Wednesday, December 13, 2006

Our trip to holland - Tulips are my new favorite flower

Braden is still trying to get over this bronchitis-like episode, along with mommy & daddy. The good news is that he is now able to clear stuff out of his mouth on his own, and after two consecutive weeks of checks, he has no pnuemonia - what a fighter we have!

I am going to share a little story with you called "Welcome to Holland", written by a special needs mom, Emily Perl Kingsley 1987. I thought this illustrated what I have struggled at times to convey myself, about what it is to be a parent of a special needs child.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags
and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.“

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.“ But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.“

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The first picture on here is of Braden and his handprint ornament, that another special needs mom, Stacie - a friend of ours, made for Braden. A precious keepsake we will treasure. As we embark on our trip home for the holidays, we will probably take a small break from our blogging, unless there is any major news to note. We hope that your families will receive many blessings this holiday season, and that you will experience lots of joy. With love from our family to yours - Merry Christmas!

Kodi, Brad, & Braden

Friday, December 08, 2006

12-7-06 update

Braden and parents upon returning from our glorious trip, caught the bug. While mommy & daddy are recovering mostly, poor little guy has a cough that is sticking with him. He is on a regimen of augmenten, so we hope this will knock it out.

We have some good news to share about his head growth. In past postings I have shared with you, that slow head growth is not good, because the brain needs to grow. In the early stages of regular doctor visits once we finally got to go home from the NICU... Braden was only charting on the growth scale in the FOURTH percentile, way below his peers, and didn't even come close to approaching the range of normal. This week when we went to see our local nuero, we got some exciting news that gives us hope (God just seems to know when we need that little glimmer to pick our spirits up)... Braden actually fits INSIDE a pattern that puts him near the 25th percentile!!! God continues to bless us with his unending love - THANK YOU!!!!

We are preparing to fly home again for Christmas. After a wonderful experience with Continental over THanksgiving, we decided to save Braden four travel days of living in a carseat just to get to KS & back (not even counting driving around in KS to see family). We will only have to spend two half days travelling to & from, rather than TWO two-day trips just to reach our destination. Brad's brother has graciously offered us his Yukon so we can travel to Western KS to see my family, so they can all meet Braden. We are so thankful, and excited!

We will probably not have anything to post until we get to KS and it's near Christmas, but we want to thank you for your postings and prayers. Thanks for stopping by.

Kodi, Brad, Baby Bee

Wednesday, November 29, 2006

Thanksgiving trip

Braden took another airplane trip, but this time he got to be awake for it, and it wasn't a plane just for him:-) He did very well on his flights... since he does not swallow well, we worried about his ears popping, but eventually he would yawn a few times after fussing for a few minutes. But he never cried. He traveled better than mommy, who still struggles with motion sickness.

It was a WONDERFUL trip, as we got to spend some quality time with friends and family, and the baptism renewal was a feel-good celebration. It was nice for the family to get to meet the little man, and most of them just gushed over our sweet little man. Braden got to meet Aunt Shala and his uncles Brent & Scott this trip, as weel as most of his great and great-great grandparents this trip, and those he didn't get to meet, he will see over the Christmas break.

It was a whirlwind trip, and we know that many of you sent our little guy with some gifts, but we had to leave them behind for us to open for him at Christmas time... so your thank-you's will come late. In the meantime, we would like to thank everyone who traveled to come spend the time with us to celebrate. We also want to thank those who made some sacrifices on our behalf, so that we could share in this celebration of life... the Baus family who made it possible for us to get plane tickets home, the Crawshaws who picked us up and let us borrow their van for the duration of the trip, AND baked many treats for us to enjoy, and the Hennen's who graciously lent us a carseat for Braden while we were home.

It was so nice to see everyone, and we can't wait to see you all at Christmas!
Kodi, Brad, Braden

Monday, November 13, 2006

A little inspiration from the FROGS

These pics are from Braden's first LSU tailgate this weekend, he did great! The purple hat was borrowed from our night-time sitter Eva, and Braden just had to have his own, so we got him the baby one that says "Geaux Tigers", as it was chilly Saturday!

Now for the inspiration...
My grandfather, who first told me about frogs being good luck, passed away a few months before my neice, Paxton was born. When she came into this world, she had two little moles on her, and her mommy told her that they were "grandpa kisses". To let her know that even though he wasn't with us in the body anymore, he would be watching us and here with us in spirit.

When we were sent to TCH shortly after my run-in with the tree frog that I was expecting to bring us good luck... Braden received all kinds of little froggies for his crib, his room, and people started sending me frog cards and cartoons they found in those following weeks. Once the frogs surrounded Braden in the hospital crib, when we came home, he ended up with a new little mole on his tummy that wasn't there before.

It took me a bit to put together that those frogs had invited Grandpa Rinehart to give his "kiss" to our brave little boy. I know that the angels in heaven are watching over Braden, and I even had a dream about a very large angel that sits on top of the end of his crib watching over him. I know that God is with us on our journey, hard as it may be at times.

I hope that sharing this story will allow you to open your heart to hear God speak to you as well... He is out there, watching over us, just waiting for you to talk to Him. Allow God to speak to you, I promise the reward is bountiful.

Thanks for checking in on us, we will let you know how the botox is working later this week. For now, I can tell you that his seizures (for the time being, at least) have decreased significantly. WHile the doctor didn't think this would be the medicine Braden needed, once again, he is writing his own book, and taking us along for the wild ride.

Kodi, Brad, & Braden

Wednesday, November 08, 2006

Trip to Houston

A supposed quasi-relaxing trip was anything BUT… except for Sunday night when we got there. We left Sun morning and had a pretty easy drive there. We had planned to meet up someone for lunch, which fell through, since we actually got there at about 2:30pm, and we had planned to go meet up with somebody else Sunday night, but she never called. We enough to do, as we had ANTS, ANTS, ANTS crawling all over in our first suite, so we ended up moving… only after we were totally unpacked, of course, and right when it decided to pour down rain! Yeah – not my idea of a “relaxing” Sunday afternoon:-) So we went to use a gift certificate our friend Victoria had sent us for dinner at a local cajun place called Pappadeaux, and Braden was a pistol the whole evening crying and thrashing about…. Luckily the restaurant was pretty loud, and of course he mellowed out just in time for us to get the check and leave:-)

Monday was a full day, as we were STILL trying to track down a doc to do the botox for B… so we popped in to see our Nuero, to see if their office could help us find someone, as our docs in BR who were trying, kept coming up empty. So we strolled around seeing some nurses who were a part of our care team, had lunch at our little hospital a few blocks away, and watched X-Men 3 to pass the time until our 2:15 appt with the nuero. We only saw the nurse this visit, and while Brad was a little miffed, I didn't think it was not that important to see him face to face (THIS TIME), as we are comfortable with the plan and path we have chosen to take… if we weren't, we would have demanded he come see us personally since we drove all that way – but we were OK with it. We were so grateful about the time he first spent with us explaining our situation more in-depth and what our future could look like, we hope he was spending his time with another family who was there looking for answers like we were the first time. So our great nurse hooked us up with some free samples of drugs (woo-hoo!!), and we are on another course for our meds, since they don’t seem to be working completely like the Topimax did. So we are aggressively seeking to see if what we are on will work or not, and are increasing the Keppra dosage over the next 10 days, and if no results are seen, we will take him off and try something else. There are about 3 more for us to try still.

As for the ketogenic diet, Brad & I have decided it is something we want to keep in our “arsenal”, and look at implementing after the first of the year, should we find no help from the medicines. We are wanting to wait, b/c if we find the right medicine potion, we may not need too. Being on the diet is fine with us, it just means a week of hospitalization to start, and weekly blood draws here in BR to monitor various levels of glucose & such. Secondly, if we start the diet and change meds at the same time, and we DO see a difference, we will never know if it was the diet or the drugs… and we don’t want to keep him on anything that is not necessary.

So we are walking down the elevators, when a BR doc calls to say they have an appointment for us with an ENT at 4:30 who can do the botox, and can we make it? We were 3 blocks away, so we made it. Unfortunately, this doctor is OUT OF NETWORK for our insurance… so the visit alone cost us about $250. He got us in for the procedure yesterday morning at 7:30am. Luckily, it was performed at Texas Children’s, which is IN network for us, so hopefully we won’t be getting any big bills for the actual procedure. Braden is the YOUNGEST PATIENT this doctor has ever done Botox on to the salivary glands… so I believe this doctor (who made several Consumer Reports and Parenting Magazine’s TOP DOCS lists…) took on our case, as it may be “one for the books”… pioneering infant botox to the salivary glands, IF it works. So while it may have a few risks, the benefits should outweigh them. PLUS, b/c Braden is so small, they err on the side of caution. We were supposed to have FOUR gland injections, but we had THREE, because they just couldn’t get a good mark on the fourth salivary gland, (measuring at only 3 mm), and rather than risk missing, they stopped with the three. The important thing is that they got the two underneath his jaw/chin, which are the ones that we needed to get the most to reduce secretions. If they missed, Braden could have paralyzation of the face muscles for about 3 months, but so far, he is looking good. He is SUCH A TROOPER!! They had to numb the area first, b/c they had to use a bigger needle to actually inject the meds, so he was poked about six times yesterday… poor baby. He was actually pretty good about it, and more mad about not being fed than anything.

So although we were up at 5 am, and mommy and daddy each only got about 3 hours b/c of his machine going off… we are hopeful that this will provide us with the results we are looking for. He can’t help it, he could sleep all night, and he does pretty good actually, it’s the O2 sats dropping that make us get up to suction him… not his fault. He could sleep thought the whole thing if we could find a way to suction him in his sleep! So he was tuckered out after all that and we hit the road… but he gave us a little scare on the ride home. He had one of his “episodes”, and the Atavan didn’t seem to be working, so we were on the phone with our docs in BR at a gas station in Iowa, LA trying to figure out what the next step is. At the 30 min mark post-dosing, his heart rate was still very high, but we saw a slight and steady decrease… so we decided to drive another 40 min. down the road, and dose him again if we saw no improvement. Luckily, we did, and emergency was avoided. What a ride!

I will be making another post around the weekend, as I have much more news to share... more about our journey of faith with all that we deal with, and I hope you check back in for a little inspiration that God's plan is leading our lives.

Thanks for your love, support, and prayers - always needed, always appreciated. Love to all of you, may you be blessed!!

The Wilson Family

Wednesday, November 01, 2006

Baby BOO

Our own Baby Bee became a bumble bee for Halloween. The suit was warm, so he was quite cozy and ready for a nap in it:-)

Our adventures continue as we still haven't found the right medicine potion to get his seizures more under control... we are giving that until the first of the year before we get him on the ketogenic diet. We want his meds in line first, so we don't continue to give him medicines he doesn't need.

We are off to Houston this Sunday - Tuesday... we will be seeing our lead nuerologist, and hopefully getting botox done while we are there. We are going ahead with the procedure, and our local doctors are trying to find a good doc in Houston to do the procedure.

As soon as Braden is big enough, he will be fitted with a trunk vest - that looks like a lifevest that attaches to a vacuum cleaner box. It helps clear out the pulminary areas, like a cough assist, using harmonic frequencies and 'pats'... we will have more on that as time gets closer. STill don't have the hand braces in yet, so no pics to share there yet.

We will let you know how our trip goes, we hope to get in with the dietician while we are there as well. We will update you after our next Houston trip - hope you are all well!! Thanks for keeping us in your prayers, as Braden's seizures are more frequent, we need them ever still.

The Wilson's

Saturday, October 21, 2006

Oct 20 update - the boss of me

We had a pretty great two weeks... One of these pics is from Mommy's birthday, and we were just hanging out together. The other picture our little man looks like he is ready for business, and like he is the big boss:-) Isn't he precious?

We discovered why not many people in the south had jack-o-lanterns... the humidity in the air spoils them FAST!! I have attached pics of the pumpkins we made two weeks ago - they had to be tossed this week, as they were a big moldy mess. Oh well - next year we will get fake ones:-)

The boys were very generous with mommy, and I had a great birthday with my student staff too who showered me with affection and gifts and food:-) Thanks to my family and friends who sent cards and gifts as well. I got a parallel bible I had been wanting, and I can't wait to use it for my study this week!

Braden's seizures are holding steady at about 20 or less a day, but he did have another extended episode that was a seizure of another kind. So this week we will discuss with our local nuero about the next step... ketogenic diet, botox, new meds, stopping some meds, etc.

Our hand braces are not in yet, so we don't have any pics to share there. The good news is that he is still making some GREAT progress with his head control, he is using his abdominal muscles more, and the sitter said he almost rolled all the way over until his own arm got in the way. He has been making progress on the rolling, and he has been able to do that for some time, it is his arm strength and usage we still need work on. Since our stay at TX Children's Hospital, he hasn't played with his hands much like he did before... so we will keep working on progress. He is also dropping his shoulders a little more too - not relying so much on his shoulders to support his head, so that is great news too.

We have only had a few scary moments with Braden lately, but mommy and daddy are learning to handle the situations as they come along. God has blessed us with strength and courage and the wisdom to handle everything that comes our way, SO FAR. Thanks for keeping us lifted in your prayers, we could not do this without all of you supporting us.

Wednesday, October 11, 2006

A quick trip to the ER and more results from this week

The past two weeks had been without incident, until Braden starting missing the "white coats" again. He was more congested and 'juicy' than normal, so Brad and I decided to take him to the clinic this past Saturday to have him checked out. We wanted to be sure he did not have another pnuemonia, as we had a couple fever spikes and accelerated and deep breathing episodes starting early Friday morning at about 3:30 am, and again at 5:30 pm.

At the clinic, we saw the doctor on call, and nurses who have not dealt with us yet, or seen us in person yet (although they have all been briefed by our doctor many times about our "anomoly" situation). The doctor seemed concerned about possible pnuemonia as well, and the nurse was VERY nervous about his breathing habits (however, I must tell you that he was NOT in any kind of bad shape like before when we took him in, resulting in a hospital stay). The doc decided it was best to send us over to the hospital, and tried to get us directly admitted into the PICU, however the admitting doctor (one of our specialists, the pulminologist), was busy with a critical patient and had us get checked out in the ER first. The nurses said they couldn't believe how calm we were, and that we would be comfortable enough with the situation to drive the 8 blocks to get to the hospital, as opposed to calling an ambulance. Yes, WE had to calm down the doctors and nurses at the clinic.

So while our intentions were to avoid going to the hospital ER, that was not in the cards for us. Luckily teh doc we saw there, admitted us last time, so he was familiar with our case (which always helps - A LOT in our case!). He did chest X-rays and did blood gases and chemistries. While we waited, Daddy fed the baby, and of course - he calmed down and showed numbers better than he had in an entire three day period!! It was then that they decided to get us admitted to the floor, instead of the PICU. Brad and I have discussed that at this point, we are just no longer "floor" people. Not meant in any kind of 'elitist' way, just that it's harder to get what we need when we need it on the floor without 1 on 1 or 1 on 2 nursing, like the PICU provides and we have at home. We have everything we need at home, and it's more of an inconvenience to be on the floor where we can't access everything like we can at home or in the PICU in a timely fashion.

So we called the ER doc in and conferred with him about our results. While our chest X-ray showed no pnuemonia, we wanted to know the other results, as the last time our chest X-ray just showed bronchiolitis, it was actually pnuemonia. So we inquired about our white blood cell count, and it confirmed that he was not under any extra stress or fighting infection, as it came back at 11,000 - within our normal range. After discussing our wish to be sent home, the ER doc, our specialist, and the nurses felt comfortable sending us home since we were most comfortable with that decision, and they are aware of our experience with the baby so far, and know that if anything were to change we would come back. So for the first time in some of our nurse's careers (as they shared with us), an ER admit to the PICU was actually sent HOME! We got to go home, and Braden has been fine since!

Tuesday we have a salivagram done to see where Braden's secretions are going. We needed to know if they are going into the lungs or into the esophagus, and eventually into the stomach. We are having this test done to see if we are a good candidate for BOTOX, where they would paralyze two of his salivary glands to help him improve upon his oral motor skills, learn to handle his own secretions again post-seizure activity, and hopefully help keep him from future pnuemonias. The salivagram confirmed that part of Braden's secretions are going into the lungs, but that part of it is also making it to the stomach. So all this tell us NOW, is that we ARE a candidate for botox, and we will have to get that scheduled. The questions we still don't have answered, are: Is this happening due to some physical malformation? Is this happening because his muscles in that area are not developed enough? Is this something he can grow out of, or work on to get better? Is there a surgery to fix a physical deformity if there is one? And lastly, or is this just a nuerological issue? Those are questions we will need answered, before we ever start considering a tracheostomy for Braden. God has yet to put it on my heart that the trach is the path for Braden, like he has done for everything else that has come our way. So I will continue to pray for guidance in regards to this issue, and hope that God will lead us to the right path for our son.

We did get some good news in physical therapy this week. Braden is holding his head up off his chest enough when we try to sit him up, that we are starting to work with him there... kind of speeding up our therapy a little bit, as he would normally be scheduled to keep working on rolling. He was able to show our therapist that he is starting to roll on his own, and she was happy to see that progress - so are we! THANK YOU GOD FOR YOUR SMALL BLESSINGS WHEN WE NEED A SIGN THAT YOU ARE LISTENING TO OUR PRAYERS. We and the sitter continue to work with Braden towards improvement in this area - it's working!!

We (and by that I mean, ME) carved pumpkins this last weekend while Braden napped and Daddy cut the yard. We tried doing some fun photos with the little guy, but as you can see, he just wasn't "into it" much at all, and still interested in napping. Oh well. We finished the weekend with a cook-out, and mommy introducing Braden to his future Power Wheels toys - he seemed to enjoy them.

Have a great week everyone, and thanks for checking in on us! We will update you next week, as our hand braces should be here, and we should know if we will be checking into TCH (Texas Children's Hospital) for an extended stay to get Braden on the ketogenic diet or not, based on conversations with our local nuero. Pray that God will lead us down the right path for our little man - thank you!

The Wilson's

Thursday, October 05, 2006

Oct 4, 06 update

We kind of had our first "regular", dare I say boring for us? week. We worked all the days we were supposed to, the sitter came every day she was supposed to, and we didn't have to go to the hospital. We went to therapy this week, had home nursing come, and seen our pulmanologist. Our visit with the pulminologist went well, as we got to address that Braden is still not handling his secretions well. Dr Thomas suggests we do a saliva study (similar to a swallow study) to see where they are going... are they going down the esophagus or ending up in the lungs? If we are seeing any end up in the lungs, then we will move ahead on having botox (no fair). They will inject two of Braden's salivary glands, which essentially paralyzes them for about 3 months, and has no side affects like the medication we are on. If we decide to do this, we will do it when we are hospitalized to start the ketogenic diet.

Depending on how we do on Kepra, the nuero will want us to arrange for a stay in Houston, so Braden can start the ketogenic diet, and we can have the other procedure done while we are there. His seizures are slowly decreasing from 100 a day (still better than the 200 a day we had early on!!)... down to less than 50 or 60 a day now. Since we were having less than 10 a day on topimax, we are hoping our new "potion" of meds will get us to that same level.

Braden is slowly working back up to his physical development, where we were before the extended hospital stay - we are almost there. He is really good at tracking faces, but he still can't hold his head midline on his own, he can't hold it up for extended periods, and he still has not started smiling again since the seizures came on. We were fitted for little hand braces to wear a few hours a day, to help him open up his hands more, and help him not use his stress-response of turning his hands and arms inward when he is upset.

On a good note - he is more relaxed overall now and sleeps with his hands open most days. Our boy is ALMOST 16 pounds, and just blew through his 3 - 6 month stuff without even getting to wear some of it. He is also now 24 inches long. BIG BOY.

We will post an update when we know if we will be sent to Houston to check in, or if we will just be going for a check-up. Thanks for checking in on us,
Kodi, Brad, and Braden

Thursday, September 28, 2006

Updates & Promised Pics

I am showing off some of our fun pics here from our trip. Braden needed a swim diaper, so I fashioned one out of a Wal-Mart bag & medical tape, so as not to ruin Jeannie & Jerry's lovely pool. Some more fun beach photos... hope you enjoy.

He got his 4-month shots today (so we will play catch up, since he turned 5 months on Monday). We are having him checked for viruses with samples we will drop off later, and we will begin Kepra again to battle our current type of seizure activity. We are still having about 100 a day. He is really a trooper and a lovely spirit.

We hope you all have a wonderful weekend!
Kodi, Brad, Baby Bee

Monday, September 25, 2006

More Firsts

As pressures have been mounting, and mommy was near homicidal from all the stress - she and Braden went with Daddy to his pool conference in Pensacola. Mommy took medical mental leave, and tried to get away from the 90-to-nothing life we have been living for some long overdue R&R. It was a very nice trip for us, we stayed with Aunt Jeannie & Uncle Jerry - the most gracious hosts, ever! While Brad got certified, mommy got some work stuff done, and also enjoyed some down time reading for enjoyment. Mommy and Daddy got to have DATE NIGHT, while the relatives watched Baby Braden. On the weekend, we took Braden to the beach - he got to experience the ocean for the first time! While he was fussy while in the carrier, after he got to feel the ocean and sand, he was quite relaxed just laying in the shade!! The breeze was wonderfully cool, and it wasn't a very warm day - so our time was just really enjoyable. Braden's numbers were practically AMAZING, as he had oxygen saturation at 100%, when he normally ranges 97 - 99, and his normal heart rate of 125 - 140 was at a low 105!! We wonder if it was all those wonderful negative ions in the air. Braden was completely relaxed laying on the beach!!

We did have a small scare, but at the time we were across the street from a hospital - but mommy figured out how to get him to breathe, clear his airway, and get him calmed down. Braden was not feeling the best on this trip, as he has a little bug or something that has his tummy and digestive system upset, so we were dosing Pedialyte regularly as directed by the pediatrician. We are hoping he will start feeling better now that he is back home.

We get on a regular schedule this week. Mommy & Daddy will both working a 10-hour, 4-day workweek. Mommy will be home on Tuesdays, Daddy will be home on Thursdays, and the nanny Caralyn will be with him on m-w-f. We start up physical and occupational therapy again this week, plus back to see the local neuro doc. Braden's infantile spasms seem to have gone away, but unfortunately have only been 'replaced' by this new kind of seizure. We have not seen much if any reduction in his seizure activity:-( We will probably add kepra back to the regimen, as it is good for the kind of seizures he is having now, and has no side effects - but we will see what the doc says. We are fairly certain that in the near future we will begin the ketogenic diet as well. We will keep you all posted on those things.

We hope you enjoy a few pics from our weekend outing... thanks for coming to check on us. Drop us a note if you get a chance, we love hearing from all of Braden's "Fan Club"! We will be posting some MOST ADORABLE PICTURES of his day at the beach this week - so come back to see us!

Kodi, Brad, Baby Bee

Tuesday, September 19, 2006

Thank you is not enough

How do you begin to express gratitude for the many, many family, friends, acquaintances, and strangers who contributed to the fundraiser for Braden's medical fund? We are completely awestruck and blown away at the levels of generosity so many of you have bestowed upon our family. The fundraiser held at St. Andrews Lutheran Church in Wichita, KS raised an astonishing $13,000 for Braden's medical bills! We are at a loss as to how to express our gratitude... we are truly blessed by all of you, and thank you all so very much. Braden's bills are mounting, and we are only beginning to see them trickle in. We do have good insurance, but not everything is covered, and our weekly routine includes co-pays, medicines, lab work, specialty visits, special dietary needs, medical supplies for all his machines and more - amounting to nearly $500 some months alone, not counting his regular daily care and the nanny, etc. We were starting to feel very overwhelmed in trying to figure out how we would even begin to pay for things like trips to Houston, his very expensive transfer care flight, the impending ketogenic diet supplies, and more.

We are just overwhelmed that God has put so many kind, generous, and compassionate people in our lives, we have never felt more blessed than we do right now. We are excited to announce that a family friend has gotten us tickets to fly home for Thanksgiving, when we will have Braden's baptism renewed in the presence of his family and friends. We truly have SO MUCH to be THANKFUL for!!

We say thank you to those who donated money, those who gave their time in planning and organizing the fundraiser, those who donated prizes for the bingo, those who provided food for the dinner, those who set-up & cleaned up, and those who came to support our family by going to the event. All of you will forever be loved in our hearts, and a special part of our growing "family" God has allowed us to be a part of. We truly appreciate your generosity and support.


With our whole hearts,
Kodi, Brad, and Braden Wilson

Thursday, September 14, 2006

One more day in the hospital - new seizures

Braden has been through a lot, and we are working diligently with the team of doctors to figure out how to best care for him. While this trip was necessary, we are working on a proactive plan, to keep us from living at the hospital!!

We will be sent home with some new medications... one to help reduce the salivary secretions, and therefore his aspirations to the lungs. We are only on a quarter-strength dose, this is good, as it is a medication that can lose effectiveness over time, and at this level, Braden is actually able to "hock a loogie" on his own for the first time, so this is promising. We aim to take him off that medication, once the seizures have been controlled, as his past has proven he CAN handle his own secretions and swallow. The next step in controlling the secretions, if the medication is no longer effective, we can use botox injections into the main salivary glands - that is good for three months at a time, but we will see how it goes.

Unfortunately, Braden has developed a few more kinds of seizures, some of which are prolonged and can cause oxygen desaturation in the blood. We are still giving the zonegran time to build up in his system, as it takes a few weeks to take full effect. It does give him the unfortunate side effect of not being able to sweat, so we have to more closely monitor his body temperature and give doses of tylenol as needed to bring it down. However, a low-grade fever is better than a kidney stone!

We will also go home with atavan, to deliver when Braden has his labored breathing attacks. Should the atavan have to be given a few times, we know that is a sign to take him to the hospital. Our hope is that knowing how we can control his body temp with tylenol and wet rags, and having the atavan to help slow his breathing episodes, we should be able to stay out of the hospital for longer periods of time. At this time, we must concede that some of his issues are simply nuerological in nature, and cannot be treated with medication... we can only treat the symptoms that arise due to the nuerological 'misfires' in the brain.

We continue to love on our little angel... it's like looking into the face of God himself. The nurses always comment about how beautiful he is and how sweet our baby is... we know that God has blessed us with this child, and we pray to learn the lessons he was sent here to teach. Thanks for keeping us in your prayers during this frustrating time for mommy and daddy as we continue to search for the right path.

Kodi, Brad, Baby B

Tuesday, September 12, 2006

OLOL PICU, Long Houston trip update

After much anxiety, Braden was moved to sleep in his own bedroom at home, once we ran out of room near the bassinet for all his machines. Here is a pic of him his first night in his own crib, with all his crib critters cheering him on.

Not much of an update on our stay at OLOL. The sputum culture is growing something, and until we know what it is & what medicines will kill it, we will continue with a very general antibiotic. Braden had another fever spike and respiratory distress episode last night, which eventually got under control with ice packs, a cool rag on the head, and mostly, a dose of atavan to slow his respiratory rate down... he was in la la land not soon after. We continue to monitor his vitals closely, as his fever has shown it can quickly become a concern.


Let me begin this update by saying that we do not have medical degrees, and really have not had time to research our findings from our visit with the specialist, so some things may not be spelled right or completely explained in detail, as our knowledge at this point is still somewhat limited.

There are three indicators of our situation that will foretell our future. These indicators are all a sliding scale within themselves, but they all paint the overall picture. Those indicators are: Epilepsy (what kind of seizures we have, how long they last, age in which they began), Mental Retardation (IQ tests will determine how severe the brain damage is, but the first available opportunity to gage our outlook will be at about age five), and Cerebral Palsy (how delayed our motor skills will be).

Let’s talk about the EPILEPSY first, since that is the one thing we have definite answers on. There are two types of epilepsy (continuous seizures) – one is called symptomatic, and the other is cryptogenic. Typically, he explained that children with cryptogenic epilepsy, often have a better chance of developing closer to “normal”. Cryptogenic epilepsy is a kind that is inexplicable as to why the seizures began in the first place. Symptomatic seizures are the RESULT of (symptom of) a traumatic event to the brain that caused the loss of oxygen. This will mean we have a more difficult outlook on the sliding scale of expectations, but things can change with epilepsy as Braden grows. The damage to his brain, in my own metaphoric manner, is like a cobweb on the brain… kind of spread out, and not in one specific area, like an egg or a knot. This will limit our options in treatment.

There are FOUR ways to treat epilepsy. The first is medication. While there are over 25 medications to treat epilepsy, only about five are designed to treat infantile spasms. While I don’t know what all of them are, we do know that we have been on three of them: ACTH (which did not work for us and was contributing to our high blood pressure), topimax (which caused the kidney stones), and zonegran (which we are now on, and our dosage has been steadily increasing).

The second way to treat epilepsy is brain surgery. Currently, we are not a candidate for surgery, because there is not one specific and concentrated area of the brain that was damaged and is causing the seizures, like I said earlier, it is more like a spiderweb – kind of spread out and generalized. Because it cannot be pinpointed to once specific area or concentration of the brain, we are not a candidate for surgery right now. In the future, his epilepsy can change, and eventually concentrate into one area of the brain, and at that time we could be a candidate, but not for now.

The third way to treat epilepsy, is through a special diet, called a “ketogenic diet”. While we don’t know really anything about it, the doc gave us a book about it. He says that research indicates that when the diet is combined with medication, many types of epilepsy can be kept under control for very long periods of time. This type of diet would replace our current formula. We will only look at this option if when we return for more follow-up in two month’s time, the zonegran is not working, or at such time before that we find his seizures are getting much worse. To get on this diet, requires hospitalization to “kick-start” it, so it isn’t something that can just be quickly decided on and prescribed. Of course we will post more, once we have had a chance to study.

The fourth way to treat epilepsy is to implant a kind of pace-maker for the brain, called a Vagus Nerve Stimulator (VNS). It would be implanted under the left clavicle, and be strung up the neck to control some kind of synaptic response that triggers the seizures. The goal of this pace-maker would be to fire when a seizure-onset is detected, therefore preventing the seizure. I am very vague here, as this will be much further down the road for consideration, and don’t know enough to really say more than I have.

We did get some relieving news about our infantile spasms, as we were further educated by “THE GUY”… they cannot cause any further brain damage. Braden’s future has already been written regarding the damage done, and time will reveal what that is. The infantile spasms (called West Syndrome) unfortunately can also lead to the future development of Lennox-Gastaut syndrome, which is seizure “drop” disorder, causing the afflicted to drop to the floor when having an episode. While these patients will usually have to wear a protective helmet for some time, the combination of diet and medication can prevent these seizure attacks from happening, and can be controlled for a better quality of life, in most cases (I say that, because often we are falling into the opposite of “most cases” – so consider this a disclaimerJ)

Regarding the mental retardation and cerebral palsy… with more education, we learned that being diagnosed with cerebral palsy is simply a confirmation of “developmental delay”, in regards to motor skill development. We shared with you before that there is the possibility Braden may never talk or walk, but again, this is something time will tell more clearly. If he is able to learn to do these things, at what age he learns them, and how far behind he is to his peers will be more telling about the severity of our future. For instance, if he has not learned to walk by the time he is five, chances are, he probably will not learn to do so. Right now, TIME and Braden are the doctor to determine the future. As for the mental retardation outlook, again, this will be told with an IQ test, and markers along the way… at what ages he can talk, walk, hit milestones, draw circles, etc.

While there are still many unanswered questions, at least our “wait and see” is no longer infinite, and by about age five we will have a much better picture of what our future lives will entail. For now, we will be satisfied that we have tried to give him the very best of care by traveling to see such a guru in epilepsy and infantile spasms, and know that God has our plan written as well - we will have to find and pray for the patience to allow Him to teach us the lessons that Braden was sent here to share with all of us. Thanks for traveling this road with us, and allowing us to share our story and journey with you.

Love to all,

Mommy, Daddy, and Baby Bee

Sunday, September 10, 2006

Back in the ER in Baton Rouge 9-10-06

Braden has big hopes to follow in "auntie" Victoria's footsteps, and do something significant with his life, as he dons this "Future Agent" Secret Service onesie, he looks ready for business, almost like a bouncer, don't you think?

This update was supposed to explain to everyone about our trip to Houston, but we have a more current scenario to share. This morning we were admitted into the ER at OLOL again, with respiratory distress, extremely high fever, and potential heat stroke. Before you think we are terrible parents or made some bad choices, you should know that a potential side affect of the new seizure medication we are on, includes heat stroke, hypethermia, irritability, anorexia, and others. Braden is normally a profusive sweater, and he has not been sweating much in the past 3 days, and instead seems to be retaining the heat in his skin, as his face, legs, and arms have been a bright red. He has been very hot to touch, and with the respiratory issues, he has been unresponsive.

They are running the gammet of normal tests, x-rays and blood tests to check for a new pneumonia, and cultures to test for a variety of infections. Early tests have all come back negative, but our white cell count is at 18,000. This is high (normal should be about 10 or 11,000), but not extremely out of the park like before. So they are treating him with some general antibiotics for now, until they understand more of what is going on.

We will try once again to keep you updated as we can, but our hopes are high to only be here for a few days to get over this bump in the road.

We will share our information from our trip to Houston in a few parts, as it is an incredible amount of information, but we feel like it has all been worth it, as we are more educated, informed, and confident in our plan of care. We will do that in another posting this week.

We have found a sitter for Braden, Caralyn will be watching him in our home on MWF, and we will announce some other news regarding our work schedules later this week too, once it has all been approved, but it looks like we won't have to hire an additional care provider for Braden. She trained on Friday and Saturday, and only has a half day of training left before she will watch Braden alone, so while we hoped that would happen tomorrow, we will have to postpone that until Wednesday, IF we get to be home by then.

Friends, we thank you for the amazing support and prayers, we know that God has listened to all of your prayers, as we have witnessed His wonderous ways as Braden continues to amaze us with his ability to heal. We ask for continued prayer, as this first year of his life, we hope will be the toughest. We are praying that as Braden's body begins to grow and mature, he will be able to handle these changes in medication and seizure activity. We also continue to pray for a miracle, and that Braden will go on to lead a full and wonderful life, bearing witness to God's abundant blessings and love.

We will share with your our story from Houston later this week. Thanks for walking the path along with us,
Kodi and the Fella's

Thursday, August 31, 2006

Home Again for a while

Well, they wanted to keep us for another week, but we eventually helped them decide to let us go. The renal specialist said all we needed to do is monitor blood pressure twice a day, and since we have a professional machine at home, they said we could monitor it at home and send in the results next week. The nuerology team has switched our medications, weaning us from Keppra to Zonegran for the infantile spasms. Since mommy and daddy have 'honorary' nursing and pharmacy degrees, they decided to let us handle the medications at home, and monitor his progress or lack therof on the new medications.

We got released last night from TCH, and we headed home. We got home around 3am, and were SO relieved to finally be sleeping in our own beds, after nearly a month of sleeping in "fake" beds, minus the few days we got to stay at the Ronald McDonald house while Braden was in the PICU. While it was an act of congress to get our insurance companies straightened out and find a specialized pharmacy to fill our new meds, (complicated since some of them have to be compounded), we finally got it all figured out today, even though it took over half a day! Mommy & Daddy willmost likely be headed to bed early for some good rest:-)

We head back to Houston next Wednesday for our follow-up appointments with neurology and renal, for another EEG to see how the new meds are doing, meet with the nuero specialist, and check-in with our renal doc to ensure Braden is doing good enough with his blood pressure scores, to stay off medication.

Braden sends everyone his thanks for all the cool e-cards you sent him while he was in the hospital, and he asked mommy to scrapbook all of them so he can look back and know how much he was loved and cared about when we face tough days ahead. Thanks for being a part of our world, and reaching out to our little guy with love.

Braden goes to work with Mommy until she trains the new sitter next Friday the 8th, her first day. Caralyn will be our sitter for Mon, Wed, Fri every week. Mommy is still working out what we will do for Tues & Thurs. We will be sure to let everyone know how it is going as we try the new medications, and most definitely have an update after our trip to Houston next week. Please continue to help us pray, that God will continue to bless us, and if it is in His plan, to bestow upon us a miracle for Braden.

Kodi, Brad, Braden

Tuesday, August 29, 2006

Extended Stay - again

We had a surprise visitor drop in on us from LSU, Melinda, who brought Braden some adorable new ‘crib critters’ for Braden, so he is getting to know his new froggies. He has really taken to little lamby, and he looks so cute holding him!! (We will post more of his pics with little lamby in the coming days…) One of God’s little lambs, holding another:-) Melinda also found a little alligator finger puppet with a popsicle, that looks like one of Braden’s mouth brushes, as you can see he his holding in the photo.

Braden’s seizures are getting fewer still, but we are seeing some increase in the infantile spasms again, but are hoping the new dosage of Kepra will make them go away. It looks like they will be keeping us here until they go away. We thought we may be headed home today after our EEG, but since the infantile spasms are back, once again, our plans have changed, and we may not make it back until after Labor Day. Mommy and daddy are trying to come up with a plan so that neither of them misses too much work, and ensures that Braden gets the best possible care he needs.

The renal specialist is sending us for a kidney scan today. They inject an isotope into Braden’s blood stream, to get a very clear picture of his kidneys to see if there is any scarring. This is our first trip to nuclear medicine here. Those results will help determine plan of care, for now, he is off the diaretic which was to help his swelling and help counteract those medicines he is no longer on that caused the calcium deposits in the first place.

A hospital volunteer let us pick out a blanket that some local women make for the young kids, we thought the dalmations were cute and would help his eyesight continue to improve with the white, black, and red contrasting.

The fundraiser in Wichita for September 17th, the fund-matching event, I believe will be a dinner and bingo. Some of you have e-mailed asking where and to whom you can send a check. It has to arrive by Monday, September 18th to be matched. Here is the information – please make out the check to “St. Andrews Lutheran Church”, and in the memo line, write “Braden Wilson Fundraiser”. You can mail the check to St. Andrews Lutheran Church at 2555 Hyacinth, Wichita, KS 67204.

We got another visitor last night, our friend Greg Blanchard from Baton Rouge came in for business with DOW Chemical. While I am sure that his pregnant wife Susie was hoping she could be with us, I know she is busy back home taking care of things for usJ It was a nice treat to get out of the hospital air we have been breathing for some time now, and shake off a little cabin fever with a dinner treat from our generous friends, the Blanchards.

Thanks to everyone who continues to show us your love and support, and most importantly your words of kindness and encouragement. Our hearts are full to know that so many people out there care about us, even those we only know by name or acquaintance. God’s blessings are abundant!

Kodi, Brad, Braden

Saturday, August 26, 2006

Good news about his heart

These are pics we took while still at OLOL, but too cute with the whole family in our LSU gear.

We are enjoying our care package from our friends at Sunday School… treats, books, magazines, spa care, personal care items, phone card, etc. Some of you have sent us cards from the website, and cards in the mail – both of which have helped keep our spirits high.

Braden’s seizures are getting fewer again, but occasionally we see some of what we saw with the infantile spasms, so we are a little concerned, but continue to pray that God will lead our specialists to the right actions for Braden’s case.

We heard back from our EKG, and while there are a few slight abnormalities, they said there is nothing for us to worry about long-term, and that the renal team will come up with a plan of action to address the high blood pressure, which was one of the expected abnormalities they saw… a particular valve was thickened due to the high blood pressure. He has a slight backflow in one area, but nothing significant enough to be considered a heart murmer. So Braden passes one more test!!! We won’t confer with the renal specialist until Monday for our plan of care.

When you have a special needs baby, you celebrate even the smallest of milestones, because you know just how hard your child had to work to get there, to be ‘normal’, to try to keep up with what his peers will do naturally. We are excited to report that Braden is playing with his hands a lot, he is experimenting with different ways to use his voice, and figured out how to stretch not just his legs, but his arms too when he is waking up. After two and a half weeks in the hospital, there has not been much time for our own therapy regimen, so we suspect we will have some ‘rebuilding’ to do once we are finally home again.

Brad’s folks are working with our friend Susanna to have our home tested, to make sure it is a safe place for Braden to play, live, and breathe. We may have to have some mold abatement done, in order to provide a healthy environment for Braden, as the previous owners were not prudent in using moisture-resistant materials in Braden’s bathroom, and the drywall behind the tile remains moist – a potential breeding ground for dangerous mold to grow.

For those who live in Wichita, SAVE THE DATE for SEPTEMBER 17th, as Brad’s folks are planning a fund-raiser dinner at our home church – I will post the details when we have them. I do know that this will be a FUND-MATCHING event, so any donation given, will be matched to the dollar by the church, to pay for Braden’s medical bills and needs. My family has also opened a checking account in Braden’s name that will allow for people to make donations too as well – we will post details on that when we have them as well. They will be putting information into local newspapers. We know that there are a few other things out there in the works, and we are so grateful to have such wonderful family and friends to help us meet our needs.

We would like to thank everyone who has sent us well-wishes, e-mails, cards, phone calls, prayers, and more… know that Brad and I realize how truly blessed we are to be surrounded by such a wonderful ‘community’ of family, friends, and acquaintances. Your words and acts of kindness are so appreciated, and we know that God is showing us his love through all of you. We also recognize that we could not get through this ordeal without putting HIM first, and trusting in HIS plan. We know that he is with us, as we read in Zechariah “…They will pass through the sea of trouble…this will strengthen them in the Lord, and in his name they will walk”, declares the Lord. We shall hold onto this passage, and know that God is with us on our journey to find answers and care for Braden. Thanks for continuing to lift us up in His name.

Kodi, Brad, Braden

Friday, August 25, 2006

Still waiting on EKG results

Today is Braden’s fourth month birthday, and he had many visitors. Ronda and Chase from our Bible Study class stopped through with a care package from the group, and Nurse Kristy popped in to see how Braden was doing. Braden has had fun getting to know some of his new crib buddies – the lamb and bunny, gifts from Sunday School. Bunny is brother to our Frog!

We did not have to get a pick line today, because the IV antibiotics finished up today, and our contagious contact order is over!! All panels were still negative today. YEAH – mommy and daddy get to hold Braden without restriction!! Our secretions continue to decrease, and our labored breathing has yet to rear its ugly head again, so some things are looking up for us.

We will hear the results from our EKG tomorrow morning, the cardiologist will be coming to see us. We know that they saw some abnormalities, but we are hoping they are nothing life-threatening, as we are thinking that they would have come to talk to us about it by now.

I guess once the cardiologist has conferred with the renal specialist, we will know more about our outlook regarding our hypertension. Please continue to keep us all in your prayers, as this is still a very stressful time.

Kodi, Brad, Braden

Thursday, August 24, 2006

Still here for a bit

Today we will share pictures of the room we are in… note all the little writings on the wall – those are all of the cards you have sent Braden, his collection continues to grow! The other picture is from our last day in the PICU, with our nurse Kristy, we miss her already.

We go the results from our EEG, and it showed multi-focal seizure activity. They have decided to increase the dosage of Kepra, as it is the right medicine for the seizures he his having, so they are hoping the increased dosage will stop his seizures altogether, as we have seen an increase in activity since switching to Kepra. They will continue to increase the dosage over the coming days, and do another EEG on Tuesday to see where we are. Kepra can be taken orally (through his G-tube), so it is unlikely we will get a pick line.

The pediatric opthamalogist, says Braden has perfect eyes, so we should not need any surgery to correct anything anatomical. The renal specialist wanted to wait to determine a course of action after we had an EKG done, and we had that done today, it lasted for two hours! We are hoping that the endurance does not mean we will have difficult news ahead, but we will see what tomorrow brings.

Today his secretions have been MUCH less significant, and the medicine we are on to reduce them seems to be working. We no longer have a personal respiratory therapist spending their entire day with usJ We have barely met any of them since coming to the PCU, so it seems to be working.

We will be here through the middle of next week, at minimum. Some friends from church are heading this way through Houston and dropping a care package from our entire Sunday School class, it will be nice to have something from our friends back in BR. They will be dropping in on us tomorrow afternoon.

Stay tuned for the next update tomorrow, once we hear from the cardiology and renal team about our EKG, we will send an update. Please continue to keep us all in your prayers during this stressful time.

Kodi, Brad, Braden

Wednesday, August 23, 2006

From PICU to the PCU

Yesterday they moved us from the PICU to the PCU (Progressive Care Unit), which is a unit also closely monitored for respiratory and cardiac, but less critical. We are in PCU, Room 718. Braden was almost sent back to the PICU not long after arriving in our new digs, as he finally showed the doctors here how intense and labored his breathing is. However, food and swaddling settled him for awhile. We think his clock is a little off, as he partied with both mommy and daddy in the wee hours of the morning. Maybe it wasn’t so terrible, as the pull-out couch in the room is built for one person, but mommy and daddy snuggled up to share.

Today we had another EEG to see what his little seizures look like, as we have seen a spike in that activity since taking him off the ACTH and topimax, and putting him on Kepra. We will know something to share tomorrow. We also saw a pediatric opthamalogist, as we are a little concerned about his eyesight, and they examined him and dilated his pupils to see if our issues are neurological or anatomical.

His blood pressure is still elevated, but better than it was while on ACTH. They are going to do an echo (EKG) on his heart tomorrow to see if everything there still looks OK. They have also discussed sending in a renal specialist to figure out how to manage his kidney stones and calcium deposits. We will see…

They don’t think we would have to stay much past Sunday if we are only addressing the viral infection, but our status could change depending on what the neuro team wants to do to treat the seizures, that may delay us getting home, as there may be additional IV therapy they want to do. If that is the case, then we will probably get the pick line put in on Friday.

They have put him on some medications to help slow his secretions, and we will have to see how he does with that, before they start considering looking at a tracheostomy, if that is the best option for Braden. We want to give him a chance post-seizure activity to see how he would do in therapy, as pre-seizure activity, he was doing well enough that they were ready to do another swallow study to see if he would be ready for anything by mouth. He has gotten a little drooly since the onset of the seizures, so we are hoping to see some improvement, and time may tell how he does with therapy. Again, another wait and see. We are wanting to hold off and give him a chance, as this procedure would mean a whole additional set of issues to deal with, and considerations for care. More waiting…

Thanks to everyone who has sent Braden an e-card – we have them posted in his room. The picture is from our PICU room, which shows the neat designs they offer, and the backside contains your personalized messages for him. Braden has about 40 cards now, posted on the wall in our new room.

Mommy had an answered prayer when a massage therapist was waiting for a volunteer the other day as we were leaving the Ronald McDonald House. Her back was in a twist until this lady showed up!

The other picture is of Braden watching his TV like a big boy:-) He started doing this just a few weeks ago, I think he is fascinated by the moving colors. A few nurses at the last hospital walked past his bed, and then back-tracked…. They were cracking up about how serious he was, watching his “stories”. As you can see, he enjoys the TV – hopefully this is not how he got his little Michelin baby look:-)

You can reach us by phone in our room (718) at 832-826-0770 if you would like to visit, we would welcome the chat, provided you don’t make us tell you the whole back-story again:-) In a teaching hospital, we have to do that A LOT. We appreciate everyone’s well-wishes and prayers, we will send another update soon.

Kodi, Brad, Braden

Monday, August 21, 2006

Back in Mommy's arms...

As you can see, we can at least hold him occasionally, still in gowns, but it is good for our morale! All the nurses were always asking to see pictures of the little guy, so mommy made some signs for the door, with photos from daddy's wallet. They all seem to really enjoy them.

Today, we went to the operating room and got anethesia for a laryngoscopy and bronchoscopy. The results were amazing... Braden has BOTH vocal cords working, and his airway is clear. I will trly to post those pics at the bottom - you can see his vocal cords and his lung passages. You can also see that we have NO MORE BREATHING TUBE!!!! YEAH!! So we are just waiting for more results and further investigation into our kidney stones for the cause, as the docs don't want to dismiss it as all being blamed on the topimax.

Our nurse Kristy had us Saturday and requested us today... she wants to adopt Braden to take him home to her own boys, ages 1 & 2:-) We hope to have her with us the days she is on, as it is nice for continuity of care - for Braden's sake and ours too.

God can work miracles, and we will wait patiently for ours... but He is still almighty and showing his mercy, as my sister Shala has officially been declared CANCER-FREE after three grueling weeks of radiation therapy and what we affectionately call 'medically induced bulemia'. PRAISE JESUS!!!

We found one more address, that will probably be the MOST reliable while we are here, as it was on our video monitor. You can send cards to:
Braden Wilson
Texas Children's Hospital
PICU, Pod 1, Bed 6
6621 Fannin
Houston, TX 77030

Thanks for all your continued support and love!! Kodi and the Beez

Sunday, August 20, 2006

How to Reach Us

The first pic was taken at OLOL... Braden started moving his arms "with purpose" about two weeks ago, and his favorite "chill" position is kicking his arm out to the side like you see. He also is growing more fond of his little froggy - yep, another frog, but this one is stuffed:-)

The second pic was taken two days before leaving OLOL - the bandaid is where his IV was at.

Some of you have asked where you can send us a card... we are staying at the Ronald McDonald House at TCH, 6621 Fannin Street AB485, Houston, TX 77030-2399 Attn: Guest Braden Wilson Family (Try to let us know if you are sending something, so we can alert the volunteer reception desk).

We still don't have clearance to take off the gowns and gloves - that has to come from the infectious control team, and since they suspect he could have a virus, they may keep that order until next week... we snuck in a good picture without all of that on, since we were not touching him, post-baptism.

We hope to have news to share tomorrow evening after the ENT does the bronchial scope, and perhaps Braden will be extabated. He is definitely ready for that silly tube to be OUT of his throat, he is constantly pushing at it with his tongue. At least this will mean we can hold him, even though he will still be tethered, and we will be gowned up.

Good night to all - thanks for all the wonderful cards, e-mails, prayers, and thoughts... we could not be where we are without all your incredible support. Love to all,
Kodi, Brad, Braden

Baptism Blessings

My cousin Sharon called me yesterday and within five minutes her old youth minister, now a pastor, had called us to see how he could help. We arranged for him to come baptize Braden last evening in the hospital. It will be as memorable for him, as it will us, as it was his first baptism! Pastor Dan Hauser from Crosspoint Church in Katy, TX did a wonderful job, and godparents Uncle Brian & Aunt Jenny joined us by speakerphone. Not to worry - we will be doing a renewal ceremony in Wichita back at our home church for family to attend:-)

Braden is a little more awake today, and we are waiting the final results from his cultures to get the 'clear' on no more gowns & gloves - so far everything has been negative. Since everything so far has been negative, they are going to put a hold on putting in a pick line (central line in the arm), because if there is no need to continue IV antibiotics, then we may not need the pick line. So we have a reprieve on that for one day to see how things play out. Monday he is still scheduled for a bronchial scope to see how the vocal cords are working. At that time, they will make the decision to remove the breathing tube if he does fine breathing on his own, and we have no reason to believe that he would still need it. Yesterday and today he was on CPAP, so essentially breathing on his own, but the machine ensures he breathes deep breaths and not shallow - and he is doing fine with that.

His nurses always say how adorable he is... so we are anxious to get all that tape off his face, so he can be clearly seen for the cutie-pie he really is. Mom & Dad are fine and learning the hospital, and grabbing rest when we can.

Some of you have figured out how to send Braden a little greeting, and I wanted to post it for the rest of you. We will be posting his greeting cards in his room for him... you can visit to send him a personalized greeting card that they print out on cute cards and hand deliver to his room daily.

Thanks so much for your wonderful support and prayers - we will be in touch with Braden's progress!

Kodi, Brad, Braden

Saturday, August 19, 2006


Since we have been here, they have taken blood cultures, urine analyses, done an EEG, MRI, and sent off for more genetics testing and metabolic panels. A lot of this is re-testing, but for their own satisfaction, they want to see newer results. We have an entire neurological TEAM working on our case. TX Children’s is a teaching hospital, so we have pediatricians, resident assistants, and fellows all seeking further accreditation in neurology working as a team on Braden’s case – not to mention a renowned neurologist.

Braden has suffered a few side affects from his seizure medicines, and his stint in the hospital. The ACTH has made him hypertensive (high blood pressure), and the sedation keeping him still has caused some puffiness & swelling – making him look like a little Michelen Tire baby. So they are giving him some counteractive medication, and a nutritionist is reviewing his caloric intake and it may have to be adjusted some. They are trying a higher dose of ACTH, and if they see no further improvement in his seizure activity, we will stop that therapy soon. They have decided to take him off the topimax, as it has given our poor baby renal (kidney) stones and calcium deposits. They are putting him on a replacement drug that will be less harsh on that system, as he has good blood flow to the kidney area, meaning there is no other cause for the high blood pressure. The medicine they are giving for the swelling should also lower his blood pressure.

Tonight we are having Braden baptized by a local Lutheran Pastor… so if you want to pray with us and be there in spirit, we are doing it at 8:30 pm. Please keep praying for Braden’s recovery, and know that he is in the best place possible. As many of you have asked how you can specifically help, we are working on a few ideas, and will try to post something in a day or two about how you can help from far away. We appreciate the offers to come be with us, but as this is a very stressful time, Brad and I are leaning on each other right now – and in a city we don’t know, it would put more stress on us to feel obliged to take care of anyone other than ourselves… but know that it means SO MUCH to us that some of you have offered, and that we may take you up on that at a later date.

Check back soon – we will update every few days as we can! Peace and love…
Kodi, Brad, & Braden

First Days at Texas Children's Hospital

Since we have transferred to TX Children’s, first know that our first order of business was to make it here to see Dr Wilfong, the neuro specialist. So please don’t panic because we were transferred. We were receiving good care at Our Lady of the Lake Children’s hospital, for the treatment of his pneumonia, but it was those last few days where he was going into shock that we were not getting answers for “why”. That situation gave us concern that Braden might need a higher level of care. His situation is not that common, and so we felt most comfortable getting him to a place where he can be seen by renowned specialists, and hopefully provide us with some long awaited answers.

The Kangaroo Crew was delayed in New Orleans, and we didn’t get to leave until around 11pm, and arrived at the hospital around 1am. Braden’s first flight was fine, he traveled probably better than mommy, as those quick flights tend to make me a little whoozy on a twin-propJ It took awhile to get the little man settled in his new digs. Because they don’t know why he went into shock while at OLOL, and if the serratia has been totally eradicated, we were put under contact precautions, so anytime we go see him we gown up and put gloves on. Braden was intubated and put on a ventilator before noon while at OLOL, because his breathing was so labored, and they would have to intubate for transport anyway – it allowed him to rest some. However, the tube has given all staff’s some issues to deal with. At about 3:30 am after arriving at the hospital, while getting him settled, they decided that his tube was too high, and they wanted to place it a little lower.

When they did this, they put it too far down, and it was only inflating the right ventricle, leaving the left lung to collapse. This caused his blood oxygen saturation (sats) to drop drastically, and they “bagged” him, using manual labor to breathe for him until they fixed the problem. Mommy was panicked, and had a rough time watching Braden go through such a struggle when by herself, but the staff was quick to calm her and provide comfort that they are taking good care of him. He recovered fine, and settled down with more sedation at around 4 am, allowing mommy to catch some Z’s for a few hours in the PICU waiting room – they have a customer service desk rep who helps acclimate the parents, and they have fully reclining chairs, pillows, blankets, towels, and lockers. The staff is very compassionate, and helpful. YOU CAN LEAVE US MESSAGES AT THE PICU WAITING AREA HELP DESK AT 832-824-5949. We cannot use our cell phones while in with Braden, but if we are in the room when you call for us, they can connect you directly to us.

The nursing staff has been wonderful, they helped us get set up at the Ronald McDonald House over in the next tower. It’s like a little hotel, but you can’t leave your stuff there overnight, so we have to repack from the truck every day. You can also leave messages for us there while we stay there (since our cell phones don’t get service IN the rooms). A friend of Jeff Pon (Brad’s co-worker) lives about 6 blocks from here and is storing all of Braden’s medical equipment for us, so it will be safer than staying in the truck in the parking garage.

I will post a second update with our current medical status and more pics... so click the next blog to check that out...
K, B, Baby B