Thursday, June 28, 2012

I have found that if you love life, life will love you back

     Super pumped about taking Braydon to Carpe Diem.....his Seizure camp.  YAY!!!  I got the confirmation email a few days ago stating he should be recieving his welcome to camp packet!!  Most importantly he is SUPER pumped!! 

     After much debate we are going to leave on Friday July 20th after work so we can have ALL day Saturday in Altlanta.  I think we are going to go to the Aquarium, American Doll store and then LEGOLAND!!!  A perfect day of family fun before we have to drop B off on Sunday.  Non the less all with my BFF Chelsie!!  Who will glue me back together once B is offically dropped off for the week!! :)

     For the record the kids had a BLAST in Gatlinburg!! Everything went perfect and I could not have asked for a better few days for them.  My sister and mom were amazing  and I am so very grateful that they took them for a few days.

     Shawn and I are about to take a few days off from work and we are going to do a "staycation" with them and Im excited.  We are not really taking any real vacations this year.  life has thrown us such a curve ball we are having a hard time recouping from it.  Hopefully next year we can recover a little better!! 

  Wont be on for a few days until we are back from the staycation.....Thanks again to all my faithful readers!! 

Wednesday, June 20, 2012

You have to love your children unselfishly. That is hard. But it is the only way

     My precious cuties are about to leave for a few days to Gatlinburg with their Grandma to spend some time with their Aunt Laurie, Uncle Wayne and cousins.  I am having a much harder time than I ever thought I would with this.   My whole body is a bundle of nerves and I cant shake it.

     This is not the first time they have gone away with out me, however it is since Braydon was diagnosed.  So many thoughts are crossing my mind right now.  I know that this is not a "burden" on anyone to have him go with them however I am not naive in the fact that this is an added stress.  My wonderful sister is an AMAZING nurse and is very familiar with all his meds including his emergency meds which makes my stress seem silly, however it is still there. 

     Making sure he goes to bed early enough, that he is well hydrated, and not hungry seems easy enough however when there are 5 other children around and they are to busy to sleep, eat, and drink it tends to make life a little more difficult.  My other issue is he will be 5 hours away.....which in an emergency will feel like a million.  Hopefully and more likely than not there will be no emergency but I always seem to plague myself with the "what ifs" in life.  I'm a planner and some things that surprise me can really throw me for a loop. 

     My problem really boils down to control.   I, even though I don't act like a control freak, deep down I am.  I know it and it is so hard to relinquish control and I know I need to be better about it.  So how am I going to fix my nerves you may ask...Friends!!!  I have friends who are going to keep me busy!!  No matter how old, you always need friends.  Dinner Saturday night and shopping Sunday what a better way to distract yourself right?

    I was talking to the BFF Chelsie today and I asked her when I was venting all my irrational fears about this trip "What would I do if there was an emergency in Gatlinburg?  Would I just jump in the Car and drive?"  and her response was "yes WE would get in the car and go"  not you would but WE would........meant the world to me.

     Best part of all of this......Braydon has no clue I'm scared to death and is SOOOOO excited.  Which makes all my crazy tension worth every second.  Cant wait to get excited phone calls about all the cool things they did, who did what to who, and how exhausted he is.  Guess this is just preparing me for camp in a few weeks!!!

                       Until next time guys!!!!!!!!!

Friday, June 15, 2012

UPDATE: 6/15/2012 Summer Camp

Nurse Palmer just called and she said Dr. Cuevas said YES.....just like I knew he would!! YAY!!!!  I emailed the camp director and let her know so he should be all set!! YAY!!!!  He gave me some restrictions to place on him over the next few weeks and some new "rules" to live by but that I can handle!!!!  Thanks for all the thoughts and prayers over this it means the WORLD!!!

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!!

Sunday, June 10, 2012

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!!


    Sunday, June 3, 2012

    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!!