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

Stones...

Our poor little guy has been battling with these stones for several months now. We've treated the pain and stopped using a drug because of its ability to cause stones. We had a sonogram this morning and a consult with his nephrologist. We decided that we would add 200cc of extra fluid to his diet and try to flush them. Before we even gave him the first his set of fluids he passed what appears to be (3) stones in one diaper. We still have to send them to his doc to confirm, but his demeanor has changed for the better. Hopefully this will be the end of this chapter.

Long time, no talk...

Some of you might think that we've dropped off the face the of the earth. Well, we haven't, it's just been a tremendously busy spring.

In March Braden was admitted to the PICU, admit #37, with what we thought at the time was a possible blood infection. He had some labs drawn on a Thursday, and the next morning we received a call early from his pediatrician. She advised us that we need to get to the PICU right away. His labs came back with a possible staph infection in his blood.

We were directly admitted to the PICU at OLOL and within minutes they had started a broad base antibiotic. They took a second set of labs to compare. Needless to say, we were quite worried because this has never been an issue for us. Four hours went by, nothing was growing in his labs. Eight, twelve, sixteen hours later still nothing coming back. After the first 24 hours it was concluded that the original set must have gotten contaminated. Our medical team felt awful, but as I assured them, I would rather go through this 100 times and it be wrong, then the one time we don't and it's actually a problem.

In April, Braden was admitted again, #38, because his belly had become distended. As you can imagine he was in a lot of pain and we needed to get the trapped air out. Once he was in his room, they hooked him up to a pump to syphon out the air. The docs determined that it may have been caused by a mixture of some of his meds. Because Braden doesn't move that often, he has a tendency to have air not pass through his system regularly. After going through his chart and resuming his feeds, he was able to tolerate it and we were discharged after a few days.

Also in April, we invested in getting Braden an iPad 2. Naturally he does not receive any direct benefit, but we got it to transcribe his chart onto. His charts are so large, we thought it would be wise to download the material and save it to the iPad. Which ever one of us goes to his appointments with him takes it and records his visits. It has come in handy in recent visits because his meds are loaded into the program as well (My Medical for iPad).

During the later part of May we made a visit to our docs in Houston. This past spring we have reconnected with many of our docs at Texas Children's and UT-Med. We now are on a 3 month rotation with them and so we"ll be make more frequent visits. We are seeing a Mito-doc, Immunologist, geneticist, and his epileptologist. We've had some good conversations and hope to continue to pursue answers. Certainly Braden's diagnosis won't change, but we hope to find answers to what it means if we have additional children.

That is just a quick snap shot of what our spring has been like.

You can follow Braden on:

Facebook: "Bee-lieve in Braden" page

Twitter: @babybdub

Making Transitions

So after our battle last year to get an emergency slot on the NOW Waiver, most of you know, we are now approved after getting our day in front of a judge, and just this past October got approved and FINALLY got Medicaid!!!

In November, we started training some PCA's (Personal Care Attendants) for Braden. They were approved to watch him during evening and weekend hours. God has blessed us already with Latacia's family... she is working through a divorce and was the first to ask if she could have hours... OF COURSE!! Then her sister wanted to learn how to take care of Braden too... so she has been training with us since November.

It's not this instantaneous weight off our shoulders, because with Erica (LaTacia's sister), she's learning how to read Braden's signals and know what to do when he beeps or seizes, etc. She has caught on pretty well, but she's not confident enough with her training to yet leave her for more than a few hours. But it has allowed me to cook a meal without stopping 5 times to answer Braden's beeps, get some side work done, and just have some "down time", even if it's just grabbing a shower without worrying if Braden will go off while I am in there!! ;-)

You might be asking - well, where is Brad during all this? He works 5 or 6 nights a week doing basketball games. He referees for middle school and high school, and does the score table for both LSU men and women's basketball. Yes, it keeps him very busy, and makes me more of a basketball widow than most coaches wives:(

So we are working on getting Erica comfortable, and can run to the store, and last night was able to enjoy a dinner out with Brad's aunt Jeannie & uncle Jerry who stopped through on their way home to Pensacola from Baldwin, LA where they were doing mission work. While it was sad to leave Braden home, it was nice to have adult conversation and some relaxation without having to worry about addressing any Braden issues:)

At a glance, you might think, "oh, it's great that Braden finally has someone to help watch him so Kodi & Brad can do... xyz". That is true - but it takes a LOT of training and time to get a PCA up to speed. It's not like they just come in, and we can walk away. So every single person we bring in is an investment of time and emotion. But we are happy that we are moving down that path where Erica will get comfortable, and we can leave her for longer periods of time.

Up next - we will be interviewing and trying out home nurses!! This too will not be a quick or easy fix, and will require a large investment of time. But it gets us closer to giving the best care for Braden.

I'd like to tell you he's just fine and stronger than ever, but the reality is that we are seeing signs of his decline. We no longer have weeks or months without any "incident" of sorts. Every day we are monitoring a new situation, and it can be stressful, to say the least. We literally have a new focus every single day of the medical variety to monitor and address with Braden. It's stressful, and that's when we can lose focus of taking care of ourselves, so it will take extra effort to ensure we take care of us to be the best parents and caregivers for Braden we can be.

Today, we dropped Brad's vehicle at the dealership to get a back seat fixed, and then went to the grocery store together. As we were walking out, I realized that it has been YEARS, since Brad & I were able to accomplish the simple task of going to the grocery store together. Usually, one of us is home with Braden, so we aren't dragging him around with all his equipment just to get some groceries. Today, I'm making a batch of Valentine's cake balls/truffles... Tomorrow, I plan to get in some exercise... a little "me time" every day. GOD knows I am a "work in progress":)