Butterfly Fly Away

Caterpillar in the tree, how you wonder who you'll be
can't go far but you can always dream
Wish you may and wish you might
Don't you worry, hold on tight.
I promise you there will come a day
Butterfly fly away

 

     Tomorrow my baby turns 11 and to be honest I have been so busy that I have not even really thought about it.  That is sad!!  I'm sad to think that I had to run out last minute tonight to order his cake for today!!  I'm now 100% focused on B, well at least until tomorrow at midnight!!! 


     We have been teasing him with his present!!! He cant wait to get it and I cant wait to give it to him!!!!

     The sleep study went well!!  Cant wait to get the results though!!  Ready to know what is going on at night!!  Poor kid his best night of sleep was strapped to wires and tubes!!!  We should know something in a few weeks. 

    Everyone sleep well tonight and if you see my B tomorrow tell him happy Birthday!  My baby is 11!!!!!



If I were asked to define Motherhood. I would have defined it as Love in its purest form. Unconditional Love

 

 

 

 

     So Thursday night was Best of Clarksville for Little Country Schoolhouse.  For those that do not know that it is, it is a HUGE fundraiser for the March of Dimes.  We are some fundraisers over at the LCSH, so of course every year we participate!!.  Hundreds and Hundreds of businesses come out to promote why their business is the best.  Everyone gives away free things for you to take home and I got to spin the wheel of Fate and Lucky 13's hands of fate Tattoo shop.  I won $100 off a custom tattoo.  Sooooo since I have been thinking about getting one anyways on my day off yesterday I went and got it!!  YAY!!!   I actually got two!!!   The tattoo I had picked out was exactly $100 so this was literally fate!!   So here they are for the first time!!

 



 

 

Braydon was super happy to see them and I am glad he understands why I did it.  Hopefully this will not be a permanent part of his life and he will grow out of it but either way it will forever be a part of my life.  I will always advocate for Epilepsy!!

 

 



If you don't think every day is a good day, just try missing one

     Man I have some cute kids!!LOL!!!   SO next week is the sleep study!! We go in Monday night and do the sleep study.  He is actually excited, a night in a hotel!!! HECK YEAH!!  LOL!!!

                We have been seizure free for a while now and it feels good.  Don't worry I'm knocking on wood!!  Next month is Epilepsy awareness month.  As a family I am wanting to do something to recognize it and I really have no clue what to do!!  Any suggestions??  I'm going to get a purple ribbon and wear it everyday for the month of November but I really want B and I to do something that will make a difference.  What do you think?

 

 

 

     I have someone (very special) who is getting me my tattoo for Christmas so maybe I can do that next month.   Let me know if you have any ideas!!

 

                    Anyways just a short update and things are grand!!  I will update next week after the study!!

 

 

                        Thanks again to everyone who is always there for us!!!

 



About Epilpesy By: Braydon Fowler Art By Claudia Fowler

Hi my name is Braydon.  I have Epilepsy.  You might not because you are different from me.  Epilepsy is not so fun.  You have to be very careful on your medicine, if you forget you will have a seizure.  When you are alone it is not safe.  When you swim there has to be a life guard. 

 

 

 

 

 

Child getting medicine

 

 

I hate epilepsy but it does not hurt me at all.  I'm going to have a sleep study on Veterans Day.  A seizure is caused by your brain.  Sometimes I am scared to tell someone that I have seizures.  But it wont hurt to tell a few people.  I did two people and it did not hurt.  Some people think it is weird like Lance and he made fun of me.  You might have seizures and if you do you should be proud because you are special.  Some say that I am lucky.  It does not matter if you have epilepsy like me we are all the same.

 

 

 

 

About my Book

It is about me and my epilepsy and how it can help you and how it cant. 

 



Even if you fall on your face, you're still moving forward

    We saw Dr. Cuevas today!! YAY!!  Man have I missed that man!!  We went over a lot of things and hopefully we are getting some answers.

   Things we went over and discussed

 

     1) ATTITUDE-  Okay I understand he is almost 11 and we are going to have these hormonal rages that make me want to murder my own child, however I am not convinced that this is hormones.  The way I explained the rages and depression the Dr said it was classic medicine.  Here is the list of possible side effects of his current medication  :

 

drowsiness

weakness

unsteady walking

coordination problems

headache

pain

forgetfulness

anxiety

agitation or hostility

dizziness

moodiness

nervousness

numbness, burning, or tingling in the hands or feet

loss of appetite

vomiting

diarrhea

constipation

changes in skin color

Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

• depression
• hallucinating (hearing voices or seeing visions that do not exist)
• thoughts of killing yourself
• seizures that are worse or different than the seizures you had before
• fever, sore throat, and other signs of infection
• double vision
• itching
• rash
• swelling of the face

As you can tell, this med is NO JOKE!!  So we discussed the options of changing his meds, however anything else that he takes has the potential to "attack: his kidney and Liver and would require blood test every 6-8 weeks.  So changing meds is not a decision to come to lightly.  We have decided to wait until we do a little more testing.

 

 

     2)  His falling out of bed and other night time issues!!  Could be seizures could be Sleep apnea.  The Dr. asked Braydon a series of questions that leads him to believe that Braydon has sleep apnea.  Which could be increasing the horrible mood (our reasoning to NOT jump into changing meds).  Some incidents that have occurred at night are with out a doubt seizure related, the other is classic sleep apnea.  Claudia has mild obstructive sleep apnea(so mild that at this time we are not treating it, however if it affects her later down the road they will take out her tonsils) and although sleep apnea itself is not hereditary the facial and internal characteristics i.e tonsils and adenoids are very hereditary.   So after a through exam they discover some large tonsils and adenoids......so if lack of sleep causes seizures and he has sleep apnea we may have found.  Don't hold your breath that will not "cure" his seizures however it could help them....so YAY!!  Downside we could be looking at having to have his tonsils and adenoids removed and at his age that would be HORRIBLE!!!  However we are willing to do what we have to do!! 

 

     3)  From a neurological stand point Braydon is doing MUCH better than the first time Dr. Cuevas saw him.  Apparently for up to a week or two neurologically can put you in a cloud.  Causing slower responses and other nero things.  So the Dr said he looked MUCH better than our first visit!!  YAY!!!

 

     4) The "bummer" news and it is not even about Braydon!!  Dr. Cuevas received an AMAZING job offer at another amazing hospital and will be leaving us Mid October, I am so sad!!   We are going to do the sleep study and follow up hopefully before he leaves so we can see one last time.   

 

 

I feel great after this appointment, I feel like for the first time since the seizure we are moving forward and not backwards. 

 

 

 

 

 

 

Have a great night everyone!!

 

 





Settle down, it'll all be clear Don't pay no mind to the demons They fill you with fear The trouble it might drag you down If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home

 

     Wow!!  These past few months have been very rough for me emotionally.  I feel like I'm finally getting back to myself.  Not that this is ANYONE'S business but I will say this I have decided to start seeing someone for my "demons" that I can't let go of.  You might ask why I'm telling the world and it is because I'm having issue with the fact that I need to talk to someone and I know with every one's support I can do it.

 

     The past month has been especially miserable.  My marriage to my best friend has taken the worst hit.  You know I hear on a daily basis how perfect Shawn and I are together and as true as that is the past few months have been hell on our marriage!!  Neither one of us sleeps any more, we are constantly at each others throats, and everyday I think of a new creative way to make him miserable!!LOL!! 

 

      I'm not too worried about it, at the end of the day we both love each other like crazy and we WILL work it out.  So in case any of you man stealer's get any ideas out there he is still off limits!!LOL!!  At the end of the day Love is all you need and I know this is a temporary thing and we do love each other and things will work out.  I'm just trying to be "real" with my current situation. 

 

 

    I got a phone call from Vanderbilt today and we had an appointment scheduled for September 14th and apparently the Dr that was going to see him reviewed his file and called his normal neurologist they decided it was not in Braydon's best interest to be seen by anyone other than HIS Neurologist.  So I thought for sure they would tell me October or something equally asinine, but they surprised me with this Thursday at 11:30am.  I'm so excited however last time I got excited to see his Dr.  they called me that morning and cancelled, so I will hold my breath until we actually see the Dr.  This is his first time seeing the Dr since his initial diagnosis!!  WHEW, I'm ready!!

 

     So the title to this post is a new Song by Phillip Phillips called home and I'm going to break down what it means to me....

 

 

 

Settle down, it'll all be clear  -Just wait and the answers will come, and if you need help find it!!

Don't pay no mind to the demons  -Know that everything will be ok, and when I have the thoughts that they wont, ignore them!!  Everyone has their inner Demons.

They fill you with fear  -Don't let it fill you with fear

The trouble it might drag you down -Which is what I have allowed my life to be, drug down!!

If you get lost, you can always be found -I'm in the process of being found!! 

Just know you’re not alone-My friends and family will never leave me alone, and I just need to remember that
Cause I’m going to make this place your home-It will be better

 

 

      So homework for all you out there!!!  If your struggling with your "inner demons" how do you fix them?  Is it a quick snap out of it?  Do you need to go talk to someone?  Can you find a song that you relate to and it helps snap you out?  

 

 

     I wish everyone out there the best of luck and I know this is just a temporary bump in my life and I thank all of you for always being there for me!!  As much as I would LOVE to throw myself a complete pitty party the reality of the situation is my problems are small in the grand scheme of things.  As much as Epilepsy has messed up our lives at the end of the day it has not destroyed it.  Luckily our peices can be put back together when so many families are just destroyed.  Im lucky, I have a husband who loves me, two amazing children, and the best support system ANYONE could ask for.  Im thankful that I have the means to talk to someone about my problems and husband who wont give up on us.  I will keep you guys updated on Braydon's progress and Mine!!!  Wish us luck!!

Parents can only give good advice or put them on the right paths, but the final forming of a person's character lies in their own hands.

1st Day of School!!  2012

So we survived a crazy week and the first day of school and to make it that much better as of yet I have not had to serve a single day for Jury Duty!! WHOOP WHOOP

     My babies are growing up so fast!!  Poor Braydon has kind of grown up with us!!  We weren't exactly "ready" for a kid when we had him.  So this post will be a bit of a letter to each kid.  Maybe one day I will even let them read it!!

     Braydon,

           You are the strongest most amazing child I have ever met.  You will never understand how truly special to me you are.  You came into our lives when we least expected it and you have been nothing but a blessing since that day.  My wish for you it to one day fly a plane like your heart wants.  Although rules and regulations seem to say you may never do that, I know in my heart you will.  You are an amazing kid and I cant imagine to many people telling you no!!  Your like your mother, you get what you want!!

            My only bit of advice is to always chase down and never give up on the things that make you happy, Epilepsy is a disability but it does not define you!!  ALWAYS remember that!!  Never not do something because of your disability.....push through and find a way.....never make excuses!!!   You are a fighter and I NEVER want to see you give up!!!  I LOVE YOU!!!!!!!!

     Claudia,

            Oh my precious little girl!!  You make everyday an adventure!!  You put the biggest smile on my face all the time.  You have become my best friend and I love you so very much.  You light up every room you walk in and every eye is always on you.  I cant wait to see what life will bring you.  My only hope is that it is as good to you as it has been to me. 

               I know your hope is to one day be famous and just like I told your brother never say no.  Never let anyone say you cant, because I know you can.    You are an amazing kid....and I cant wait for you to shine!!

     My family is the most important thing in the world......and I hope that everyone that reads that feels as lucky as I do in this very moment!!  If you are not happy with your life, change it.  You are the keeper of your own destiny, you are the only one who can fix it.  That my friends is my advice for the day!!