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