Saturday, October 30, 2010

Medical Fundraiser - Cookbooks!


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:

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

Sunday, October 10, 2010

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

Wednesday, September 29, 2010

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:

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

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

Thursday, July 01, 2010

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

Friday, June 18, 2010

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!

Thursday, May 13, 2010

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

Saturday, May 08, 2010

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

Wednesday, April 28, 2010


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

Saturday, April 10, 2010

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

Sunday, March 07, 2010

28th admit to OLOL

We brought Braden in on Wednesday, he quit peeing on a regular basis, and was only going once every 12 hours... not at all his usual 8 times a day. It was a bunch of other "little" things that was adding up to a picture of things just not being right. We had to put him on oxygen because he wasn't keeping his oxygen saturation up, his bm's had gotten really loose and infrequent, his temperature was low, etc.

They started running tests and decided to admit him to the PICU and treat for possible sepsis... they thought this because he was hypothermic and not giving output or possibly fighting an acute virus. Once we'd been on the unit 24 hours, the tests showed he probably was NOT septic, but definitely had other things going on. They had started antibiotics (generic) right away... so 2 days later when he was diagnosed with a tracheitis (again), we were already 2 days ahead on that. Later studies would find he was fighting strep pnuemonia bacteria... if you are alerted now, we were too - as this is one of the big ones we had that almost took him at 8 months old. However, this time he's fighting the BACTERIA, not an infiltrated pneumonia in the lungs... so a new 7 day antibiotic will cover us... respiratory all in check now.

Because Braden has a mitochondrial disorder that affects the muscle function, we met with several specialists. We did an echo on the biggest muscle, his heart, and got the all clear there - still don't have to follow a cardiologist in clinic. YAY! Great news that we don't have to worry about that on top of everything else.

We met with the dietician to review his caloric intake and overall volume... her latest chart showed Braden coming closer to the curve for his BMI (body mass index). Great news, as forever his height and weight have been disproportionate and have kept him off the curve for a long time. He still is, but he's coming closer to getting ON the curve:-)

His hypothermia is now a result of the same neurologic disfunction we've seen since birth, we are just used to dealing with the high temperature side, not the low temperature side. He seems to have evened out for 3 days now, not requiring use of the Bair Hugger... which looks like a blow-up air mattress for the pool, that blows warm air down to the patient.

We consulted with the GI doc, and have agreed on a new plan of care for Braden in that area as well. We are seeing a slow down in his ability to break down his food, and in intestinal function, but he is satisfied with our recent adaptations to his feeding regimen. We will adjust some supplementation to address some issues here.

Our final frontier is renal and urology... the ultrasound a few days ago showed Braden's kidneys are more cauliflower shaped instead of rigid bean shaped, which affects how they function. It showed that parts of his kidneys are calcifying, so we are adding supplementation to deal with the build up of calcium, and adding vitamin D and other things to help with the loss of calcium from his bones due to his lack of mobility. His bones are becoming thin and fragile, the vitamins should help address that for now. Tomorrow an ultrasound on the bladder will tell us if it's emptying all the way. The good news is that when the catheter was removed, he's been back to peeing on his own... we just don't know yet HOW well the bladder is doing on it's own.

It's unknown why his urine is carrying so much mucous, but we do know that it's NOT normal, and we will have to continually monitor Braden for future blockages.

We hope to find medication or supplementation intervention to resolve our issues for now, but surgical options may lie in our future. For now, just pray that God will lead our specialists to the answers that are right for Braden.

Thanks for checking on us, our hope is that we get to go home tomorrow, but only time will tell.

Braden, Brad & Kodi

Monday, February 22, 2010


So when we were holed up in the hospital in the Fall of 2008 getting Braden's trach, and then his new vent after the first one failed, one of the social workers there helped us fill out paperwork from a grant foundation that grants wishes for children under the age of 3. You can choose from three different packages - one was a gaming/video station, another a toy & music station, and the last a "comfort" station which would provide books and songs and maybe a chair.

After long discussions with our wish coordinator at Children's Wish Foundation International, Emily concluded that a traditional "comfort" station would not best suit our needs, and we asked her if we could just focus getting Braden a comfortable chair for his room, where mommy or daddy could hold him comfortably, as he has long since outgrown reasonable use of the glider.

With Emily's help, we were able to find a leather chair that glides and reclines, so that when the time comes for us to sleep with Braden, both parent and child will be comfortable. AND BOY IS IT!! Braden spent Sunday afternoon in the chair with Mommy giving it a good test drive. Braden was SO happy and content, it just warmed my heart to know that he was happy snuggling like that, something we don't get to do very often since cuddling like that requires time in the front room on the vent battery. And although mommy has lots of back problems, after she fell asleep with Braden in the chair and got up - she didn't hurt either!

PRAISE GOD for his many blessings and bringing our family a little bit of "comfort" with our little man. Hard to believe he will be 4 this April... we are thankful for every day we still have with him.

The cookbook is coming along and might be ready for distribution this summer!! We will keep you posted.

Thanks for checking on us!
Kodi Brad & Braden

Thursday, February 04, 2010

Better late than never...

Our Christmas trip home was quite the journey - as most are with us. It was a total "Griswald Christmas" as the craziest little and big things seemed to happen... from the van not starting to banging doors into barricades to trying to find power for Braden when we lost it at the farm.

It was so great to see our family and spend time with them. Many wonderful memories - thank you so much.

Braden with grandma Patee

Braden with Grandma Wilson

Braden "singing" to Gram

Betschart boys with their guns

Betschart Grandkids (& uncle Shane)

Wilson Stockings - lots!

Wilson Clan

Icycle at the farm

Feathers my sis uses to make GORGEOUS ornaments!

Ethan & Gram

More pics to follow from xmas soon, and an update from our HOUSTON visit to the Mitochondrial specialist.

Love & Hugs,
Braden, Kodi & Brad