Trick-or-Treat on Sorority Street

Last night, Braden (a.k.a. "Dog the Bounty Hunter") went trick-or-treating with his buddy Jackson. The Panhellenic council at LSU hosts a safe trick-or-treat evening on sorority row for LSU families. It was fun, and some people thought Braden was a baby-doll, since he had on a wig. I thought that was funny enough - because that's a lot of trouble to go through just to bring a baby-doll trick-or-treating (not to mention a little MENTAL!!) :-)

Our little monkey-friend and our bounty-hunter made lots of friends, and some people got such a kick out of Braden as DOG they took pictures.

We head to BOO at the ZOO on Sunday, again with Jackson, and then on to Sear's, where the whole family will have our memories captured - starring Braden as DOG, Kodi as Beth, and Brad as Leeland.

Stay tuned for more halloween pics next week! Braden is feeling better, but still having trouble keeping his sats where they need to be, so we hope he just continues to fight his way out of this one.

The Wilson's

ER Drive-Through, sort-of

Well, not quite a drive-through, we were there for 7 hours last night. THe pediatrician felt it was best to get a chest x-ray and have bloodwork done on Braden, he just isn't himself with his respiratory pattern, and has had a hard time the past few days keeping his O2 sats up. So we have had 2 very long nights in a row, but we got some steroids and antibiotics and will go back for follow-up antibiotic shots for a few days, like we did this morning, just to be safe. The docs think this is maybe a pre-pnuemonia episode, or just a really bad head cold that won't break loose.

The pediatrician also won't let us take any over-the-counter meds due to all the FDA hoop-la about children's meds dangers these days. So tonight we may try some home remedies like a steam in the bathroom and getting the humidifier going, as even breathing treatments every 2 hours doesn't seem to be enough.

We have him on oxygen, really just to help him rest, as his little body is working pretty hard to breathe easy for today, and maybe the next few - we will see how it goes. Say an extra prayer for our little man to recover quickly like he did a few short weeks ago - we know your prayers were felt here!!

Thanks! The Wilson's

Braden and Jackson - buddies for life

Jackson's mom (Doris) just sent me some of the most adorable pictures of our little men hanging out and playing together, and I just HAD to share them with all of you. Jackson squeals so loud when he plays with Braden's hair, it is so adorable to see them enjoy each other. And do you see how happy Braden looks when they are around each other? It just makes me so happy as a mom of a special needs child to see joy on a child's face who cannot yet express a true smile or laughter. We are so grateful to have such special friends... and later this month you will see these two boys trick-or-treating together, so stay tuned for those pictures!!

Kodi, Brad, & Braden (Baby Bee)

A "Real" Getaway to Florida

We headed to Pensacola Friday to enjoy some R&R over the Fall Break. Of course, no trip of ours is ever without some kind of ridiculous story. As we pulled into Jeannie & Jerry's driveway, we heard a hissing noise, and discovered that somewhere close to our destination, we had picked up a razor blade in our tire. Our best estimation is that a carpet-layer in this post-Ivan recovery area must have disposed of the razor on a street somewhere, and our lucky truck found it. So Brad & Jerry hastily headed out to get it fixed before it went completely flat, as the air coming out of it was not a pinhole, but a large GASH in the tire.

We did, however have a wonderful and relaxing weekend in Pensacola, regardless of the welcome party tire incident. We spent Saturday morning at Jerry's master gardener green thumb jamboree. We got to see lots of local plant varieties and Jerry & fellow master gardner Karen's contribution to "whimsy" with their bottle tree. This is their version of a bottle tree - to add whimsy, but if you research a bottle tree's origins from the South, you will find that it's meaning has deeper roots, and individual meaning. Saturday afternoon Brad & Braden watched the LSU game while Jeannie & Kodi headed out for some shopping. That evening the Patee's treated us to a special meal, complete with birthday cake for Kodi.

Sunday morning we took a long walk along Johnson beach before packing up to head back home. Braden was a hit with his adorable beach wear, and really enjoyed our walk on the beach, as he stayed awake for quite some time to take in all the scenery. Our trip was too short, but we hope to make it back again in the spring for another visit. I know Hampton really enjoyed watching over Braden and letting Braden pet him, so we hope to spend more time with all of them again in the new year. Thanks to our wonderful host family for a very relaxing and enjoyable getaway!!

Kodi, Brad, Braden

A "Weekender" in the PICU

Braden has been ready for some vacation, but unfortunately the little man's idea of what a vacation is supposed to be like is a little skewed due to his vast medical history at the ripe age of 17 months.

Friday afternoon LaTacia the daycare owner said Braden wasn't acting like himself and she was too worried to leave him to go to her own doctor's appointment. When daddy brought him home, as soon as they got settled, we could tell that things just weren't right with Braden. First, he was breathing extremely hard like he was running sprints around the house. Breathing treatments and suctioning were not slowing his pattern down. He also was moving around constantly and being very active (like a normal little boy) - but that just isn't Braden, and it was like he just couldn't get comfortable and was still breathing heavy. Then we saw his eyelids were purple, which is usually a good indicator he is not well. He had a fever that Tylenol was not helping, the valium was not working either, and his skin started getting real mottled/splotchy-looking.

So Friday night we took him to the ER for respiratory distress, and his blood gases showed he was not oxygenating in his blood well, so they moved us to the PICU at about 1:30 in the morning. Although Braden's x-rays seemed normal and white cell count within range, the docs suspect he picked up some kind of virus. They put him on a new machine - VAPOTHERM - which not only pumps oxygen, but is like a personal heated humidifier. This was also the first time we got to use the MEDI-PORT for IV access, so I took pictures to share.

A funny thing about our visit this time, was that we were in a bay closer to the doors (#4), and we kept passing Braden's bay up... as we are normally in a bay that is two down from where we are (#6). A few of our nurses were even doing it:-) The others kept giggling at us doing it... You know we spend a good amount of time someplace to have a "regular room".

We had the opportunity to go to one of the greatest football games of the year (LSU vs. Florida), but Braden decided he would rather see the game from his personal air-conditioned "suite" at Our Lady of the Lake hospital in a PICU bay. By Sunday he was acting pretty normal, and they let us go Monday afternoon.

After our "weekender" at the OLOL PICU, we have decided to show Braden what a vacation is SUPPOSED to be like, as we head to Pensacola for the weekend to spend time with Aunt Jeannie & Uncle Jerry and our furry friend/babysitter Hampton.

At least our last stay in the hospital was FIVE months ago (our longest spell OUT of the hospital), so Braden is getting stronger, and hopefully our stays will eventually get down to less than two a year!! :-)

We will post pics next week from our Fall Break in Florida - love to all!
Kodi, Brad, Braden

Another Fighter in the Family

This past weekend mommy went to surprise Aunt Shala for her second breast cancer walk. This year marks the second time in two year's that aunt Shala has beaten breast cancer, so mommy really wanted to make it special for her.

Aunt Shala was happy that mommy could make it to celebrate with her. Aunt Shala was more surprised about the pink cowgirl hats mommy made for aunt Shala's team to wear. Mommy had to use her quick thinking to figure out how they were going to keep those hats on in 35+ mile an hour winds that day!! So the boas were punched through the hats to create a way to tie them on. Aunt Shala's hat had a tiara, of course, to designate her special day. Aunt Shala even 'took me with her' and pinned my picture on her race number again:-)

They ended the celebration of walks and runs with a survivor's parade, and then the whole team went for lunch to continue the celebration.

Mommy stayed with aunt Shala, cousin Paxton and Gram at the hotel downtown and went swimming, shopping, and relaxed later after a very long day. It was a wonderful weekend, and mommy got to see Nana and Grandpa Wilson too!

My aunt Shala is a fighter, a survivor - just like me.

Hugs for all,
Baby Bee

Destined to be friends - smile for today

I wanted to share with you an e-mail from our daycare this morning. LaTacia will send me updates occasionally to let me know how our little man in doing. I was laughing out loud with this one, and it just warmed my heart, so I thought I would share...

For those who don't know, JazMyn is four, and was born a preemie - she has respiratory issues like Braden, has a g-tube, suction machine, and sleeps on oxygen at night too... she is the daughter of the day-care owner, Latacia.

From LaTacia:

"Just thought I let you know that it has been confirmed that JazMyn and Braden are destine to be best of friends.

Well, Mr. Braden sounded a lil junkie to me and I decided to give him a saline treatment. He was kind of fussy and I figured he just wanted to eat a few minutes early. So after feeding and then starting his treatment, I decided to walk away into the kitchen to put of G-tube supplies and bottle. Braden was still a lil fussy and all of a sudden, I hear Jaz saying "don't worry bout it Braden, it's gonna make you breefffffff betta and it's gonna make you cough". Now mind you, I'm only a few feet away in the kitchen, so I peep in to see. There was Ms. Jaz, rubbing Braden's hand and wiping his mouth comforting him through his treatment. So I smiled, but didn't say anything. Then she tells him "put the mask back on before momma see it off and make you get another treatment". I fell out laughing. Kids really do pay attention girl."

Have a great day,
Kodi, Brad, Braden, LaTacia, & JazMyn

Geaux Tigers! - LSU Fall Pics

Football Season update

While Braden has been doing very well at fighting off another respiratory infection, it caught up with mommy, but antibiotics are keeping everyone else from catching it to that degree.

Recently we had the Heckert's over for a weekend playdate... as you can see the boys decided to play with each other on the floor, before the mommies decided to do some playing with Jackson's little wonder ball, with a make-shift game of soccer and rolling.

The first LSU football game was away, and we spent time with our friends the Richard's, who shared their bunny with Braden to experience the soft fur texture, which Braden seemed to enjoy a lot. I think he wanted to take a nap with that bunny!

Daddy joined a friend for the first home LSU game this past weekend, while mommy and Braden stayed home to watch the late-night game on TV. As you can see, we were all decked out to cheer on our Tigers. Later this week mommy will post pics from our "Football" photo session for all to enjoy.

We are busy as ever at LSU, and Braden continues to make changes too, just not all of them good:-( We will be seeing the local nuero tommorrow because of a new kind of seizure he started having. At that time we will find out if more testing will be necessary, but we expect a new EEG and a new MRI will be in order. We will find out more about when/where we will do a muscle biopsy as well.

Thanks for checking on us!
The Wilsons

Trip to Audubon Aquarium

This weekend we went to the Audubon Aquarium in New Orleans with friends Matt, Kristen, and their son William who turned one year old on Saturday. We took the boys to explore all that it had to offer - lots of sealife obviously... the highlights were the seahorse & frog exhibit, the enormous Gulf Coast tank with lots of sea turtles, sharks, eels, and more... the touch tanks and play areas were wonderful too. The boys really liked watching the otters and penguins too!

After our adventure at the aquarium we took a walk on the levee to Jackson Square to Cafe Du Monde to celebrate William's birthday with beignets and iced coffee:-) William like the powdered sugar more than the fried bread...

Braden got William his very own froggie that makes noise, a little white albino wind-up alligator, and a sippie-cup with William's name to wish him the best birthday!! They were so adorable together - you can see how William wanted to "touch" Braden - but there is no soft or hard discernment yet:-) Any touch is a love pat!! Cracked us up.

Thanks for checking on us... we had to get Braden his own little something to commemorate the occasion... we got him a little bumble bee to snuggle with that has some neat textures for him to explore too. Love to all!
Kodi, Brad, Braden

Lots of UPDATES - ER visit, Balloon Fest, Grandparents visit LA, and Test Results!

Friday Braden was scheduled to have his new mediport flushed for the second time, to ensure it stays unclogged. When the home health nurse tried to access it twice, we had no luck at all. This was very distressing, as this is the piece of equipment that can save Braden's life in the event of another distress episode. So we had to take him to the ER by surgeon's orders, to have them perform a special procedure - but given that Braden's mediport is only 2 months old - it was very odd that we would be having any sort of blockage problems with it this early on. So the ER nurse decided to attempt access & flushing with a different size needle than home health, and praise God... it worked just fine!! This was such an emotional relief. To give you some idea of what this meant for Braden... his mediport is like his pacemaker - it helps make things work right when the body won't or can't, so you can imagine the high anxiety surrounding a supposed problem with it. Once we knew his "pacemaker" (mediport) was working fine, it was a HUGE emotional weight that was lifted... as getting the mediport was a very difficult process when it should have been a quick & easy surgery, and who knows what losing the mediport would mean for what would be in store for us next. But all is OK at the end of the day, and we are SO very grateful!!

This past week has given us some happy memories to share. Nana and Grandpa Wilson flew in from Kansas to spend a few days in the record heat in Louisiana. We tried to beat the heat Saturday midday with a lunch at local seafood mainstay, Ralph & Kakoos - so they could also pick up some of their favorite hot sauce we got them addicted to:-) Saturday evening we took them to their first hot air balloon festival, where they got to enjoy a mass ascension & hot air balloon race, paratroopers, balloon glow, special forces sparkler paratroopers, and fireworks with Braden. The Heckert family (Doris, Jonathan, and Jackson) met up with us for the later evening festivities.

After church on Sunday, we decided to check out the champagne & jazz brunch at the local downtown casino - it was excellent! We decided to give them a real Louisiana experience by doing a small scale shrimp boil - complete with andouille and corn on the cob.

Daddy stayed home Monday with grandpa to put guttering on the back of the house, and we broke in Braden's new stroller with an evening walk in the neighborhood. (Braden's new birthday stroller only lasted about 90 days - I guess they just aren't made to handle Braden's 50 lbs of medical equipment too!!). After an introduction to Emeril's crawfish pasta, a calorie-burning outing was well in order, even though it was still in the mid nineties at 8 pm:-)

Tuesday evening we decided to have a cook-out, which turned out to be a good thing, because we had a major storm blow-in and wreak havoc for about 20 minutes before it caused us to lose power, and then blew right on through. Since we were grilling, we didn't have to worry about getting dinner finished - so we all ate by flashlight lamp, and the Wilsons from KS got to see what it's like to be in post-storm mode in LA. We gave up for a while and went to Sonic for something cold to treat ourselves with, while we waited for electricity and AC to be restored. Luckily, it was all back on by the time we returned home. The interesting thing is, while we were reliving memories of hurricanes and storms past - uncle Scotty happened to be in Hawaii trying to avoid hurricane Flossie while on vacation, and WE were the ones to lose power:-)

Wednesday morning we had home-made chocolate cake for breakfast, since we couldn't finish it without electricity the night before - and then we took the grandparents to tour the stadium, shop in the bookstore, and have one last lunch with us before they returned safely to KS.

Lastly, some very WONDERFUL news to share... most of you know we were waiting for some big blood tests to come back on Braden. All of these nerve-racking tests came back negative - PRAISE GOD!!! This means Braden DOES NOT have a diagnosis of Tay-Sachs, Krebbe's, or Goucher disease... we still don't know exactly what syndrome he may have, but we are looking forward to a future muscle biopsy to tell us more, we HOPE. For now, we are settled with him having "Braden Disease"... and coping with his unique issues and the wonderful blessings we have received by having a child with disabilities, even if the disabilities aren't all named at this point:-)

God bless - thanks for checking on us!! Leave a note for Braden's blog scrapbook by leaving a post if you have a moment.

Kodi, Brad, Braden

Saying Good-bye to Grannie Cack

Hello friends -
This post is on a sad note, as Kodi's grandmother passed away last Friday, and she travelled home to be with her family during this difficult time. Braden stayed home with daddy, while mommy tended to the family back in Kansas. My grandmother, Mary Catherine "Cack" Rinehart, had a fondness for angels, and loved her grandchildren and great-grandchildren immensely. She named Braden's Medical Fund as a memorial fund... I have attached a picture of the two of them this past christmas - you can see where Braden's beautiful blue eyes came from. If you care to see her obituary, here is the link:
http://www.swaimfuneralhome.com/index.cfm

Kodi & sister Shala got food poisoning while home, so Paxton ran through the sprinklers with Gram and kept herself entertained while the two sisters fought over bathrooms and tried to get over the illness while in the comfort of their own mom's home:-) Shala did a hospital stay when she was not getting better, and both of us continue to find a day without tiredness or dizziness.

Daddy did a great job of taking care of Braden while mommy was away - they even cleaned the house! We attached pics from our latest swimming trip - the boys are just adorable, I must say:-) Look how sweet Jackson is with Braden!!

Thanks for the condolences and prayers for family - we will have a more upbeat post later in the week!!

Kodi, Brad, Braden