We worry about what a child will become tomorrow, yet we forget that he is someone today

     What a rough emotionally draining day!!  We got the phone call at 8:36am that Braydon's Dr. was called away to an emergency and would not be able to keep his scheduled appt.   I cried like a baby........I was so ready to see the Dr and discuss all the things that are going on and I did not get my minute to talk. 

     So we had to call the Nurse and ask about Seizure camp, I was due to call today with an answer to let them know whether or not Braydon would be able to attend.  Braydon's nurse Palmer was an absolute saint and said to hold tight she would get me an answer.  She called back and asked that we come down and see the nurse practitioner and see if we could get her to give us a yay or nay.  She would not be able to answer my long list of questions but maybe just maybe allow us to go to Carpe Diem. 

     Braydon had an Absence Seizure in the office while the nurse was examining him and with a heavy heart the Nurse Practitioner said no.....without the consent of the Dr. she did not feel comfortable signing off on anything.  The frustrating part is I KNOW Dr. Cuevas will say yes he can go....I just know it. 

     Nurse Palmer being awesome like she always is called the Seizure camp and got us an extension until Monday, hopefully we can at least get the Dr. to say yes over the phone.  That's all we need, Palmer said she would type everything up if says yes. 


    So after waiting for forever we left the office with no answers and headed to the Zoo.  The kids had no intention on looking at animals we just played in the jungle gym.  My heart aches for B.  He has been so tough and brave through all of this and if I'm not careful he will become jaded.  He is far to young to be jaded.  He is by far the bravest person I know and I hate that the poor kid is cut off at every turn.....and he still smiles. 

     As soon as we have news I will update everyone!!  My blog has been viewed A LOT and I appreciate all the support we recieve from everyone!!

Dream and give yourself permission to envision a You that you choose to be.

Good Morning ALL!!!

     A quick shout out to the husband today!!  Happy 30th Birthday Shawn Phillip.  You are an amazing man and one of a kind.  You wow me all the time with the wonderful things you do and continue to do for our family!  I love you more than you will ever know!

     We go back to see B's neurologist on Friday.  I'm very ready to see him.  I feel as though our diagnosis was so quick (which I am grateful for) and now that I have had a little more time to digest all of it I have a million more questions.   I'm just dying to know if he will grow out of them....which is not something the Dr. will be able to tell me I know.  He does not know if he will...I just want to know. 

     To many unanswered questions with Epilepsy.  Here are some epilepsy facts some of you may have never known, some things I have learned over the past few months. 

 A seizure is a disturbance in the electrical activity of the brain. Twenty-five million Americans (1 in 10) have had, or will have, at least one seizure at some time in their lives.

Epilepsy primarily affects children and young adults, although anyone can get epilepsy at anytime. 20% of cases develop before the age of five, and 50% develop before the age of 25. However, epilepsy is also increasingly associated with the elderly, and there are as many cases in those 60 years of age and older as in children 10 years of age and under.

Heredity usually is not a direct factor in epilepsy. But some kinds of brain wave patterns associated with seizures do tend to run in families.

Tonic-clonic ("grand mal") seizure - This seizure occurs when there is a massive discharge of neurons on both cerebral hemispheres. The body becomes rigid and there is also jerking of the body. "Tonic-clonic" means "stiffness-violent." "Grand mal" means "great sickness."



Absence ("petit mal") seizure - This seizure is nonconvulsive. However, a person may become unaware of his or her surroundings and may stare off in space or freeze. This seizure lasts only 5-30 seconds.

Many famous classical writers had epilepsy, including Sir Walter Scott, Edgar Allen Poe, Lord Byron, Percy Bysshe Shelley, Lewis Carroll and Charles Dickens--to name only a few

     Well I am off to celebrate the Birthday....sorry so short but to be honest I'm ready for Friday and don't have much else to say!! 

Carpe Diem everyone!!



Any change, even a change for the better, is always accompanied by drawbacks and discomforts

Good Morning everyone!!!

     Summer is in full swing at the Fowler household!!  Trying to enjoy every moment of everyday!!  Hope all my friends out there are doing the same.  It looks like today is going to BEAUTIFUL and I am super excited about it. 

      A quick update on Braydon-  They uped his meds again after the very obvious absence seizure last Friday.  We are now taking 875mg twice a day.  Earlier this week he got very very dizzy and fell down a few stairs hitting his head on a chair behind him.  Very SCARY!!  However he had a GREAT week at LCSH and had lots of fun.  Glad we have a summer to work through this, not sure we could have handled any more pressures of school until we get all of this a little more under control. 


     Life is resuming around the Fowler house.  Thankfully.  We are trying hard to not let all of life's changes bring us down.  I hope all of you do the same!!  Change is hard and any little change can set you off.  I have gotten much better over all these years with change but I am still not 100% at it!!LOL!! 


      Everyone get out of the house today and do something outdoors.....looks like it will be amazing!!

The best way to find yourself is to lose yourself in the service of others.

Happy Memorial Day Everyone

     Just wanted to give a special shout out to those who have fought for this country, those who are continuing to fight for our country and those that have lost the battle.   A lot of very special men in my life have fought for this country, some have passed other are still alive.  Thank you so very much for all you do for me and my family.

     

     The house is so very quiet right now!!  I forgot to turn off my alarm last night before I went to bed.  It is automatically set to start on Monday's so it woke me up!!  Oh well, at least I already have dinner in the crock pot and can start on breakfast.  Trying to decide how to spend the day today!!  Poolside?  Waterpark? Zoo?  Too many options!!  Went to see MIB III, it was awesome and B and C were SOOOOO excited to see it!!  Got to hang out my with one of my favorite families the Barrett Babes!! 

     Friday we went to a Nashville Sounds game.  It was so much fun and very affordable for a family.  At the end they had an amazing fireworks show and let the kids run the bases.  The kids thought that it was the best thing since sliced bread. 

     Absence seizures....UGH!!  So when Braydon was diagnosed with epilepsy the Dr.  had a strong suspicion that he has had absence seizures that have gone unnoticed the majority of his life.  Well to be very honest with you I believed him.  We have been told by so many teachers that he zones and they thought he was ADD and that he couldn't pay attention.  Well when the Dr says this it all makes a little sense.  However I had never actually seen it, so maybe just maybe these people were all a little crazy and there were no signs of these Absence seizures. 

     UGH....NOPE they were right.  Driving to Nashville for the baseball game he sure as heck had one.  Claudia had fallen asleep and Braydon had gotten very quiet.  So I look back and he is sitting straight up, head was limp (it almost was falling backwards), his eyes were WIDE open and it was like he was looking through whatever he was looking at, he was making a strange sound (almost like a muffled whine, I had to turn down the radio to hear it) and was drooling.  I started to scream his name and he shot up like a rocket and starts screaming at me like a lunatic.  Said " Why are you screaming at me, I was starring out the window!"  he had NO recollection of the event.  NONE!!  From what i have read this "episode" might have been a little of an extreme one.  Most absence seizures will go unnoticed. 

     How much of his life will he loose as a result of Epilepsy!  It is a scary thought to me that he just misses seconds of his life.  I know once we get all the meds figured out the likely hood of all this will be slim and I am so ready for that day.  We go back to the Dr June 15th, I think we are going to need to do a sleep study that we have been avoiding  like the plague!! 

     But all in all he had an amazing first week of summer!!  We kicked it off with a Baseball game, swimming on Saturday, Movies on Sunday and today who knows..................

Until next time everyone!!!!!!

"Our lives begin to end the day we become silent about things that matter."

     It must be a rough week if I am blogging in the middle of it right?  It actually has not been a rough week I just am having a wee bit of a pity party and would like to share it with everyone.  Every week cant be amazing....unfortunately!!

     I got a call from Carpe Diem yesterday.  That is the seizure camp for children.  The one that Braydon is supposed to attend in July......Well they are not sure if they are going to allow him to come.  The Board of Medical Doctors reviewed his case and they are not sure if this summer would be a good year for him.  They are concerned about the severity of the seizures, the frequency of the seizures, and being so newly diagnosed.  I have decided to not tell Braydon until we know for sure.  All he has talked about is summer camp.

      We actually decided to send him to summer camp this year before the Epilepsy.  He has been begging for years now and dad and I decided in December this would be the year.  So we started to do our research.  I wanted him to go to space camp in Huntsville and dad said OH NO to far away.  SO we started to look and then Epilepsy came into play.  Thanks to a great friend I got the idea to find him a camp that would remind him that he is a normal kid.  Finding a camp was not easy.  Epilepsy was not a word I heard a lot until Braydon was diagnosed and we still have not met any other children like him.  I know they are out there but none that I know of.

     So what better way to shed some light on his Epilepsy than sending him to summer camp for a week with children just like him.  It is super cheap, Doctors who specialize in his seizures, nurses and a staff that have dealt with seizures multiple times.  SCORE!!!   So we sent all of our paperwork in and ready to get our starting packet.  This took some convincing of Dad, the Camp is in Georgia!!  He was not OK with it.  But I explained how important this was to our family.  Not just Braydon, we all needed him to be happy if only for that week.  This medicine has made him a wee bit moody and we have a hard time finding Happy Braydon sometimes.  So dad agreed!!

     Now we have to wait and see if Braydon's neurologist agrees with us.  He has next appt in a few weeks and we have to convince him that this is in Braydons best interest.  I really hope that he agrees.  I cant look at that poor kid and tell him yet again he cant do something as a result of Epilepsy.  How hard would it be for him to understand that the Epilepsy camp wont take him.........


     Again like I said a bit of a pity party this am....but feeling better already!!  Just getting my feelings out there makes biggest difference!!  Thanks for all the support from everyone!!  It makes this so much easier!!

Do not go where the path may lead, go instead where there is no path and leave a trail

Good Morning Everyone!!  It has been a while since my last post.  Life has kept the Fowlers Busy!!  Today I got up before everyone else so I have a few minutes to catch you up on the past two weeks!!


    The week before last was field day!!  Wow did Braydon have fun.  It was hot so we only let him participate in half of the day but he really enjoyed it.  When we got in the car to leave he said he felt normal for the day.  It has been a very long time since he felt normal and that warmed my heart.  Here are a few pictures from the day!!

    So as you can see field day was a success!!

     Claudia had some exciting news the other day as well!!  She was the proud owner of four baby ducklings for the night!!  She amazes me so very much.  She is in 2nd grade and since she was in pre-k she has told me she wants to be a vet when she grows up.  I truly believe she will be.  It is amazing!!  She loves animals so very much.  So they hatched baby ducklings in her room and her teacher allowed us to take them home for a night.  WOW we had so much fun!!  Here are some pics from that!!

Such a proud little duck mommy!!

     This past week has been very busy at work so nothing fun on the home front to talk about there.  Mothers day was a good day.  The husband got me a very very cheap and very very thoughtful present and I appreciate it so very much.  Money is very tight for the Fowlers but the fact that he thought of something so sweet makes me feel very loved!!  :)

     Braydon has been talking about joining the army a lot lately.  He seems very interested in it.  However he recently changed to the air force.  He wants to fly plans.  I have not had the heart to tell him that will more likely than not never happen.  It is so hard to hear your child strive for a dream, give his sister flying lessons, pretend the car is a plane he is flying when we get in it, and know that it will only ever be a dream. 

     Guess I am going to go get ready for yet another busy weekend!!

A successful marriage requires falling in love many times, always with the same person

     I have spent a lot of time focusing on Braydon and the kids in this blog, so today I will focus on Shawn and I.  Those that are close to us know most of our stories, however I am captivating a new audience with my blog so I thought I would tell old stories this week, particularly about the man I fall in love with almost every single day.  I said almost.....Im not that blinded by love there are some days I'm ready to kill him!!!!

     It is the summer of 1999 and I was being forced to get a job.  I had failed a few classes in high school mostly for doing things I shouldn't like skipping school every chance I got and they were allowing me a work study program that would allow me to make up those classes.  SO the first place I walk into they offer me an interview without filling out the application and after the interview asked me to be there at 3 the next day.  WOW....was I that cute or were they that desperate?  Let's go with cute getting a big head is never my thing!!  I was now a green shirt, khaki pants, and visor wearing subway employee....YAY <--------enter sarcasm, in high school that uniform did NOTHING for me!  It was horrible!! 

     SO on my first day of work I go in scared to death.  I walk into a very skinny boy on the back of a girl.  I was ready to puke when the girl looked at me and said " Hi I'm Kim I work here too and this is MY boyfriend Shawn".   Shawn then looks at me and says he will be training me tonight and all I can think is OH LORD.  I will tell you though it was NOT love at first sight.  Not sure if the fact that his girlfriend also worked with us was part of that or what but I had no immediate feelings.  His girlfriend leaves and I realize there is another employee there, Johnathan.  Johnathan was also a new employee and Shawn was being stuck training 2 brand new employees on a Friday night our busiest nights!!

     Needless to say Shawn was a little annoyed and had very little patience in the training department.  He kept sending me in the back to get things and of course I had no idea where it was.  The night went on forever and I had noticed that Johnathan a time or two would follow me into the back and intentionally trap me in awkward positions.  One time I almost had to climb over the ice machine to get away from him.  So it was raining when it was time to leave and Johnathan tells me his mom hates to drive in the rain, could I take him home and of course I say yes.  We get in his drive way, he tells me he saw how I was looking at him all night and pushes me against the driver door and attempts to stick his hand down my shirt.  I called him a few choice words advised him to get his hand out of my shirt and told him to get out of my car.  WORSE first day EVER!!!!!!!

    I cried the whole way home and begged my dad to quit and he said only if you can still graduate without the job and I couldn't so I didn't quit.  The weeks flew by and Shawn and I became really good friends.  I loved working with him, he always made me laugh.  One day his mom came in and she though Shawn was working and he wasn't and we were NOT busy and she asked if I wanted to eat with her.  So I made our subs and sat down.  She asked me if I thought Kim was right for Shawn and before I could think twice about it I told her "No, I'm going to marry him someday".  I could not believe I had said that she probably thought I was a LONEY TOON!!!  Not long after that Shawn and Kim broke up and that begins our "love story".

     I can remember one night late at night swimming in the pool with my step mother.  She was asking if I "liked" anyone and I said Shawn.  He was UNLIKE any other boy I had wanted to date and to be honest very dorky!!  But I just liked him, nothing could explain why or what made him so attractive to me.  So we continue to work together and I notice he seems more and more annoyed with me.  Putting his hand on my back and kinda pushing me out of the way while we were working together, I was getting very very annoyed.  I spent weekends that I was not working with my mom.  SO one weekend he kept sending me pages (yes this is when beepers were cool).  Well I didn't call him back he was being funny around me and I didn't care to talk to him.  That next week at work he kept asking why I didn't call him back and I told him I was busy.  I had a date while I was ignoring his phone calls and I told him I went out with someone.  Let the 20 questions begin......

     "what is his name?  Why do you like him?  When are you going out again?"  OMG it hits me He likes me....SCORE!!!!  SO the following weekend I get someone to cover my shift and I plan to go out of town with my Dad.  We were going to go camping, he loved to camp.  The boy I was dating at the time won me a fish at the county fair and I asked Shawn if he would "fish sit" while I was camping.  He said yes I and got him the fish on Thursday and on Friday I woke up with a fever and a horrible cough.  I had an upper respiratory infection.  We did not go out of town and spent the next two days half dead on the couch.  Sunday morning I called him to tell him I never went of town I was sick and asked him if he could bring me the fish.  He had killed my fish.............    He says that the fish choked on a rock........  not really sure how the fish died but convenient that it was a present from another boy and now it was dead!LOL!!
      He started to panic when he heard how upset I was.   He asked if he could come and pick me up and take me to buy me a new one.  I asked my dad who was not all that thrilled because I had been so sick but after a little begging he agreed.  A little while later he picks me up and we go to a pet store.  I pick out a beautiful Betta fish and we go home.  We get it home he walks me in and goes to leave and just walks right out the door.  No hug, no kiss, NOTHING!!  I follow him to the car and we talk, after a few minutes he says he has to go so I pinned him against the car and kissed him.  If he was not going to make the first move I was!!!!!

      We went out a few times after that but we were not "boyfriend Girlfriend" and I wanted to be so I asked him if we were "exclusive" and his answer was " I think we should keep our options open".  Talk about ready to kill someone, I thought I was going to punch him square in the nose.  So I started dating other people that was much better than physical violence!!:P  One night while he was working and I was off, one of my dates and I stopped in Subway for dinner.  I realize that was a shady move but hey it worked!!  He pulled me to the side asked me why I was on a date now we were supposed to be going out after he got off work and I calmly said "I'm keeping my options open".  Needless to say he shut down ALL options!!!LOL!! 

      For the record I killed the fish Shawn bought me to replace the one that he killed!!  We have never done things the "right" way but we continue to do things our way.  I love him and I hope that we continue to make memories......I could write a book with all our memories now!!