Tuesday, September 5, 2017

A lot of what is beautiful in this world arises from struggle

Hello everyone!  Sorry Ive not been updating.  We've been super busy over in the Fowler household and I have not had the chance to update.  So lets start with Team Impact!

So Braydon was able to join an organization Called Team Impact.  Not sure if I had the chance to explain it however, it is for children who have/ have had chronic illness.  They get to join a college sports team and become a part of the team.  We got to join the APSU baseball team and Braydon was able to attend and practice with the boys and then also be in the dugout of every home game.  We absolutely fell in love with all the boys and the coach.  This team is TOP NOTCH for both talent and being all around good people.  I can not say enough wonderful things about both the organization and the baseball team.  It got Braydon out of the house and around people, he really needed it.  Here is a picture of him and Jordan one of the players he became close with. 

Braydon also has really really flourished in his Explorers program.  He is truly excelling in the program and has decided to start training for the competition in February.  He has made some awesome friends and when it comes to volunteering to work he does not moan and groan, he loves doing it.  Not many kids I know that have their life planned out but he does and being an officer is at the top of that list.  Here he is at a local run honoring a fallen officer.

We had a ton of amazing firsts this summer and Braydon got to meet my Uncle Mac, which is my dad's brother.  My dad passed in 2003 and he did not leave the majority of his family on good terms.  Ive always stayed in touch with my Aunt Mary, however my dads brothers have been a different story.  I have minimal memories of my Uncle Mac but the ones I do have were at the beach.  Well this summer my children got to meet him and it was the most amazing thing ever.  Uncle Malcolm looks and sounds so much like my dad it was amazing.  I am so very glad my children got to meet him and I cannot wait to have many more family vacations of us all together.  I love my family more than they will ever know and I am so incredibly lucky that my Aunt and Uncle love it when we crash their beach vacation. Here are a few pictures from the beach!

 Braydon got his permit this summer!  WHOOP WHOOP!  One of the biggest things we wanted to accomplish this summer was staying seizure free long enough to get the permit and we did it!  He has been driving all over town and will be getting his first car for his 16th birthday.  He passed the permit test on the first try and I could not be any more proud of him if I tried. 
Not long after he got his permit Braydon was off to Ireland, Wales and London.  He did fantastic!  I was so scared that he would be so forgetful that he would lose his money or passport and he didn't.  Responsibility is a huge thing for kids who live in a constant state of fog from all the medications.  He proved this summer he could handle it!  His teacher announced that the summer of 2019 that he would be taking a group to Germany and Italy and Braydon has already asked him to let us know when and where because he is going.  Here are a few of his pictures from the trip.

Then to end this amazing summer, Braydon got his first job at 15.  He is now making pizzas at Papa Murphys here in town.  He goes straight from school to work most days and works until around 7.  He is doing good at his job and more importantly he is stepping out of his comfort zone and trying to get more social.  Before he was diagnosed he was a super social child and once he started the medications it instantly shut off.  It was like a light switch.  But now he is working on it and getting out there more.

Because of his new job we missed his most recent Neuro Appointment.  We went in and got blood work to check this liver though.  While the initial blood work is showing his liver function is returning back to normal she wants to run an additional panel and recheck a few things this week so we will head back down.  Hopefully they continue to improve. 

Claudia is in full force cheer after her second hip surgery.  She is starting to run again and is pushing herself much harder than the average person.  Her grades are phenomenal and she is starting to amaze me with her capabilities.  She is so super smart, but chose to take the easy path and never study which got her ok grades.  So far this year she is pushing hard and I like it.  Between her hip and a life she has been knocked down by those curve balls a lot, but she always gets back up. 

Well, we are moving in the next two weeks!  We are buying a slightly larger home in the same neighborhood and we have made a mother in laws quarters in the home for my in laws.  So it will be a new crazy adventure for all of us I am sure, but like with everything It is just something new for us to conquer. 

Right now things are good and as with everyone it can change in the blink of an eye.  I am so very thankful for the good times because it always out weighs the bad. 

Tuesday, April 25, 2017

The purpose of life is to contribute in some way to making things better

     Well you win some and you lose some.  It looks like tonight might be a loss for our boys at APSU.  But, I don't think any of those boys realize what they are winning even when they lose. 

     So through team Impact we have become active and excited APSU baseball fans to include my husband who has never even been a baseball fan.  We thoroughly enjoy spending our weekends out at the baseball field.  Claudia has a blast and has made friends with several of the parents of the baseball players and actively engages in the games to win APSU gear. 

     When we first started this Braydon was hesitant to do it.  I loved the idea of hanging out with the College Baseball team but he is not a social kid and he was scared and nervous.  One of the things I miss the most about Braydon pre epilepsy was his spark for life and his ability to make a stranger his best friend.  He went from being one of the most outgoing children you would ever meet, he did a fashion show, he loved meeting new people, and love playing with other kids.  Epilepsy caused him to be afraid of life and the medication used to control the epilepsy takes his spark.  It really sucks. 

     Jordan and the other boys on the baseball are allowing me glimpses of the kid he once was.  I see the spark from time to time.  Tonight we saw the spark.  Shawn did not want me to pursue this.  He said it would be one more commitment and it was just "too much", tonight Shawn admitted defeat and said this has been one of the best things we could have done for Braydon.  Winning me over is easy, winning Shawn is almost impossible and a baseball team of college boys were not who I thought would do it.

     Winning baseball games comes easy to these boys.  They are amazing players and I have so much respect for all of them.  But they are killing being mentors to a young boy!!  Jordan and another boy ate lunch with Braydon today at school.  They took time out of their day to get B his favorite food, show up and hang out with him.  They are without a doubt changing his life.  When I told Jordan that he was going to make Braydons day his response was "He is going to make my day". 

     The Govs lost on the field but continue to crush at the game of life, these boys are amazing players and people and I know they will all do great things both on and off the field.  If you get the chance join the Fowlers for a game.  We will be at the next home game Friday May 5th. 

Thursday, March 23, 2017

One strong wind does not make a storm.

     Hello, all.  Surgery is over and we are home from the hospital to get better.  Surgery went great.  Anesthesia and the Doctor both said she did flawless and even though it took longer her body took it well.  For my science people I have decided to show pictures of what they did.  Her doctor LOVED taking pictures of her hip.  

     So they went in to shave the bone (femur) into a head.  Her femur needed a head and neck and she did not have one because her hip was out of place for so long.  So his plan was to check her Hip Labral (the Cartilage) and shave her femur.  

   So here is Pic #1, this shows the femur before the started the shave.  You can see the divits in the bone that are not allowing it to move properly.

So he knew immediately he would have a ton to do.  So then he shows us her labral.  It was shredded.  He said he had never seen anything that bad in a 12 year old ever.  He is an adult doctor and he said this is the normal for an older adult retired athlete.  

The tiny little shredded particles are supposed to be smooth and solid, not shredded.  So he went to work and anchored the Labral to the bone behind it.  It took three anchors to hold it down.  
He used nylon rope to anchor it in and this is him putting in anchor #2.  Her body handled it all very well and he was impressed with how well she did.
Here is her bone after it was shaved.  You can see he created the head and neck and now the head is smooth not bumpy.

She is one tough cookie, gonna be honest if a Doctor did all this to me you would have to put me out to pasture lol.  We are super proud of her and she cannot wait to show everyone her pics in person.  She is proud of her super cool new hip!!


Saturday, March 18, 2017

Choose your friends with caution; Plan your future with purpose, and frame your life with faith.

     Well, in just a few days Claudia will be having surgery #2 to correct the damage done on her hip.  I am stressed beyond belief because they are unsure if her hip will be strong enough to continue to cheer.  When I have told people I get a look, like Why are you more concerned about Cheer than her health.  I am not more concerned about her health, but if you knew my story you would know why I am stressed.  So here is my story.....

           When I was kid I had plans.  My plan was to grow up, become an attorney and change the world.  I was going to lock up all the bad people in the world and I was going to be the best.  In early years of high school my parents divorced.  I was living between the two of them and both my older sister had moved out and were living their own lives.  Throughout high school I made some dumb decisions and did not have the grades to go to a four year university.  However, I was not going to give up on my dream.  So I attended a small community college and received several credit towards an associates in Paralegal.  My plan was to work in a law firm and go to school at night.  In my 3rd semester I found out I was pregnant.  After that I laid my plan to rest.  In reality it was not my plan.  I had made decisions that brought me to this point.  I had CHOSEN to do things that brought me here.  I am 100% ok with were my life is now and I could go back to school and become a lawyer, but honestly I no longer want that plan.  My new dream is to help my children achieve theirs.  I am ok with all of this and actually truly love my life.  I have it all, a husband who loves me deeply, two children (although in teenage years I dislike greatly) whom I love and a family and friend support system who are always there for us.  We make people jealous ;)

        Fast forward to B, his dream for as long as we can remember wanted to be in the Army or a Marine.  Epilepsy stole that dream.  It is hard for me to grasp because my life path I ruined, Braydon has not even had the chance to ruin it, epilepsy did that for him. 

       No here we are at Claudia.  About 2 years ago she got the true "bite" for cheer.  She cheered for Coach Vicki her 6th grade year and loved everything about it.  So about this time a year ago she wanted to try out for a competitive team.  Dad and I talked and we were all about it.  Only 3 weeks before she was due to tryout we took her to the dr for a bad limp.  I actually told the girls at work I thought she would be hospitalized and I wouldn't be there for the rest of the week.  See I had googled her symptoms and did some stretches on her to locate the pain.  That showed me she had a SCFE.  The doctor convinced me that she did not need a X-Ray and that I needed to stay off google.  He let me know she could not try out for cheer and "maybe next year".  The limp got worse and by July it was horrible. 

      July we see another Dr who also says we don't need an X-Ray and at the urging of a family member I pushed it.  The Dr came in, told me what I already knew and we got in the car and drove to Vanderbilt Children's hospital.  She had surgery the next day, we spent a few days in the hospital and she recovered well at home.  We were told there would be follow up surgeries over the years which would eventually end in a full hip replacement.  SO she heals well, she cheers with school again (not her best year, but considering her surgery she did amazing) and did a half year performance team with a local gym.  We find out tryout for the competitive team are coming up and we decide to go for it.  We go for our surgery consult for surgery 2 and he says "No try outs this year, maybe next year...".  He followed up with letting us know she may never cheer again.  Her hip is in bad shape and it all depends on her.  How hard she is willing to push and how much pain can she endure.  Also, if her femur will be strong enough to endure the jumps and impacts of cheer. She wanted to get a scholarship to college for cheer.........

       Have you ever been told your child cant do what they love?  Have you ever been told that your childrens life plans are possibly destroyed at no fault of their own?  It's a hard pill to swallow.

     So no, her health is not as important as cheer and no I am not a crazy cheer mom.  I am a mom who is tired of hearing that she might have to tell her children no to something they love.  As a mom I am supposed to support their dreams and encourage their life paths, not tell them no. 

    So my plan will be to continue to support both of them and make decisions on what is best in every aspect of their life.  To help them plan their future with purpose and frame their life faith. 


Wednesday, March 1, 2017

Happiness is not something ready made. It comes from your own actions.

Hello my faithful followers.  A few things to talk about tonight.  

Claudia- Her hip is all kinds of jacked up and that is putting it mildly.  However we have a plan to fix it and we are not going to stress it.  We are going shave the right hip were it restricts her range of motion.  This will allow her much much more range of motion and will allow her to try out for competitive cheer like she wants.  Her recovery time is 4 weeks, so we are trying to squeeze her in so she has time to try out for cheer.  Then in a year or two we will remove her hardware and possibly lengthen that leg.  She needs it, she is WAY off center.  So jacked it may be, but it will be fixed over the next few years.  She is tough and is getting what she wants by waiting to remove the hardware so she can still cheer this season.  Right now all the almost 13 year old cares about it cheer, so we will let her have it.

Braydon-  Ready for some exciting news?  Braydon is the newest member of Team Impact.  Team Impact takes kids with life threatening illnesses and chronic illnesses and gives them an opportunity to work directly with a college sports team.  So cool right?  Well we thought so, so we went all in and we have been paired.  Wanna know more?  Here is a link to Team Impact


So who did he get paired with you might ask?  Well we are SUPER excited to announce that we are paired with the Austin Peay State University Baseball Team.  Braydon will be spending some time with the Baseball team starting tomorrow.  This is huge and I will get to the whys in a minute.  Braydon smiled for the first time in a long time, like a genuine smile.  My mom is going to be taking him to the APSU baseball field and will be staying with him until I can get off of work.  We will be attending our first game either Friday or Saturday.   
Here is the APSU baseball website


So why?  Easy, my kid needs some self confidence and motivation.  I am hoping these college kids who are volunteering their time to spend it with Braydon will help.  He will get to attend practices and games at his choosing.  
I met the coach today who told me with all honesty he had no desire to be a part of this and really didn't like the idea of it.  But he said the magic words, he prayed about it.  The more he thought and prayed about it he decided to speak with me and give it a try.  He asked a lot of "tough" questions.  The more we talked the more I liked him.  He was straight forward and had some great questions.  One of the hardest was "Tell me what he was like before?"

Wow, it was like the wind was knocked out of me.  How was he "before"?  Well that is easy, he was so super social and had so many friends.  He was funny, oh my goodness he was hilarious.  He was so outgoing and talked to everyone and anyone.  He was happy.  He. Was. Happy.

I want someone to ask me to tell them about Braydon and me be able to say"He IS happy".  I cant right now and as a Parent that is the WORST feeling in the world.  So for now we search for his happiness.  His happiness is something that only he can find.  I can help him and I can push him in certain directions, which is what I have done with Team Impact and the APSU Baseball team.  I'm hoping Coach Travis and the team can help him find himself again and bring him a joy I rarely see anymore.  So just like the Coach said Im going to pray on this.  I am going to pray that God will help us find his happiness and that he will lead this team and this coach to help him.  

Right now I am sad.  And it is ok.  Ive had to remind myself it is ok to be sad.  Being happy all the time does not make everything better, it just lets the outsiders think it is.   I'm sad I let this get this far.  I HATE epilepsy and everything it has taken from the family. 

You never know someones struggle until you have walked a mile in their shoes.  I'm so incredibly lucky my struggle is not worse.  It could be.  I am so blessed for this opportunity for Braydon to met some amazing college students who have worked hard to be APSU baseball players. I believe that everything happens for a reason.  I found Team Impact for a reason, the baseball team was picked for a reason and the Prayer of the Coach changing his mind is all part of a plan.  I can't wait to see how the plan plays out. 

Sunday, February 26, 2017

Faith is taking the first step even when you don't see the whole staircares

First let me address some awesomeness!!  Claudia successfully completed her first cheer competition.  This is huge, especially since the night before it was 80 degrees and the morning of the competition it was 33.  We are learning how to deal with her hip so Friday night we iced her up, gave her ibuprofen and wished for the best.  Honestly it could not have gone any better.  Those girls worked hard, looked great and did amazing.  I am 100% sure when she wakes up today she is going to be in some serious pain, however she has already told me it was worth it.  So starting on Monday we have added a new class for cheer and she will be trying out for the competition team this spring.  Here are a couple pics from yesterday

We head to Vanderbilt on Wednesday and we will get some new xrays and hopefully get the next surgery scheduled.  Once they shave the bone she will be able to stretch that hip out so much more and I just know some stunts she wants to nail will be so much easier.

Now onto Braydon and his appointments last week.  All went well.  We saw two of his doctors and they both were pleased with the progress they have seen in the six months since they last saw him.  They were both concerned about his weight, as we all are.  Shawn and I both have been working with him, working out, eating better and trying to mentally help him.  I approached the subject of depression and Dr. Braun (his adolescent Dr) said honestly being aware there is potential for an issue is the first step.  She did not think at this point and time we needed to do anything going forward just keep an eye on it.  She gave us a list of counselors to have him talk to at any point we feel he needs it.  
His Neuro Dr (Dr. Robinson) tried to get him to have a tremor in office and could not do it.  She noticed he shakes pretty bad, he could not hold a glass of water steady and could not draw straight lines.  So she talked about going up in medication because she believes that the shaking and tremors are not necessarily seizures, but without a doubt neurological.  Every time we see her now we have to check his liver enzymes and his depakote level.  He currently takes three seizure medications.  
1.  levetiracetam 2000mg twice a day
2.  depakote 1000mg twice a day (this is a Valproic Acid)
3. gabapentin 300mg Once a day
#1 does not metabolize through the liver, #2 is known to be very harsh on the liver and #3 honestly is up in the air.  I was told that he is not taking enough of #3 to affect the liver.  
So when we left her office the plan was to probably increase #2 or #3 to help with the tremors but we needed to wait until the blood work came back.  Well they came back they were not at all what we expected.  His liver is out of whack and it is a result of the medications.  His liver enzymes are too high and his Valproic levels are too high. 
So what do we do?  After a few days of waiting to hear from Dr. Robinson the decision is Nothing.  We have tried other medications to control the seizures and he had some bad reactions to them.  The only other one we have tried is so expensive we cannot afford it, and even that is not a true anti seizure medication it is considered a booster to his other meds.  Dr. Robinson had her baby yesterday so she is out of our game until May 30th.  She wants us to do some more blood work when she gets back and make sure his liver is getting better and not worse, but honestly it is a 50/50.  
So pretty much here is our scenario..... we are giving him these medications to allow him to live a seizure free life in hopes that one day he can drive a car, have a job, and live a normal life, but on the flip side we are damaging his liver and are "hoping" it does not get too severe.  
We have things to watch for and I will not hesitate to take him in to be evaluated if I start to notice the liver is getting worse.  But we are also going to have faith that this is the plan we are supposed to be on.  That this is really going to be our Miracle, that his liver functions are just going to get better and his body is going to adjust to the medications to include no more seizures.  

Here is a little insight into our world, this blog shows you some of what we struggle with, however honestly I sugar coat and leave things out so that I can stay positive.  For example last night Shawn and I were in bed watching TV I heard what sounded like a gurgling noise.  I was starting to panic thinking Braydon was seizing.  I shot up and looked around and Shawn had to let me know that it was just Braydon laughing.  I don't tell you these things to feel sorry for us, I tell you so you know what 1 in every 26 people struggle with everyday.   We will be ok and this is just another bump in our extremely bumpy road.  
Shawn and I both used to get so angry at what "life has dealt us" but honestly we know we can handle it and that is why time and time again life throws us a curve ball.  I do ask however that March 26th is wear purple for Epilepsy day and yet again I am going to ask all of you to bust out your purple for B.

Sunday, February 19, 2017

Somehow our devils are never quite what we expect when we meet them face to face

     Shaken to my core does not even begin to describe the past few weeks.  When you are told that a little girl you have watched grow up both online and in person passes away very unexpectedly it takes your breath away and honestly I have not caught it back yet. 
I keep asking myself why would God take such a perfect soul?  So pure, sweet and innocent.  I also know you are never supposed to question God and if there is one thing I have learned over the years it is there is a reason and it may be one I never know.  My heart has physically hurt for the family and the sadness has been overwhelming for me so I cannot even begin to know how the family feels.  Presley Elle Wood I consider myself lucky to have been a small part of your big world.  You have and will forever will continue to change this world.  I know you are in no pain and your looking over this world getting sassy with us for all still crying.  Please continue to pray for this family,  I do not know how to help other than to pray!

    The next two weeks are super busy and appointment filled for the Fowler Clan.  Let me Start with Braydon......

    Braydon has a few appointments on Tuesday.  The kid is really starting to turn into a medical mystery and it is making me crazy lol.  We have a lot of issues to address and one of them is something I don't want to address but feel it necessary.  I am starting to wonder if all the medications have finally gotten to him and if he is a bit depressed.  I am trying so hard to differentiate what is normal teenage behavior and what is a medicine induced depression and honestly I cant tell.  It sucks guys it really does.  Pretending everyday I am not worried about him and continuing on with living as normal life as possible.  I spend so much of my time stressed that he is not ok and wondering if the way I am handling everything is the wrong way.  Just know that you may not realize the struggles people are facing and you may not know what is truly in their heart.

     Anyways we have several appointments for him on Tuesday,.  Hopefully we will get this all figured out and all my stress and worry is nothing. He also has a new symptom.  His right hand is shaking uncontrollably and we have no clue why.  Dr. Robinson thinks one of two things.  It could by a new type of seizure or toxic levels of Anti Epileptics in his symptom.  Neither are a good scenario for us.  My heart is breaking for him.  I worry day in and day out that he is just in a situation that he will never see himself out of. 

Now to Claudia, oh lordy Claudia lol

     Claudia has taken up running as a way to let off some steam and I am completely ok with that.  However her lungs just suck.  She cant seem to recoup after a run and is struggling to catch her breath.  We have her inhaler and if she uses it before the run she is better but if she takes off without it she has a very very hard time regulating her breathing.  So we are going to see the Dr on Tuesday as well.  We are going to see if maybe we can get on a daily medication to help control the asthma.  Again it is not a problem until she starts the physical activity.  Cheer can be hard on her but honestly nothing is comparing to these mile runs she is taking, they are brutal. 

   On March 1st we see Dr Schoeneker and we are both excited to see him.  He is going to be super proud of all her progress but Claudia is ready to schedule the next surgery to reduce the clicking and resistance in her hip.  She cant wait to have full range of motion and shaving down the knot on her bone will allow that.  However lately she has been having some serious pain that is consistent with what they believe could be arthritis.  She is miserable some days and the pain is so bad her hip physically locks up.  So Dr. S wants to discuss with us the possibility of removing some of the metal in her hip to reduce those symptoms.  Claudia is begging me to not even consider that because it will be another major surgery and the Knot will be very minor in comparison.  We will take it all in and make an informed decision as a family. 

     My current devils are sadness.  I am normally a happy go lucky person and honestly I am sad and stressed right now.  Never assume you know what is going on in someones life always take the high road and have some compassion.  I think compassion is lacking in so many people these days.  Understand that you may have NO CLUE what is going on in someones personal life and that very well may be affecting their normal day to day life.  Know that while you may be having a bad day someone might be having it worse. 

Try kindness this week and compassion and see how much farther your smile will go.