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

Swimming with Jackson

This past weekend we went swimming with Jackson while daddy was at a conference. Braden really didn't protest getting in the water this time, in fact, you will see how relaxed he is in the pictures!! Mommy was teaching him to float - and he can do it all by himself when Mommy holds his head!! I just couldn't believe how relaxed he was in letting me pull him around like that!!!

As you can see, Jackson was really enjoying the water too - he is such a cutie and a ham. He even protested with fervor when it was time to get out of the pool:-)

We are busy getting qualified for additional therapy that will be provided at no cost to us, and they will do therapy at Braden's daycare too... that should all be set up for late August. We are looking into adding aquatherapy to Braden's routine in the fall as well. We are looking into adaptive equipment, and what insurance will pay for and won't, so Braden can have a fully supportive chair to sit in during parts of the day, as he is showing early signs of scoliosis...

Enjoy the swimming pics!
Kodi, Brad, & Baby Bee

The Bumblebee

My friend Doris called me from her convention, this was a quote the keynote speaker shared with the crowd of parents of children with arthogryposis... proof that their children can overcome what science says they can't do. Of course she knew how much it would mean to us, as we have referred to our little Braden as Baby Bee for quite some time.

Please continue to keep us in your prayers as we wait for test results to come back - it is always difficult and an anxious time when waiting for test results. We continue to pray that God will lead our medical team to answers for a diagnosis with a positive outlook.

Kodi, Brad, & Baby Bee

Greensburg Pics, as promised

As promised, here are some pictures from the tornado damage done in Greensburg, KS. What stuck me the most is how every tree in it's path was ripped down to it's bare trunk, and no tree stands more than 15 feet tall.


Someone with a sense of humor has posted their land "For Sale".



The Dillons was the only grocery store in the town, and you can see that the entire left side of the store is gone.

This is the INSIDE of a local parts store, you can see the counter, the poles where the outside walls and windows were, as well as the staircase inside the store.

This building managed to keep it's roof in tact, one of the only ones in the whole area to manage that.


These buildings are now the local hospital. They remind me very much of the MASH units we used to see on TV.


I thought this was one of the most interesting pictures I took... the foundation still stands, and a few glass bricks from the front room window remain. This house also managed to keep most of it's green carpet on the stairs.

Braden is doing well... but please keep us in your prayers as they continue to run tests on him to find a diagnosis, and not all of the outcomes would mean good news. We pray that God continues to give us the strength to love and care for our little man every day we are blessed to care for him.

Thanks for visiting,
KBB

Kansas Vacation

We are back from our Kansas trip with lots of fun memories to share.

We took two plane rides to Wichita, and Nana picked us up from the airport. Once again I was much loved by the plane crew, as I am a great example of how well babies like me can travel - I only cried for about half a minute when I was making a diaper on the second trip:-) I was so happy to see my Nana, and of course, she had plenty of lovin' to do on me. Nana took mommy to see the Wichita Theater production of "Cats"... but neither one of them could really tell me what it was about.

I stayed with Nana and Grandpa and Uncle Brent most of the week - I have my own room upstairs, mommy and daddy next to me, and a bathroom - so it's like having our own little suite:-) I got to know all the doggies pretty well, Dixie like to lick my feet, Diego likes to sniff and lick them when I am in the swing, and Domino mostly leaves me be. Uncle Scott and 'aunt' Patty also introduced me to their new puppy "Shocker"... she is so cute, and rambunctious in a fun way.

Mommy's Best Friend Nicole and her husband Rob took mommy and daddy out for dinner on their anniversary. They must have enjoyed themselves, they were gone over 3 hours while Nana and grandpa babysat. Then daddy surprised mommy with her presents... a hair color appointment the next day, and that night, a hotel stay!! Mommy was anxious to leave me for the first time overnight, but Nana was a wonderful keeper - she slept upstairs with me, and sent mommy and daddy a pic of me once I was in bed, so they would know I was just fine. Daddy had more surprises in store - flowers and chilled champagne once they got to the hotel. Mommy tried holding back the tears, and they enjoyed a romantic evening to celebrate seven years of marriage together, and reflect on the day they chose to start a family. They got to sleep in the next morning, which was a nice break from the schedule I try to keep them on:-)

Mommy went with Aunt Shala to pick up cousin Paxton on Tuesday, so they drove through the tornado-ravaged town of Greensburg, KS, and mommy will be sharing pictures from the town where she had high school friends, pageant sponsors, and family friends.

The next few days were spent enjoying time with my family... cousin Paxton and aunt Shala came over to see me most days, and Gram came from Ashland to see me on Independence Day. I got to spend some quality time with them, and cousin Paxton kept us all busy. She took aunt Shala, mommy, and Gram outside to eat watermelon, blow bubbles, and run around the yard with my little piano - which provided Paxton with running, skipping, and "extra-sizing" music:-) I got to spend good times with uncle Brent, uncle Scott, and future 'aunt' Patty. Scott now works with uncle Brent at Coca-Cola, so we all had our picture taken in our 'uniforms'.

Mommy and daddy took me to meet their friend's new baby Ethan, whose parents Heather and Chris live in Derby. Due to all the rain in KS, they were having some house issues fixed. Then their friends Aaron & Stacey treated us to a nice evening and dinner at their house in Andover... I think they like me just a little bit, and are talking about maybe having some babies of their own in the coming years - yeah... maybe soon I will have some new friends to play with on my next visits!!

Our last day in Wichita, nana took us swimming at the YMCA, and man did I take to the water... at first I was resistant to the changing sensation, but once I figured out I was in the water, and I would float, I got really relaxed. Mommy and daddy took me to the deep end to float in my new pool lounger, and then enjoyed some time in the bouncy swings. mommy took me to the spray fountains, and I really enjoyed that too - except the one that was chilly, and it made me curl up like a little pill bug against mommy to be 'protected' from the cold water. All that swimming tuckered me out, but really made me quite relaxed.

Cousin Paxton and Aunt Shala came over our last night in Wichita for dinner, and mommy played a lot with Paxton. She almost made mommy cry when she was saying her good-bye's she started crying that we would not see her for awhile - but then Aunt Shala showed her how to speed dial mommy on the cell phone, so she could talk to her any time she wants. She left us messages and called us almost every day since!

Saturday grandpa and nana rented us a spacious mini-van to drive to Kansas City. Grandpa got to use his christmas gift from nana - a NASCAR experience at the Jeff Gordon (grandpa's favorite) Driving School. Grandpa got to drive his own car at the track, and he even got to PASS another driver too - it was so cool!! Grandpa's whole family showed up to watch, and aunt Jenny and Uncle Brian flew in from Colorado and brought Jenny's sister Liz with them to watch too!

Saturday afternoon we drove up to St. Joe, MO to see nana's family - and got to see all my great-aunts and uncles, and my great-grandparents too. I even got to see great-aunt Jeannie and Jerry in MO, which was new, as we usually visit them in Pensacola, so it was neat that we could all be together. That evening we drove back to Kansas City to stay with great-aunt Robin and great-uncle Jeff... and what a nice set-up we had there too... again, I had my own room, mommy and daddy next door with a bathroom right there. Second cousin Jason was home from school, so we got to have dinner with him, and with great-grandma Lavon and great-grandpa Stan too. Of course, Brian and Jenny and Liz were there too, until we could hardly keep our eyes open anymore, and aunt Jenny kept sneaking in more turns to say "good-night" to me:-)

Sunday was a long travel day home from Kansas City, as we got bumped 3 flights in Houston, and the handlers misplaced our luggage for a few hours, but it was nice to be home again in my own room. We had such a nice time, and were so blessed by everyone we got to see while we were home. Thanks for checking in with us!

Hope you enjoy the pics!!
Braden (Kodi & Brad)