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":)

Medical Fundraiser - Cookbooks!

THEY ARE HERE!!!!!

After two years of forcing myself to measure and actually write down the stuff I make, and gathering some of our most favorite recipes, Braden's fundraiser cookbook is finally finished!! You may order them right now on E-BAY by clicking here:
http://cgi.ebay.com/Say-Grace-Braden-Wilsons-cookbook_W0QQitemZ250718060432QQcategoryZ11104QQcmdZViewItemQQ_trksidZp5197.m7QQ_trkparmsZalgo%3DLVI%26itu%3DUCI%26otn%3D1%26po%3DLVI%26ps%3D63%26clkid%3D4610210827762830881

If you are headed to Ashland, KS the day after Thanksgiving, you may head to the annual window unveiling and pick one up from my awesome sister-in-law Jenny and her sisters, my mom and sister who will have a booth with cookbooks available:-)Or you can put in an order with Jenny too - she's taking orders.

Or if you work at National Beef in Dodge City - see my sister Shala and you can order one from her.

If you know my friend Victoria Fisher, she's taking orders in Chicago!

Of course - the obvious for you folks in Baton Rouge who see me or work with me, of course I am taking orders too so you can save on shipping.

We appreciate you passing on this information to anyone you know who might like to get a great cookbook for the holidays! It's a great cookbook for busy families, as most recipes can be done in less than 30 minutes. Great short-cuts for family favorites, good tips for first-time cooks, and a few impressive dishes for company... along with yummy desserts to share!

Thanks for your support, we hope to make enough off this cookbook to get Braden a new carseat for the Durango (about $800) and a stroller for daddy's vehicle sturdy enough to support Braden and his machines so both parents will be able to transport Braden without getting stuck in an emergency without something to move him in.

Bless you and yours and you prepare for this holiday season!!
Kodi, Brad & Braden

10-10-10 Reflections

As this special date in history occurs, and as Braden's half-birthday approaches, I've been reflecting quite a bit on our life. I certainly understand what it means to live the expression "No rest for the weary". You know how I was telling you taking care of a medically involved child like Braden is like having a newborn - all the time?

If you've ever had a big event you've been planning kind of take over your life, and keep your adrenaline going weeks on end, that's kind of what it can be like. When the adrenaline wears off, and you finally relax, you get sick - really sick. This is what having Braden is like, and when we finally relax, rest and let the adrenaline wear off, we usually get sick, because it just takes over your body because the adrenaline is gone. So any little sinus infection or other, once it grabs ahold of your tired body, it can completely wipe you out.

Every single day, we have a new set of worries, a new rush of adrenaline, a new evening of light or little sleep, a new period of vigilance over whatever ailment Braden faces that day. EVERY DAY. It's a life that constantly keeps us on our toes. Here's the list of things we monitor on high-alert every single day:
1. Seizures - are they under control? Can we stop them if he goes into status?
2. Urine Output - has he gone in 6 hours, have we tried all our "tricks" to get him to go?, will we have to take him to the ER or clinic to have him cathed? Is there a blockage in his tract, or just sediment? Do we just try pushing more fluids?
3. Comfort Level - is he comfortable? Is he having kidney pain today - is that why he's so whiney? Or is he whiney for other reasons? Will I be up with him again tonight to manage his pain and comfort him?
4. BM output - when was the last time he went, does he need mirilax or a suppository or more water in his diet today to help?
5. Body Temp - is he too warm today, having hot flashes or is he too cold now, is his heart rate dropping because he's too cool? Do we add blankets, take them away, try fans or try snuggling for body heat?
6. Drool/Snot Patrol - yeah, really. Is it clear, or has it turned colors? Do we need to give extra breathing treatments today? Call the doctor to get a sample taken because it's turning colors or getting thick?
7. Port access - will the nurse get it this time? Will we have to stick him a few times to try access? Will we have to take him to the hospital because we can't get access? Will this mean another surgery to replace the port if we can't?

These are the set of day in and day out worries that somedays feel like they will age me twice as fast. But the rewards of caring for a special child like Braden are hopefully being stored up in heaven for us. It's hard to let other worries in life seem more important most days, it's usually other people without this kind of perspective that try to drag you down into things that don't really matter. I'm thankful for the people in our life who, because of Braden, know what things in life really are important, and are forgiving on the days we may fall short when the issues of the day seem overwhelming.

Thanks for your continued prayers for all of us. Braden, Brad & Kodi

Mito Awareness Week

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

Looking for New Diggs

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

Anniversary thoughts & more

First family photo
Today is my 10-year anniversary with Brad. As I reflect today on my marriage and my child, my mind is really all over the place. Before I married, I didn't really know if I wanted children, as I thought I was too career driven and selfish to even consider it. Funny how finding a true partner in life can really change how you feel about something like that. I never questioned that one day Brad and I would have children together - he's a natural mentor and I just couldn't him imagine not teaching his own children how to do things.

I am glad we took our time to get pregnant, we needed some time together where one of us wasn't in school and we weren't both working 2 and 3 jobs just to make ends meet. Our thought process is that we needed to really connect as a couple before bringing kids into the family... because when they grow up and graduate... it will once again just be the two of us. When we did decide we were ready, we knew God would provide us with the right timing. Just when the 16 hour days were over and I was settling into a slightly more relaxing work setting at LSU, we got pregnant. Even the timing was dramatic, as we found out when we evacuated from our home to bunker down for Hurricane Katrina.

In dramatic fashion, the pregnancy was not usual - as I carried 8 lbs of EXTRA fluid with Braden. After bi-weekly sonograms revealed his organ functions were normal and his practice-swallowing seemed normal, we weren't given any reason to worry. Having never been pregnant before, my horrific tear-jerker back spasms would later present themselves as labor pains - yes, I got to have back labor. Lucky me. They gave me the epidural, and it was nice - but did nothing to touch my labor pains. They gave me morphine, although I warned them I might be allergic. Sure enough - after an urgent C-section, Braden would come out blue, and mommy wasn't breathing enough on her own and spent a night in ICU just like Braden on oxygen.

Retrospectively, we know that Braden is a POOR swallower, hence all the extra fluid. And I think we will find a new Maternal Fetal Medicine doc... not that I could expect them to have any kind of diagnosis for Braden in the womb, but I was certainly not given any reason to worry about him. So in addition to all the emotion of having a first baby, I was also trying to deal with the difficult first days where they were telling us things were definitely not right with Braden, but they just couldn't figure out what's going on.

Once we knew our little boy would not be "normal", I had to adjust to all my broken dreams of what I thought life would be like with our son. Brad seemed to take it all in stride and really helped me realize that I too have always been an optimist, and have handled every difficult situation in my life with optimism, hope, with a little dash of reality and healthy sense of humor. With that, I gave it all to God, and He has lead us on our journey of hope, despair, joy, anxiety, anger, love, optimism and faith.

The divorce rate among special needs parents is 80%. Perhaps it is because Brad and I weathered many storms early in our relationship, but we both feel that our situation with Braden has only made us stronger as a couple. I think the thing we were both afraid of the most has become the biggest blessing we could have ever been given. We only prayed for a healthy child, but that's not what God chose for us. It's hard to believe the thing I was most afraid of could have been the biggest blessing in my life. Another lesson about just giving your life to God... He knows what's best and when you open yourself up to that, He really will bless you ways you cannot fathom!

So before we expand our family, we go the chance to reconnect again on our recent trip to St. Lucia to celebrate our 10 years of married life together. It was strange to just have one another to worry about, and a vacation well-deserved and very much worth it! Once again, we are just taking our time, and telling God we are "available" to have another child, as I'm sure He would be laughing about whatever "plans" we might be making:-)

My son is outliving his prognosis by two years now, and we look forward to celebrating another half birthday in October. We continue to enjoy every day we are given with him. Our marriage is also beating the odds, and I look forward to another 10 years with the man God chose for me.

Have a wonderful 4th of July holiday, and thanks for checking in on us!
Kodi, Brad & Braden

Brad & Kodi celebrate 10 years

To celebrate our 10 years together, we planned this trip to Saint Lucia in the West Indies, southern caribbean starting two years ago, to renew our vows to one another. These past four years with Braden have been anything but easy, and as we plan to grow our family, it was time for us to renew our commitment to each other and reconnect before we bring another life into the world and our home. Raising a special needs child certainly has it's challenges, and raising a terminally-ill child is all that more stressful.

Divorce rate among special-needs parents is about 80%. Research shows that special needs parents also retain 50% more cortisol than our parental counterparts with the same caloric intake and exercise levels. So much of this seems unfair... but our situation has made us stronger as a couple, and we are resolved to make it through all this as a couple and not just individuals. We are blessed beyond expectation by raising our little man, and have incredible people in our life because of him.

So as we took off for the islands, it was very hard to leave Braden, and mommy was very emotional about it. But daddy drove us to the New Orleans airport and arrived in St. Lucia via Atlanta. The road to the hotel was very twisty and turney with lots of switch-backs and hairpin curves - after an hour and a half of that, mommy did not feel so hot.

We got things lined up for the vow renewal, enjoyed time at the pool, took scuba lessons, went on an ATV tour that got us incredibly muddy after a morning rain, rented jetski's, enjoyed a rainforest canopy tour, took a day-long tour of the fishing villages and grand twin mountains known as the Pitons that also allowed us to explore a drive-in volcano, sulphur hot springs complete with hot mud, a freshwater waterfall and grand mountainous views. Brad went on a few scuba trips, and we both enjoyed some time in a private beach cabana, got massages on our "wedding" day,and explored the other two resorts for dinner ventures. The island was simply amazing, and the people were very warm and welcoming, living up to their mantra "No pressure, no problem".

We hope you enjoy a few of the photos...
10 Years of Love (July 1, 2000)
Kodi & Brad

30th Admit

Sorry it's been awhile, but life is all crazy around here. We had Braden home for about 4 days, and then we couldn't keep his oxygen sats up... so we went for an admit and boy was it crazy! First, his port would not cooperate. 3 different nurses tried to access, and the third was at least able to flush the port, but it meant we had to start a protocol on the port known as TPA... it's an enzyme treatment meant to help dissolve the probable sheath that has formed just behind the port. The good news, is that the protocol WORKED!!

We finally got up to the PICU to address his respiratory condition, and the best news is that we got to finish his meds for the infections via IV, which has a quicker, stronger reaction to his infections.

We were getting so close to our trip, it made us incredibly nervous, but Braden reacted to the medication well, and he showed immediate signs of improvement. So we took the little trouble-maker home, two days before mommy and daddy were set to fly off to Saint Lucia.

So Latacia moved in with Braden... and we were off to St. Lucia!! More on our trip next post!

29th OLOL admit and back home

(Braden at OLOL)

After 4 1/2 days in the NICU, Braden's medical team agreed we were ready to head back home, and keep treating his 5 trach infections at home with 2 oral antibiotics (okay, they are still 'oral' even though we administer through the G-tube) and nebulized tobramyacin. This time the docs made sure we had all our scripts filled BEFORE we could go home. Last time it took 3 days for us to get all of them.

So Braden is already feeling better and just more "juicy" than usual - lots of bibs and suctions through the day. Wouldn't you know it, our friend JazMyn was hospitalized yesterday and released to treat her very own strep infection at home, for fear she would catch something else while hospitalized if she stayed. So now the princess and boss of Braden is taking her own medicine too. I TOLD YOU these kids always get sick at the same time!

JazMyn and LaTacia are gearing up to come stay at our house in a few weeks... soon Brad and I will be leaving to take our 10th anniversary trip to renew our vows in St. Lucia. We've been planning it for two years, and faced many hurdles trying to make it happen, but we really want to reconnect before we start trying for another child. Yes, we've decided we are ready. It was a very personal decision for us, and one that we've been weighing ever since our diagnosis Fall 2008. But 11 rounds of genetic testing have come up with NOTHING.

Braden seems to be that fraction of a percentage where Leigh's just happens with no real explanation. While there is a genetic form, it's unlikely that we fit in that category at this point. We know of several families facing this disease, and of all the families, we've only heard of one of them having two children with a recurrence of the disease. I think the real push we've felt to try again, is that we were ready to adopt a child in the hospital the same time as Braden on a ventilator because he needed a home, and if we were ready to take a child home that is not even ours and has medical needs, then why wouldn't we be willing to care for another of our own, special needs or not? I think it was then that we felt God was calling us to have another. I know that everyone may not agree with our decision, but I hope you can at least respect our decision that we have not entered into lightly by any means.

The world that has been shown to us through Braden, shows us that God does not make any mistakes. God provides many blessings through the most difficult of situations, and we still have to be willing to trust that He will lead us to the right decision. So yes, we are ready, but the WHEN is still in God's hands, if that in fact is His will.

So we are excited to head to St. Lucia for our first vacation since our honeymoon, with a chance to reconnect with one another, and re-energize our relationship and our spirits after a rough 4 years raising Braden. We hope to have many great photos to share once we get back... we leave on May 25 for 9 wonderful days, and will renew our vows on Memorial Day while we are there. Pray for us to have a safe journey, pray that Braden will stay healthy after this recent "tune-up" for LaTacia, and that LaTacia and her family will be given any guidance from above necessary in our absence. It's a big leap of faith for all of us, and we are so grateful for LaTacia and her family to give us this opportunity. Let's also pray that Braden remains healthy and behaves while we are away for an uneventful journey here in LA while we are gone for a little over a week. JazMyn will have lots of adventures to tell about how she moved in with her "white brother", like she calls Braden - adorable, just love that. I know Braden will enjoy having her so close for those days we are gone.

Thanks for checking on us,
Braden, Brad & Kodi

Another Mother's Day in the Hospital

Braden's calendar buddy & seizure fighting friend, Addie Claire

Well, Braden has not been feeling well for about 8 days, fighting the yucky green junk. We began intense nebulizer treatments and diligent cough assist, extra pedialite all to help thin his secretions and keep his airway clear. After 5 days we saw green become yellow and an increase in his usual "juiciness", meaning things were starting to thin out.

Then 2 days ago he started dropping his oxygen saturation and started running low grade fever. We gave motrin a few times, continued diligent breathing nebulizations and sleepless nights, as Thursday night turned into a marathon of 4 cough assist and neb treatments, a trach change, and even vest therapy. He dropped his sats down to 69 and turned blue - hadn't seen that since before he got the trach. Some of it was due to airway issues, and the other half due to his stubborn "clamping down" he does when he has a sneeze or fit of bad attitude (remember when we would hold his breath as a baby when we gave him a sponge bath??). We put him on some oxygen, and his sats only stayed at about 91 - 93 even with the help. We decided Friday morning, even though he had done better for a few hours, that we would take him in.

Typically, once we supplement oxygen, it's 24 - 48 hours that we end up in the ER. This time we decided to move ahead of the curve. Getting him accessed through the mediport in the ER was a giant ordeal, as has been the case sometimes - but they finally got it. Blood gas, CBC, and chest xray all showed pretty normal readings, but we also brought in a sputum culture to get thing growing in the lab.

Today they said the cultures are growing the usual suspects - staph and maxilla (I think). They will wait to administer any antibiotics until tomorrow to see if it's really needed. My guess is they will add something tomorrow - as he continues to secret mucous out of his eyes and his g-tube area is "yucky" - indicating he's fighting some kind of infection.

While we are here, the pulmonologist wants to address his leaky trach and finally try the TTS trach - he thinks it will help his oxygen saturation level and function in some ways even better on the ventilator settings - as they aren't quite where they should be because of his leak. His leak usually just sounds like a snore:-)

So that's all for now... we got to spend last Mother's Day outside of Our Lady of the Lake, but evidently, this is Braden's idea of mommy-son "quality time", so we will be here for our third Mother's Day together in the hospital. We started that way, celebrating my first in the hospital with him in the NICU, the second in the PICU, and now a 3rd in the PICU. It certainly makes me give thanks for our special snuggles and our struggles too. He proves he is a fighter over and over, and that prayers of all those looking in on us really do get answered - GOD IS SO GOOD!

As Brad and I prepare to take our 10-year vow renewal trip to St. Lucia, we are thankful to have time to really get Braden healthy in time for our trip away. LaTacia, our absolute God-send of a sitter will be moving in with Braden while we are away, and JazMyn will have lots of time with the little boy she affectionately refers to as her "white brother":-) We are thankful for Braden's "daytime mommy" LaTacia, and the other caregivers at Kidz Korner who also learn to care for him - Christie and Ebony, and of course Ms. Carolyn, Tacia's mom. We love all of you for loving our son and providing a safe and warm environment for him while allowing us to earn two incomes to provide for our son.

Happy Mother's Day to our own Mothers - we love you for all the special ways you love us and our son. Happy Mom's Day to all the moms and grandmoms out there - your work is evident and appreciated!

Braden, Kodi & Brad

FOUR YEARS OLD!

Braden getting "Happy Birthday" sung to him from the Wilson extended family...


Although we celebrated Braden's life at the Seize the Day walk two weeks ago, this weekend was his actual birthday. We snuggled, cuddled, stretched, got a bath and a haircut - big day in Braden's world. He was very content and satisfied Sunday. Mommy and Daddy had KS steaks, grilled veggies & fresh strawberries and pound cake muffins to celebrate.

As I reflect on the four years I have been blessed to be the mother of a child with a ministry that knows no bounds, I am content too. We've traveled great distances to ensure our families have had chances to know and love Braden. We've traveled great distances to see specialists for answers and guidance. We've traveled many times on that emotional roller-coaster with Braden over his health, his comfort, his care and his life expectancy. I'm trying to take a page from Braden's book... where we are now focused on QUALITY of life, and I want to do the same. We have accepted we don't know how many more tomorrows we will get with him, we've accepted he won't be president, graduate from high school, play sports or ever be able to tell us he loves his mommy and daddy. We relish the today's that we have to snuggle quietly with him, as we silently grieve the dreams we once had for our future son, and silently thank GOD for all the blessings we couldn't foresee when our journey began.

As parents, I think our biggest fear was really having a child labeled "disabled" or "handicapped". But now I am so grateful to have a child who has given me so many lessons on life. How foolish I was to let fear of that unknown possibility overshadow the multitude of blessings that would later be showered upon this family. I would have missed out on so many blessings, and so many amazing people in our life, if Braden was not everything God intended him to be.

Today my prayers are of thanksgiving for all that's been brought to our life with this little angel. I pray that when the time comes, I will be OK when Jesus comes to take him back from me, knowing he will be fully restored and one day I will get to know what a hug feels like from my own son, and to hear the words "Mommy" or "I love you".

Today we will thank God for his miracles.
Today we will live in the moment.

Thank you for continuing to be a part of our world, and showering us with your love and support near and far!
Braden, Brad & Kodi

Seize the Day Walk and Birthday Party

Today we celebrated Braden's FOURTH birthday (can you believe it??) at the Seize the Day Walk. Many friends and family could not make it today, however we were blessed with many who could make it and blessed with PERFECT weather!

We celebrated with Braden's Team BEE-LIEVE on LSU's campus today. Good food, great friends, wonderful weather.

Braden was slightly fussy the past few days, but we think he's passed a very small stone, which could mean the kidney doc's plan to break them up with Poly-citrate might just be working! Braden only seemed fussy, not in extreme pain, so our hope is that God is giving us a break on this one.

Enjoy the pics, sorry it's been awhile. We are just trying to enjoy our time with Braden and make the most of the time God is giving us with him. Thanks for your continued support and love!

BRADEN, Kodi and Brad