Braden and his friends

We just wanted to share some pictures of Braden's new friends. The first pic is of our Texas Childrens Hospital PICU Nurse, Kristy B. We stopped in to see her on our last trip to Houston. The next one is of all Braden's school mates on Valentine's Day, and the third is on Valentine's Day with the owner of the daycare, and one of Braden's special attendants - Latacia. The last picture is of Braden's new little friend Owen, he is two months old and the son of our friend Kim from Sunday School. Owen is also quite the "big baby", he is already just as long as Braden at 26 inches, and he weighs about 15 lbs, and can hold his head up really well - I just can't believe he is only 2 months - it's like holding a 5-month old baby!! Owen was quite fascinated to discover the "other baby" (Braden), and they are sure to be great buddies.

Braden is adjusting well to his oxygen regimen, and just now starting to adjust better to his feeding schedule. While we still have YET (at ten months) to have a full night's sleep without interruption, we are only getting up about twice, and about 15 - 20 minutes... let's hope this trend stays longer than the twice-a-night-up-for-at-least-an-hour trend... :-)

Have a great weekend everyone!
K,B&B

Happy Fat Tuesday

Although we spent this Mardi Gras parade season in the hospital, it ended happy, as we got to go home today. Braden got to watch this adorable little hospital parade that came through - some of the kids in other wards rode in little wagons and tossed out beads, cups, and stuffed animals. With his little hat, the nurses were calling him the Mardi Gras King.

We came home with some new "toys". Braden will now be on Oxygen when he sleeps, because his body has a tendency to relax too much, and his oxygen saturation will drop as he gets really relaxed. We were told that 98% of the kids who have oxygen at home, are put on it for sleeping purposes. So we will get set up at home and at the daycare too - so he will have O2 on-hand when he is napping, if his numbers make it necessary for him to have the extra help during the day.

We will also be adjusting his feeding schedule and amount... Braden is gaining weight appropriate for his age, however, his length growth has been pretty slow... so we have to find a middle ground, so as too much weight on a smaller frame doesn't make it that much harder for him to breathe. We hope to get him off of the night-time feeding machine, but we will have to see how his body tolerates the new schedule & caloric intake. He is getting close to the age where we need to decrease the calories some, and increase the water intake.

They believe he just had a respiratory virus that had to run its course, but may do a sleep study in the future to investigate more about his apnea episodes. So we will keep everyone posted about that. For now, we will keep praying for Braden to grow stronger, and that he will soon grow out of some of these issues as he grows older and stronger. He continues to make slow progress, but at least we are making progress!

Thanks for your continued prayers and support.

Kodi, Brad, & Braden

Happy Mardi Gras.....in the ER

Saturday morning Braden experienced some respiratory distress due to some blocking of his air way because of some mucus. Kodi and I decided that we need to visit the ER. We arrived at the hospital at around 7:30am Saturday morning and by 2pm we were admitted into ICU, our normal hang out spot. The dr's said that this was precautionary and for 24 hrs, but we still remain in the ICU until the dr makes rounds. Not sure if we will be released to the floor or home. Braden is resting fine now and all the tests have come back negative so far, so that is good. We will post something once we know we are going home.

BRAD

Juicy Update

Braden wishes all of you a Happy St. Valentine's Day, and sends many kisses your way! He really seems to be doing well at his new daycare, and they really have become like a second family. His caregivers all want to hold him, because he is so cuddly, and they call him "JUICY". The little ones are adorable & all say hello to him and interact with him. When I show up, they all run to the door to greet me with hugs - what a great way to end my day!!

Braden is now 20 lbs and 26 inches long... we were told that some of the medications he had to be on during his long hospital stay may slow his length growth for awhile, so maybe he will still be able to catch up:-) We told you that he has started rolling back to side and side to back, he is holding his head up for longer periods, he is starting to bear weight on his legs (which also, strangely, calms him down quickly), and is getting more social. If a new person enters the room & he hears their voice, he will look for that new voice. He is still playing around with figuring out how to use his voice without crying, and still trying to cut teeth, but none have come in yet.

Braden has been a good sleeper for a while now, but up until this past week, Brad and I were lucky to get three or four hours of sleep each night, given his machines would go off. Braden would be fast asleep, but in his relaxation, he would have a hard time keeping his airway open. For the past month or two (since Thanksgiving), his cough has really gotten stronger, and he is clearing stuff on his own. We thought he got a bug at Thanksgiving, but in retrospect, we think it was just then that he was learning to clear his own airway with a good cough! If we heard him cough at night, we would immediately rush to his bedside to suction him... but over the past few months, he is clearing it on his own - so we got maybe four or five hours of sleep apiece. Well, this week, Braden has slept through the night, THREE NIGHTS IN A ROW!! We still have to get up at 2 to add milk to his feeding machine, but until early this morning, he has been sleeping and clearing mucus all by himself!! So maybe some full nights of sleep are on the horizon - yeah!

Thanks for all your support, especially over the past few weeks as we make this transition with his caregiver. Once we submitted to God's will and just said, "Okay, show us the door you want us to go through, whatever that may mean", He has blessed us abundantly!! On our visit to Houston, the docs said that they have seen improvement in Braden, so we will remain hopeful that one day Braden will catch up to his peers in several areas, but continue to be thankful for the progress he makes, and thankful for every day we get to take care of this sweet little man in our life.

Happy Heart Day from our family to yours - The Wilson Family

God is SO GOOD!!!

We have some great news to share with everyone. As I grow in my faith, I am still learning that I am worthy to ask God not only for the really big things, but the small things too. I have also learned that only He knows my innermost desires and can deliver the things in our life that we truly need.

Shortly after Christmas, a news story aired featuring a mom who has a special needs child, and would soon be opening a daycare that would accept children with special needs. You wouldn't think that in this day and age and political era, that childcare centers would be able to discriminate against the disabled - but it happens to us all the time - we just don't sue when we are denied access to services. This mom faced it so many times, she finally decided that without any government help or grants, Baton Rouge had a need for a facility that would openly accept children with disabilities. I only wrote down the name of the place and only jotted down an address, as I wasn't listening too closely, as we already had plans for Braden in the long-term.

I thought that I had thrown this paper away, since I wasn't really going to need it, but for once, my procrastination paid off. This past week I began to clean up the paper trails around my house and found that piece of paper again with a name and an address. So Braden and I packed up our things and just drove over. The owner's mom was there, and she took my information, and I made an appointment to come meet with the owner of the facility last Friday.

We started talking, and I learned that the owner (LaTacia) has a four-year-old special needs daughter too. I soon learned that her daughter also has epilepsy, a g-tube, developmental delays, an apnea monitor, has had a pulse-ox in the past, and also has a suction machine. We were there for about 15 minutes when LaTacia asked to hold Braden while I started to fill out some initial paperwork - and she went straight into "Mommy-Mode" and asked where the "on" button was on the suction machine was - I could not believe it!! We spent a few hours with her this past Tuesday in the center, and I got to meet and train Braden's other caregivers (four of them) - all of whom are related to LaTacia. They are very in-tune to Braden's needs, and have a very strong hold on their faith. They are AMAZING!!

Braden went to "Kidz Korner" for two full days this week (Wed & Thurs) and is doing great. After we came home Wednesday night, I literally began to cry for joy that God had answered our prayers, as I was reading Braden's daily progress report from the daycare. We could not have built a better care-giver for Braden if we had put in a special order with God himself. Tears of joy, thanking God for his everlasting love, and trusting that He will always have a better plan for us if we put our trust in Him.

We head to Houston to see the lead nuero on Monday, so we may have some nuero update next week. He is still having less than 10 seizures a day. Last week he had 8 bradychardia (slowed heart rate) episodes, and to our knowledge only has had 2 this week. We have some cool news to share... Braden is started to roll from his back to his side, and from his side to his tummy, until his arms get caught in the way:-) He is now doing this when he is not throwing a fit, so we think he is learning!! As you can see, Daddy is also teaching him how to use the phone and the bluetooth, so he may be calling you all soon!

Thanks to our ever-faithful prayer warriors, who continue to lift us up. Thanks to our bible study groups who continue to pray for us collectively, and to all those we don't know who have devoted time to add us in your prayers. We are so very thankful, and blessed by all of you.

Have a great weekend, we will be watching the SuperBowl from our hotel in Houston!!
Kodi, B&B

Even MORE Limbo - Our faith is being tested

Well, we received the news this weekend that Braden will not be going to Susie's after all. We eagerly wait to see what the Lord has planned for us next.

Our friend Stacie has been an amazing caregiver to Braden in the few weeks she has been watching him, and we are so blessed she was able to help us for a few short weeks.

As of today, we have no temporary or permanent solutions, and so begins another round of trying to figure out who can provide good care for our son. The women of my bible study have been TRULY AMAZING and supportive, and they are all trying to help me find viable solutions.

Please pray for us, as this has been very emotionally distressing on Mommy... we know that God will show us His true plan for us, but until we find the solution, it is truly agonizing every day we don't find an answer. We hope to find a stay-at-home wife or mom who may be interested in taking Braden, or a college student with the availability and willingness to learn about how to care for our little man. He is actually pretty easy, the hardest part is finding a comfort zone when his machines tell you something is going on. We really loved his last nanny, Ms. Caralyn who has moved to TX to take care of another families' children as a live-in Nanny, as her schooling plans didn't quite pan out for her in Arkansas.

We are open to any and all suggestions you all may have for us, as we are running out of options. We are faithful that God will send us an answer, and that Jesus is with us in our fiery trial of life - we are not alone. (Isaiah 43:1-2)

Thanks for your continued prayers and support!
Kodi, B&B

In Limbo

First let me share that God continues to bless us amidst a multitude of queries and uncertainties. We hired a nanny before we left for the christmas holiday break, and when we came back, we learned that she was not going to be able to take Braden. So we interviewed again, and found a great potential candidate, that decided before our last day of training, that it might be too much for her. So we were two days into what was supposed to be my "back to work" schedule, wondering what on earth we were going to do for 6 - 8 weeks until Braden will be going back to Susanna and her new baby Kailey full time.

In the fall, I joined a bible study group that is specifically for moms/grandmoms of special needs children. Immediately I felt a cameraderie with these women, and felt like I had found a place that would provide me with the "support" that I was needing, both emotionally and spiritually. After sharing with a few women in my study, that TWO nannies had essentially backed out on us, I made a few phone calls to a few women in my group. One of my friends in the group, Hillary, offered to take Braden back in December when we had to go searching again after Caralyn moved. The unfortunate thing, is that she lives 40 min. away, and the commute from her house to Baton Rouge in morning traffic is an additional hour & a half. Yikes. So we were hoping to find someone who could take him temporarily to fill the gap, who might not create a daily four-plus hours commute:-)

God answered our prayers through a friend from study, Stacie Coles. Stacie has her own special needs child, Brian - who is 21 and suffers from an unnamed bone and muscular disorder. Stacie works out of her home while Brian is away at school, and did not have any work set up for January... so she GRACIOUSLY accepted our request to watch Braden for a few weeks. Stacie has been an amazing friend already, and now she gets to love on Braden 3 days a week with her Boston Terrier, Lucy. Braden is doing really well at Stacie's. I can't even begin to describe the emotions I feel when Stacie agreed to take him. This is such a huge burden lifted from our shoulders - emotionally, spiritually, financially... and we will always be grateful to the Coles family for helping us in our time of need. I have attached a few pictures of Braden with his new sitter(s):-)

I am also attaching a link to see our PICTURES FROM CHRISTMAS on snapfish:
http://www1.snapfish.com/share/p=235171169087655910/l=239882987/g=24589807/otsc=SYE/otsi=SALB
Thanks for continuing to keep us all in your prayers - they are helping!! Braden is still having the occasional "BLUE episodes", so we hope to get the heart monitor soon to get through the 30-day recording period so we can HOPEFULLY find some answers and solutions for this problem. Thanks for checking in with us, we will post another update next week!

Kodi, B&B

Back from Break with a bang

Our Christmas holiday was such a wonderful time with our families, it was hard to come back to daily life here. Braden traveled just fine on the trip home, but he seems a little more settled now that we are getting back into routine with him.

Some neat news about Braden, is that the poor little guy is pretty fussy these days - he is trying to get some teeth! Since he is not a baby that picks things up and puts them in his mouth, we are having to hold his teething toys for him, so he can chomp down on things, but he seems to enjoy the cool ones from the fridge, and likes this one we got that vibrates when you chomp down on it. I was super-excited to see that Braden is figuring out cause-and-effect with this toy!
We think he has been fighting a virus on top of it, as towards the end of our trip, he was spiking a fever above the 102 mark. So on our return, we have been treated with injectable antibiotics, and he seems to be responding very well. We are also learning that when Braden is feeling pretty good, he will only have one or two seizures a day - praise God!! PROGRESS!!


We visited the pulmonologist who has reccommended we put Braden on another few machines, and I will share more about them once they get here. One is a "cough-assist" to help Braden clear things that my be a little deeper in the throat. The other is a 30-day heart monitor. Braden started having a new kind of seizure in the past few months, that makes his heart rate really drop low, but once the seizure is over, he recovers. What the doctor wants to know... is if it is a heart arrythmia that is causing a seizure, or a nuerological issue that is causing autonomic seizures that result in the drop in heart rate. So this should determine the cause... please pray that Braden's heart will be just fine, and these issues are nuerologically related.

We had some excitement last night, as I went to bible study and Brad had a ball game, our friend Stephanie agreed to watch Braden. She is a quite capable and knowleadgeable baby sitter, but nothing could have prepared her for the night she was about to have... She called me to tell me that Braden's O2 saturation (sats) kept dropping, so I walked her through suctioning him good. She called back about 15 min later, saying his sats were staying in the 40s and 50s, and suctioning was not helping. I was a little panicked, thinking maybe some phlem got lodged in his throat, blocking the airway, so I had her pound him on the back and keep trying to suction. Nothing was working.

I hopped in the car and was racing home - thank goodness my bible study group started praying for me as soon as I left, because knowing all the traffic laws I broke trying to get there as fast as I could - I could feel that God was protecting me. I called 911 to have them get Braden oxygen, and as soon as I got there, I flew the door open, I think I pulled one of the fire department guys out of the way like supermom, and gave him good suction, made sure his airway was open, and re-checked his foot attachment, and suddenly I noticed that his lead had come loose from his foot. As soon as I repositioned it, Braden's numbers showed us that he was just fine, and there was no need for panic. But over the phone trying to figure out what was going on, all I could think about was Braden not getting enough O2. All is fine - he was probably fine the whole time. The sitter (Stephanie) said she never saw him get blue around the mouth or face, and he wasn't acting any different, so she just wasn't sure what to do. Now we have a great story to tell about how while I was crying and driving like a maniac, the only thing that was wrong was the silly lead had come off his foot partially. We will see if Stephanie ever agrees to watch Braden again, I was sure that they were going to have to give HER oxygen amidst the madness. :-) She did great, and did everything exactly right... I am glad she was there taking care of him - as there was nothing else anyone could have done different. It was my fault for not explaining the lead could come loose! Well, it will make for a great story at social gatherings. The joys of parenthood can overwhelm me at times:-)

I have attached some pics of the little guy at christmas, and to share with you how LONG and curly his hair is getting. The pics are post-bath where it really curls up - he has some crazy hair to deal with... I thought I had bed-head in the mornings, but he takes the cake!

Thanks for all the christmas cards, the wonderful gifts, and the love you continue to send our way and lift us up in your prayers. We are ever-so grateful as we begin our 2007 journey. Love to all!

Kodi, B&B

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

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

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

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.

Blessings,
Kodi, Brad, & Braden

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

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

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.

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

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

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

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

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.

THANK YOU, THANK YOU, THANK YOU.

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