Sunday, December 21, 2008

Made it to KS... long trip but we are OK

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 PICU unit, it's tough to anticipate all that can go wrong. Mainly none of our converters would allow us to use the heated humidifier Braden needs to be on, so after we turned north enough into cooler weather, we had to stop every 2 hours to put HOT water in his chamber. Then the chamber cracked and wouldn't hold all the water. Of all the hundreds of extra pieces of med equipment we brought extras of, of course, the water chamber was practically the ONLY extra we did not bring. Thanks to our friend Stacey at Pulmonary Care Specialists Inc in LA, she called around 6 different places in Wichita for Nana Debby to run and get the chamber for Braden to have upon arrival. Great teamwork!

So after a very LONG trip, we've settled in at Nana and Grandpa Wilson's. Church at our home church in Wichita this morning was great - we got to see the children's program and catch up with old friends. We've gotten to spend time with new cousin Tristen and new cousin Kohen - Braden doesn't seem bothered at all by the littler babies around.

We wish you all a very Merry Christmas as we wait for the rest of the Wilson clan to make their way from Denver, and then we will be off to Ashland to see mommy's side of the family the day after Christmas for a week in the Dodge City area. Love each other, appreciate one another, and share your joys together for a bright and beautiful 2009!!

Brad, Kodi, & Braden Wilson

Friday, December 12, 2008

First big SNEAUX in over 50 years

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 like this in 20 years, and they say the most accumulation in over 50 years. It was big, fat, pretty lake-effect fluffy snow. The first picture of our tree was taken at 6:45 am. The next two were taken at 8:00 am. What a beautiful morning.

Even our beloved mascot at LSU, Mike the Tiger got to enjoy the snow for the first time... he seemed to be enjoying himself, as you can see.

It has caused quite some trouble with power... it was like rolling black-outs all over the city, and some were still out until this evening. You have to remember how weak the trees were from Gustav, and then to have heavy, wet snow weigh tree limbs and power lines down, it was a recipe for some disaster. The daycare had to shut down because they lost power, and we even lost power at the house too. Just as we were trying to make plans for where we should take Braden for an overnight in a warm place... the power came back on after 3 hours of being "dark".

We were glad that MOST of the city was shut down (but of course, not LSU, they couldn't possibly reschedule finals...) as most folks have NO IDEA how to drive on ice or snow, and why would they? Our interstate over the Mississippi was shut down both ways due to icing they couldn't clear (we don't have any salt trucks waiting around for this kind of thing, and I'm not sure they've ever seen a snow shovel), and another major highway to the airport shut down because over 10 wrecks on a 12 mile stretch brought things to a screeching halt.

Tomorrow is the big fund raiser for Braden's Medical Fund in Ashland, KS. Please pray for a good turn-out and generous pocket books! Thanks for everyone's continuous support, love, and prayers.
Brad, Kodi, & Braden

Tuesday, December 09, 2008

Lessons from Paxton (and Jesus) about life and death

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 diagnosis, his condition, and what that might mean for his future. I'm sure there have been times when many of you as parents faced that same struggle, about how to teach your kids about life & death, and then when will the time be right. I wanted to share with you her story, as I think it might help others out there facing this difficult decision.

Once we had our diagnosis in late October, Shala decided to tell Paxton the truth about what was happening with Braden. With her permission, I am sharing their conversation. Here are her words as she sent them to me, when I inquired about what transpired between them: "Sigh… this is hard……this was a conversation that I was not wanting to have but… knew I had too. We were laying in bed and she was laying there telling me about her favorite part of the weekend. I thought… there is no good time to talk to her about Braden but why we are here and have an unlimited amount of time, I’m going to take a deep breath and go for it.

I started talking about how sick Braden has been. I told her that he has new machines now and they are helping him breath. She asked if she could see the new machines and I told her yes and we went to look at the photos again on the blog. She then said…. “momma, is it time for Braden to go to heaven and be with Grannie Cack?” ( I didn’t even get a chance to talk about the outcome.. she figured it out) Of course I started crying at this point. I said, not yet honey. He is and has been really sick so we don’t know how much longer we will have with him. She cried and said she wants to hold him for a LONG LONG LONG LONG LONG LONG time. She also asked if she could go to the funeral and let Aunt Kodi cry with her…… tear………… She wanted to know if she could give her favorite bear toy to him. She offered to send all her toys actually. She thought they would make him better.

She wanted to know if Grannie Cack would take care of Braden and I told her that she would. She asked if God would take care of Braden and of course I said yes. She told me that Grannie Cack will rock him to sleep every night so I shouldn’t worry about him. Plus- Haley and Sammy (her cats) are in heaven so Braden will have her kitty’s to play with. She also said- she was informing me that when Braden went to heaven, we could not see him anymore but he will always be in our hearts, our pictures and our memories. This coming from a 5 year old…..

She is sad. She said, “ I love my best friend and cousin Braden though.” …… tear…… I didn’t really stop crying last night. She didn’t either. She was laying in my arms and we said a prayer for Braden and she was still crying and then fell asleep. I laid with her for a long time."

I was blown away by the profound AWARENESS children have of the true situation at hand. Don't discount their feelings and awareness of the situation and think it might be too big for them to grasp - they will surprise you. We are so blessed to have a wonderful and loving cousin for Braden to look out for him in every way!

We sometimes wonder why this is happening to such a sweet little boy, and this time of year we are reminded that God gave His only son so that WE might live. What a sacrifice. Not that we compare Braden to Jesus, but I wonder what my son will give others in his time on earth. In talking to other moms who are blessed with healthy children and friends with relatively "normal lives", here is what I HOPE Braden will give your families:

* An appreciation for each other while you are blessed to have one another. We are reminded many times we are not guaranteed a certain number of days on this earth. Hug your children every day, and tell those you care about you love them, EVERY DAY.

* Appreciation that your families can express your love for one another. We will never hear "momma" or "daddy" or those simple words "I love you". When your child won't quiet down, be thankful they have a voice to express themselves.

* Appreciation for every little accomplishment in your child's life, so many will never reach "normal" milestones. When you are tired of driving them from this practice to that rehearsal, be thankful they are able-bodied to be able to enjoy things they love to do. When you tire of playing with them, be thankful they are able to communicate and connect with you in play.

* Appreciation for your health, your children's health, your family's health - may you never take something so seemingly simple for granted.

* An appreciation for "diversity" and diversity awareness. We are lucky to practice perfect and unselfish love every day for a child the world may see as "less than perfect". But we have been chosen to care for one of "God's favorites", a responsibility we do not take lightly. I know what it's like to look at a family like ours and think, "Thank God that's not us"... but you never know what the future holds. We feel blessed every day, and know that if you are ever in our shoes, you would feel the same, eventually.

So friends, we hope you have a wonderful and blessed season with your families. Don't forget the REAL "reason for the season" John 3:16. Thanks for sharing our lives with us, we are abundantly blessed by all of you every day.

Kodi, Brad, & Braden

Thursday, December 04, 2008

95th Percentile!!!!

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 and had to be care-flighted to Texas Children's, they had him on some medicines they said may stunt his growth for awhile, and they did. At one point we were merely in the 5th percentile for his age! Our most recent visit to the pulmonologist revealed Braden has caught up in his height (I told you he grew in the hospital!!) and is once again in the 95th percentile!!! That is music to our ears to know that he has a chance to thrive once again. He grew out of all his clothes by the time we got out of the hospital, and we had to go buy him new, bigger pants!

Braden's blood test came back that there were no DNA mutations in his blood. We don't know what this really means for the overall picture of Leigh's yet, but we do know it means another consult with the genetic specialist at TCH. We are still waiting on a second test done on his muscle to come back too.

Mommy wanted to get Braden some lights that change color... and I did find some at Wal-Mart that glow white and then to multi-color! They can all stay on together, or change from white to color in a variety of speeds. I created a "LIGHT CANOPY" for his bed... and he REALLY seems to be loving the lights!! I think we may keep them up all year for him. We have even hung a fiber-optic angel that changes colors too - so now in addition to the corner statue angels, the hanging fabric angel, and the angel sitting above his window from the local Angel Ministry... Braden is certainly being watched over:-)

We had some family pictures taken recently, so we will post some of those to share soon. While out doing Black Friday shopping with the masses, we found a second frog ornament we just HAD to have... we love them both - even though they are the only non-USA things on our tree:-)

Sister-In-Law Jenny Betschart has organized a soup supper benefit for Braden, and of course, lots of family members are pitching in to help. It's being hosted by the wonderful Knights of Columbus in Ashland, KS and Shala's company is pitching in to help advertise and provide provisions as well - THANKS NATIONAL BEEF!! It's being hosted December 13th, and we are just SO very grateful for the gesture that has me choked up just typing about it. The love we are shown can be overwhelming. We are just so blessed by family and friends God has put in our lives. We spent Thanksgiving giving thanks for so many supportive people in our life, and the love God shows us through ALL OF YOU!! Insurance companies may never cover a "life" policy on our son, but we are so grateful that so many people care enough to help us find a way to plan for future expenses. We can never thank everyone personally who deserves it for helping us.

We are just looking forward to a wonderful trip home for the holidays to be with family, the doc says we look good enough to travel. We can't wait to see old friends, family, and NEW cousins!!! Will write more again soon!
The Wilson's