitoring of his temperature, since he throws us hot flashes. Over the past two years, we've started battling his temperature drops. So now we monitor his temperature frequently throughout the day, and have to add rice or corn bags or heating pads to bring his temperature up. Even something as simple as taking him to daycare can drop his temperature too low.

This year we have three caregivers in place - LaTacia, the daycare owner who has kept Braden since he was about 8 months old. She keeps him at daycare two days a week, to minimize moving Braden, and watches him on Saturdays at the house through our PCA agency for extra money. Erica, her sister has been with us for a year now as a PCA (Personal Care Attendant). She splits most of the time with Ebony, Braden's home nurse. Braden seems very happy and stable with this set-up. Everyone gets along great, and Braden's caregivers are so sweet - they miss him when they don't work or when we take him on a holiday or medical trip. Braden is surrounded by wonderful caregivers.

Braden's mediport surgery went great, and the new one is now working so much easier than the last one. In fact, the plan is to get Brad and I trained on how to do the port flush as well. Our anesthesia & recovery went so well, we plan to ensure we get the same anesthetist every time!

Kodi's father passed away this fall, and it was a distraction to our normal worries about how many more Christmas celebrations we will have with Braden. It wasn't until we were with family over the holidays and their inquiries about this April's birthday plans - that it really struck us that Braden will turn SIX this year. SIX people!! An amazing feat for a child who was not supposed to make THREE.

This year's goals include: 1. working on a new fundraiser cookbook for Braden (with fun new sections for cake balls, popcorn and drinks! - so send your great recipes to me), 2. to reprioritize activities to include more time devoted to doing the Lord's work (as we are His hands and feet on earth), and 3. reducing distractions and drama that take us away from peace, family time or our focus on time with Braden.

Brad's job is going really well and a student fee increase passed that will keep him busy with new construction projects for the next few years. After overseeing these projects, other doors will open for him. Kodi's job continues to provide challenges, but we are resting in patience in the Lord for the right doors to open for her, but for now, it looks like those opportunities are likely more than a year away. For now, they both continues to prepare their students for the next step in their careers.

We joined Healing Place Church this year, and had Braden and our family dedicated at a service the second week of January. We are grateful for another year with our precious angel. We are so grateful for your support and your prayers. We continue to take it day by day and remain focused on the little things in life that really matter. Braden is doing some new things this year - he stretches his legs out so straight and hard that they actually shake - hence a new nickname "Thumper", he will occasionally have fake conversations and grunt back and forth like a conversation with him (so cute)(usually putting him in the carseat & he fusses about it), he will "whine" when he wants mommy to rescue him from therapy or bathing, and today, we learned that Braden likes red balloons - he actually tracked it & stared at it - a gift from the dentist (we really like him). So it's the small things that bring us great joy.

We hope 2012 bring you many blessings and lots of JOY as well.
The Wilson family