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)

Headed to KS for Independence Day

We are headed home for the Fourth of July holiday to spend time with our families in Kansas. We are so blessed Nana and Grandpa are bringing us home to vacation, celebrate our wedding anniversary, and watch grandpa go to his NASCAR driving school in Kansas City at the end of the week. We are making a whole family event to watch grandpa drive a real race car. We are flying in June 30th to Wichita, and will fly out of Kansas City on July 8th.

This last weekend we met up with baby Jackson and his momma - we each had a patriotic photo session, and then the mommy papparazzi took our pics together in the stroller. We are buddies, and we are both OK with sharing our space and things together. Jackson is a neat baby with something mommy calls a flirty smile. She makes sure to love on me lots, so I am not jealous at all. In fact, I found it quite interesting to watch mommy hold Jackson while I was chilling out in my stroller. Jackson kept looking at me and then mommy, like he was figuring out we belonged to each other.

Mommy and Daddy are having a good time playing with me lately, as I have started shaking my head back and forth a lot whenever I feel like it, so they like to join in and make it a party. Maybe they can get a video of my 'headbanging' and post it on the internet for next time. I am still trying to sit up more - usually to cough, but I am starting to figure it out and experiment a little outside of that, engaging the ab muscles to peek at something. Maybe some day I will be so inspired to sit up to grab something...

We should have some neat pics to post after vacation - so check back with us soon!
Thanks -
Braden (& mommy & daddy too)

Trip to Houston

We headed to Houston for Father's Day weekend and got to enjoy ourselves and relax a little after some heavy workloads for mommy and daddy at their jobs. The hotel we stayed at had a Mexican soccer team staying there, and fans were lined up outside like they were waiting for a rock star. Then the restaurant we went to had many more players and adoring fans making the place quite hectic. Braden and mommy treated Daddy for Father's Day to dinner at Fogo de Chao. Braden was very good all through the wait and through dinner - our near-table neighbors were quite impressed with Braden's ability to sleep comfortably and soundly in a place that was buzzing like crazy. He took his nap near the wine rack, and seemed to enjoy the sights of the restaurant too, like the glass room where ribs were being smoked.

We saw Braden's neuro guru, Dr. Wilfong. We were able to get some answers to pending questions, but mainly things are status-quo. Braden had not had a seizure since we left the hospital with pnuemonia until this past Friday, but he still has not had more than 6 waking seizures in a day since. The doc says that it is typical for children who have infantile spasms to slowly grow out of them, in spite of all the medications and therapies, and it can be common to see a seizure-free period after a child grows out of them, possibly forever. BUT in our case, that is not likely, and we will probably develop another kind of seizure by the time Braden is school-age, but we could see many years of seizure-free activity. This gives us some hope for his development, as Braden has made some wonderful improvements in this seizure-free period. The doc feels we should start weaning Braden off of his meds, but it will be slowly over time. So for now, we will not increase anything medication-wise, and as he gets bigger this will be a self-weaning process. If we see a longer period of seizure-free activity, we will look at doing a 23-hour EEG study to determine Braden's true seizure status and potentially stopping medications... but who knows when or if that day may come.

While Braden's last EEG done in the hospital a few weeks ago showed significant improvement over previous EEG's, Dr. Wilfong says that this is to be expected, and that's why EEG's and MRI's are often repeated as a child grows.

While we suspected that Braden's "blue episodes" might be autonomic seizures, Dr. Wilfong explained that we can probably rule that out as a possibility, as stimulation seems to bring Braden out of the episode. Since a seizure is something that cannot be stopped, regardless of intervention, it is therefore probably not a seizure. Furthermore, those kinds of seizures occur in children with a different and unexplainable kind of seizure activity, whereas we know ours is related specifically to the brain injury.

We are so blessed to be a patient of Dr. Wilfong's, and barring any change in Braden's seizure status, we will not see him again until early December. We feel that we are in the hands of the most capable medical team possible regarding Braden's seizures, and although it is expensive and inconvenient, we feel that our trips to Houston are worth the efforts. He says that until Braden is about 3, there is nothing additional other than our current plan to add speech therapy, that the best thing Braden can have right now is two parents who shower him with love, expressing that love with touching and kissing and holding him, and continue to provide our little man with the therapies we currently provide.

For now, we are battling another case of the green - so I am sure this will be a continual environmental challenge the rest of the year. Pray that our medical team finds a solution for him that will keep him healthy for longer periods of time... we could use the rest, you know?

Thanks for your continued support & prayers.
Kodi, Brad, & Braden

My new friend Jackson

Last weekend Braden got to meet a special friend - baby Jackson. Jackson has a condition called arthrogryposis - his arms and legs have contractures. Jackson is a sweet and precious little baby who thought it was pretty neat to be around a baby bigger than he is. Braden seemed to enjoy little Jackson and shared his blanket while they napped together. The mommies sat them up to enjoy each other, and they seemed pretty enamored with one another. Mom & Dad (Doris & Jonathan) enjoyed a nice evening cook-out with us. It was nice to spend some time with a family in a situation similar to ours, who has a social schedule like us too - you know, we pretty much stay at home:-)

Braden is still working on tooth #5, he is pretty fussy at times because of it. On a good note, he is holding his head more mid-line and trying to pick it up more every day. While it may be coincidental, Uncle Scott & his girlfriend Patty got Braden a salt ionizer lamp for his birthday, which we put up as soon as we got home from his hospital stay, and we think it is part of the reason we have seen such great improvement in Braden's development, but we don't know for sure. We can't wait to see what our little man has in store for us next!

Surgery Successful

Although Braden was fighting the gooey green monster bug starting this last Friday, we were scheduled Monday for Braden's mediport surgery. His white cell count was pretty high at 25,000 on Friday, but after 3 days of antibiotic shots, by Monday he was "cleared" for surgery, as his counts came back the lowest we have ever seen them, at a mere 8,600!!

The mediport is semi-permanent vein access for shots, IV's, or any time blood needs to be taken. We almost lost Braden a few weeks ago, as the lack of vein access nearly proved fatal for him, so this surgery is one that we really wanted to have done, and had already been discussing with our medical team for some time now. Braden is such a tough 'stick', they couldn't even get access to do the surgery itself! So what is normally a 15 min surgery became an hour, as they took extra special care to ensure there were no problems, and they ended up using the medi-port once it was in to give him fluids in post-op.

Braden gave them a little trouble coming out of anesthesia, but it was a successful day overall. The port sticks up from the skin like a little tumor looking thing, or like he has been working out hard on his pecs on the one side:-) He doesn't seem to mind it, or be bothered much by the incision either... his big fussiness these days are from the fifth tooth that still hasn't broken in. We think that will be the last in this group.

FOR SOME UPLIFTING NEWS... Braden has not had a seizure since we left the hospital from our strep B & pneumonia a few weeks ago, and we have seen some incredible changes and progress in him. He is now turning his head at his own will and even holding it mid-line more, and even trying to lift it up!! He can bear weight on his legs for 15 minutes at a time, and seems to really enjoy that. He is taking fewer naps these days too - probably due mostly to the large decrease in seizure activity. We are just savoring and soaking in every moment with him now, as we see more interaction and "play" (or at least tolerance for it) with him.

We hope to get Braden together with another special baby this weekend named Jackson. If so, we will post pics for you to enjoy. Thanks for checking in on us!

Kodi, Brad, & Braden

Memorial Weekend

We played it safe and decided to spend some family "down time" at home post-hospital stay. We got Braden a baby pool - it's a frog, of course. He seems adverse to the initial introduction of the "new sensation"... but after he got used to it, he seemed to adjust very well and even enjoy it. I think the initial feeling of floating is a little scary for him at first, but then he seems to enjoy the freedom of floating and letting his legs relax in the water. Mommy splashed around with him a good bit, and even dared to "dunk" the little guy. He kept his mouth wide open of course, so mommy had to give him some good back pats to get him to spit out the water. Daddy thought it was mean - but Mommy said we won't know how he will react or be able to teach him if we never do it. I think we'll wait another year before trying that one again, though.

Daddy spent time teaching Braden how to float on his back and playing with him like he was a little boat in th water - it was lots of fun for both.

Thanks for all your recent prayers and notes of support. We are just reveling in every moment we are blessed to have Braden in our lives, and we thank you for being a part of that. We hope you enjoy the pics!

Love -
K, B & B

We are home

We want to thank everyone who has lifted us up in prayer. After discussing Braden's quick recovery and resiliance with his intensivist and nurses - they shared with us that when we brought him in last Friday, that his outlook was not good and they were not sure if Braden would make it. The whole staff at OLOL is amazed that Braden came off life support so quickly, and seemed to rebound with such ease, considering all that the little guy went through just on day one!

We thank God for every day He allows us to watch over the little angel He has sent to us. We know that Braden does not belong to us, and God has appointed us as his earthly guardians, and we feel so very blessed and thankful for that!! Braden has a truly awesome fighting spirit, and I have already learned so much from him. Now at home he is feeling a lot better, and is actually awake several hours throughout the day, as he explores all of his world by contantly looking all around. He is so beautiful - we think he looks like a little cherub!!

Daddy is trying to teach Braden how to relax... hence the photo:-)

We follow-up with the pediatrician this coming Friday, and the surgeon the following week... we have decided that given Braden's rough medical history of trying to get IV access, we will be putting in a medi-port later this summer. We have weighed the risks, and feel the benefits far outweigh them given his situation. We will keep you posted on that schedule, so we can ask for extra prayers, as it will be an overnight procedure and stay.

Thanks a million for your prayers - who knows where we would be without them.

Love to everyone!!

Kodi, Brad, & Braden

Leaving the hospital sometime soon...

Well, we have been moved to the floor, and that's always a sign that you are closer to going home, as you don't need as much constant attention. The downside is that you don't get any breaks, as a guardian must be with the child 24-7, so it wears on you just as much as being in the ICU. The ICU stress is more emotional, and the floor stress is more physical.

Braden has made a quick recovery considering he was on life-support nearly three days ago. He has amazed everyone here with his resiliance and fighting spirit. When the doctors and nurses tell you how worried about him they were his first day here - you know that your child was not in a good place, and God has blessed the hands of those who care for him to find solutions that Braden would respond to.

Here is a picture of him in his room on the floor, resting comforably with "Tiggie" at his side as always. You can't see his glow-worm, but she is in the bed with him too - he just loves how the face lights up and it sings to him - he seems fascinated every time.

Thanks for the prayers and support - we appreciate you taking the time to leave notes on the blog for us. It really does lift our spirits to know that so many people out there are pulling for Braden and for all of us.

Kodi, Brad, Braden