Saturday, March 31, 2012

Getting back to normal

      This week has been a good week~!~  Braydon was able to start climbing again on the playgrounds and I'm confident that he will be OK.  Other than a MILLION car problems, things are OK.  Ive had a ton of people tell me in the past few days "just buy a new car!"....Please let it be known that is a ot easier said than done. 

      We are not rich and just in the past year or two really dug ourselves out of a BAD debt problem.  Every bit of what savings we have now is going to medical bills and I have no intention of racking up more debt anytime soon with a car.  Before the seizure we were considering, hell even wanting It is just not smart for us.  I have a very wise friend who has taught me alot about $$ and I'm sticking with my gut and doing things the smart way.  I'm going to work my butt off, do extra jobs, and build our savings back up and then I will buy that car.  I'm sure by then it will feel so much sweeter!!

     On a side note my favorite part of the year is slowly creeping around the corner!!  St. Jude annual fund raiser!!!  WHOOP WHOOP!!!!  It feels SOOOOOO good to be a part of something so very incredible!!  In the past few years we have raised enough money to provide a pediatric ICU for two days while a child receives chemo.  That is amazing to know that I have been a part of something so very important.  If you would like to help or know someone that would like to help let me know!!

     Cheers to a good weekend.....hope everyone has an amazing few days!

Monday, March 26, 2012

Ready to talk about it........

     Okay not 100% sure what happened between last week and today but I'm ready to talk about the day Braydon has his seizure.  I know I have talked about it, however no one, not even Shawn knows how I truly felt and the thoughts going through my mind.  Those untold thoughts are eating at me and need to be let out, just not ready to talk to any one person about it face to face, so I'm going to tell everyone and anyone who will listen in a blog.

     The day was BEAUTIFUL!!!!!!!  It was so sunny and warm and I was eating up the sun!!  I could not wait to take the kids to the park so they could play.  I got some serious sun and they left tired, everyone was happy!!  We went shopping and bought some skeletoes for the kids, got some ice cream and headed for the park.  Shawn was at the shooting range with his BFF Aaron and his wife Michelle and myself hung out for the day.  Michelle and I sat on the little parents bench and to be honest I have NO CLUE what we were talking about.  You learn how not important some details are in a story like this.

     As we were sitting and chit chatting, you know what all us women do, a lady frantic comes running to the bench and says "A child has fallen and is having a seizure does he belong to anyone?"  Please understand when I say heart was in my shoes.  I jumped from the seat leaving behind my two favorite items, my coach purse and my camera and ran like my life depended on it.....cause at this point I thought it did.  The "he" she was talking about was my Braydon and I knew it.  So as I am running I ask the lady for a description of the child and she says " A boy 10-14 years old"  and my knees got very very weak.

     As I am running around a corner I saw the blue and black sckechers that I fought with him earlier that day to wear shaking.  At this point all I could see was the shoes.  I round the corner and there is B, unconscious still shaking a bit (but the large part of the seizure was over), foaming at the mouth and I lost it.  My knees went weak and I screamed at the top of my lungs, I did not know what else to do.  My thought when I saw him was that he was dying.  With Claudia the thought of her actually dying has never gone through my head.  The girl has been overdosed by a Doctor and quit breathing and her airways shut closed and Ive NEVER had that thought with her.  But with Braydon at that exact moment I really thought he was dying. 

     I could not think straight and I thought the last time I would see him alive was him running into the playground laughing and smiling.  Luckily I snapped too pretty quickly and began the normal "me" stuff and shouting orders to people and yelling for people to do stuff while I thought of the MILLIONS of reasons this could be happening to him.  That is what I do when I can think, I over think......I'm one of the best at it!!!  Once the ambulance was there and they loaded him up I was much better.  I still had not talked to Shawn but he was meeting us at the hospital, one of the many orders I shouted out.  So we get in the back and all loaded up and I did what I do best.....I started making jokes with everyone involved.  Once I got my head on straight I made my first phone call, my mommy!! 

     I tried so hard to be a "big" girl and not cry and stay calm.  My poor mom was flipping out and I knew I needed to put on my happy face and forget ALL the earlier thoughts.  So on the ambulance ride to the hospital I called her and told her.  We got the hospital and they opened up the ambulance doors and there was my poor poor husband, he could barley stand on his own two feet and was a bigger mess than me.  So yet again I stayed strong, trying my hardest not to break down. 

     We made it through this as crazy as it may have been and Braydon is doing AMAZING!!!  But I have never been so scared my entire life........and I remember it every minute of every day.  I kiss him so much more, both kids actually!!!  My mind was changed in a quick second........


Wednesday, March 21, 2012

The best thing about the future is that it comes one day at a time.

Well, knock on wood, we made it two full days at school!! Whoop Whoop!! We are feeling "normal" again and it feels great!! I'm not naive and I do realize this could change at the drop of a hat, however I am enjoying this moment. A very productive day at work puts me in a good mood. I'm starting to get excited about our trip to MI. I was dreading not so much the trip but everything that goes with a vacation, but I feel confident and able to handle it. I'm ready for a weekend away!! I'm going to bed with a clear mind tonight and I feel great!! Everyone have a great night, love you all!!!

Monday, March 19, 2012

Patience.....can you buy it somewhere? Maybe Walmart??

     So we did not make it a full day today at school :( !!  But again let's start at the beginning of the day!!

    Woke up ready for the day, it is Monday so it automatically sucks by default!!  Spoke with the school nurse several times, just to go over everything making sure we are on the same page.  I can tell you that everytime the phone rang I just knew they were going to tell me he needed to go home.  We have not returned to "normal" routine since the siezure and I was really hoping this week would start off steady.  SO I get through two conversations and everything seems good and then the phone rings at 11:48, which ironically means he made it the "full" day and would not be counted as absent. 

     Luckily Shawn is off this week and he went up to the school to check on him.  They deicded it would be best to send him home.  Headaches, dizzy spells, and his legs falling out from under him are the reasons for him being sent home.  All valid reasons however if this is something we will have to just live with he cant be sent home everyday!!  So is this his new "life" or has he learned how to go home early from school??

     Braydon has NEVER been the child to "milk" things.  He has always been the one that you would never even know was sick because he just did not complain.  So I asked him several times if he is scared to have another seizure, thinking maybe that all of this is him just being afraid.  He has told me several times "Im not afraid of having another seizure, Im scared of waking up from one and you not be there!".  So is he being a little dramatic about his "symptoms"?  Should I take everything he says seriously? 

     We have spoke with the nurse at Vandy trying to get some answers, however as most of you know it is not easy!!LOL!!!  I called at 9:30 am to the Dr, got a call back from the nurse at 4:30 pm who informed me she needed to speak with the Dr about the things I was telling her.  So she would have to call me tomorrow.  SO hopefully tomorrow I will be called back with the magical words.....this was all a dream and you may wake up now!!!  Guessing that will never happen but a girl can dream right?
      On the plus side I was able to pick up his emergency meds in case we need them.  Walmart got it right this time and their little screw up gave me a chance to find a coupon and I managed to get $60 off, so that kinda rocks!!!  Negative is that Shawn and I are at each others throats!!  We are both control freaks and having ZERO control over this whole situation makes us both hateful and snappy!!  Maybe taking this trip to MI on Friday will remind us we are a normal family and things will go back to normal!!

     Thanks again to everyone for their patience with could have been better......tomorrow will be awesome......and the rest of the week we shall see!!!!!!!

Saturday, March 17, 2012

Life is not measured by the number of breaths we take, but by the moments that take our breath away

I had someone point out to me that no one really has a "normal" life.  It got me thinking......there is no normal.  Every person I know is as far from normal as it gets, heck this picture is me and my most favorite people in the world....AT WORK!!!!!  This is the "norm" for us!!! 

     So that brings me to friendship.  I know how did I jump from normal to friendship?  Because I'm not normal and neither are my friends......and we love each other no matter what!!  I want to talk about my friends for a minute, this is the whole point of today's post.  I need to throw a few shout outs to some people who have truly changed my life for the better simply by being my friend!!! 

     So I'm going to start with Chelsie.  You truly are the best person I know.  You make me smile when I want to scream and you ALWAYS listen to me even when I'm probably wrong!!  You are beautiful inside and out, I could not imagine these past few weeks without you.  I'm honored to call you my friend.  I do love you!!

     Carlee, my dear sweet Carlee!!!!  You are a mommy now so our friendship has changed in the fact that we don't always see each other when we want to.  But our bond has not, I know at a moments notice we would drop anything and everything to be there for each other!!  I love you and I am so proud of the mommy you have become..... p.s. kiss Logan for me and tell him Bub loves him!!

     Oh Kelly....we have already been texting this morning!!LOL!!!  Wow our relationship has just gotten insane since we met!!!  We were immediate friends and have been constant in each others lives since day one!!!  You are an amazing friend and now a part of my family!!  I love you and your girls, never forget that!!

     Now Debby and Lori!!  You are my family!!  You have watched me grow over the years offering advice when I might not want to hear it but needed too!!  You have done SOOOOO much from my family and I would love to tell everyone, however your not the type of people who do it for the recognition.  That's makes you special, more special than you will ever know!!  I love you both!!

     Last and most important my family.  To my sisters who I love more than anything and my mommy!!  You guys are my rocks!!  Thank you for always being there to listen to me and guide me when I need it!!  We are as not normal as it comes and I love that about us!!  I love you guys so much!!!!

      So who needs normal when you have all of this???

Friday, March 16, 2012

And let the craziness begin.....

     Well today Braydon was sent home from school again.  Headache and dizziness which I am hoping is a side affect of the new meds, not an oncoming seizure.  I guess I am just going to have to get used to everyone walking on egg shells around him for a while, kinda comes with the territory huh?  I'm glad everyone is taking this so serious, it is serious, but I am ready for normal!!!  In the grand scheme of life though is there really a normal??  I know my life up until has been far from normal so why would this change anything??

     Last night we dropped off a prescription for Braydon's emergency medicine, Diastat.  It has to be "dialed" back to his dosage after it is delivered and it is not kept in stock so we had to wait to pick it up.  The pharmacist told us today at 4 we could get it.  The Dr stressed to us yesterday just how important it is for us to have on us at ALL times, cause you never know he said.  So at 4:08 I left work and go straight to the pharmacy.  I step up and the give the woman B's info and she looks at me like I have the plague and says "let me double check this for you, it looks as though your insurance information is not on this."  Well of course I know that yes my insurance info is on there, however we have an HSA and have to pay for everything out of pocket until our yearly deductible of $5,000.00 is met.....and yes I mean five thousand dollars!!! 

      She in a very very quiet voice says " That will be $314.99" like I'm going to take a swing at her for the amount she was telling me.  Now don't get me wrong I am sure she is yelled at by people ALL day long in regards to the cost of prescription, however do I really look that scary?  And if I do those of you that are my friends should take me to the side and tell me.....I wont be mad!!!  Anyways, I swipe my card and cringe all in one motion. 

     She tells me that the pharmacist would like to speak with me so I move to the consultation desk.  The woman comes over and opens the box and looks at the med and starts explaining how to administer.  So for those of you that don't know let me tell you!!  In the event that Braydon has a seizure lasting more than 5 minutes or multiple seizures in a row we drop his pants and place this syringe looking thing up his poor little bottom, push in the meds, and squeeze his little cheeks together for 30 seconds.  So in the midst of an already uncomfortable conversation she looks at me and asks me what this is for.  I explained he was diagnosed epileptic yesterday and this is his emergency medicine.  She asked if he played video games and I replied yes not realizing I was then going to receive a 20 minute lecture on how the reason he is having seizures is because I let him play video games.  So after I explained that it was genetic and under my breath I also let her know it was not her business, she realizes that the two vials I need are not set to the right dose.  He was prescribed 12.5 mg and the vials were set to 20.  So she speaks with the other pharmacist and apparently after the amount is "locked in" you cannot change it so they would have to then order a new set.

     I wait over to the side so that someone can come and explain what is going on and when we would receive his new pack.  After about 10 minutes I am told that they have to order it again and it wont be delivered until Monday......sigh.......  They took my card put my $314.99 back on it and away I went leaving at 5pm.

     Well I can say all in all it was a great day!!  I have to remind myself that some people just are rude and inconsiderate of others feelings and that those people need me more than I need them!!  I always should throw my ray of sunshine on them even when I don't want to!!  Thanks again everyone for letting me get my thoughts out....some days you just need to!


Starting a new Journey

I think in order to understand me I should share a little back history.  I wont go to far...I promise!!

     Shawn and I met in high school (16) and I fell in love immediately.  However I was a bit of a spoiled brat so our start was rocky.  When we were 18 we found out that we were pregnant and that forever changed our lives.  We did not rush out to get married, neither one of us knew if we could handle the stress of being so young with a child and married!!  October the 11th of 2001 the greatest things in the world entered our lives Braydon 6lbs 9oz of pure healthy boy!!  He was BEAUTIFUL!!!  When Braydon was a 1 1/2 we decided to get married and move away from our family in TN to FL.  Shawn had just graduated College and was offered a great job down there working with my father and his mentor.  3 weeks after moving down there my father suffered a heart attack and passed away and 1 month after that I discovered I was pregnant.  Not exactly planned however we were both excited!!  On April 8th 2004 ( also Mine and my mothers birthday) Claudia Fowler was born.  She was beautiful so perfect!!   3 days after her birth we packed a Uhaul and with the help of my mom went back home to TN.

    Shawn and I never planned our future like this however we have always rolled with the punches.  We are young parents and somethings may not always pan out, we do our very best.  Well while Braydon remained Healthy over the years Claudia on the other hand declined in the health department.  Long story short she has several small diagnosis that causes big problems mixed together.  She is asthmatic, has bad allergies, she suffers from constipation(mostly from medicines she is given) and she has acid reflux that as a smaller child she aspirated into her lungs causing lots and lots of cases of pneumonia.  She still has all of these however we finally have them all under control!!  Asthma is our worst and these past few months have been rough, but we seem to be on the up and up!!

     So why did I start this blog you might ask, well let me answer that.  We were thrown a few curve balls this week and found out yesterday that Braydon our perfectly healthy child is Epileptic.  I want to share this journey with my family and friends close and far, this seemed the best way to do that!!  I also want to make new friends some who maybe suffer the same trials as we have and will.  But I'm getting ahead of myself......let me tell you about the new curve ball and how it was thrown.....

     Sunday March 11th 2012 we went to visit friends in Murfreesboro TN, about an hour and 30 minutes away.  While down there Shawn and his Best friend went to the gun range and the friends wife and I took the kids shopping, to get ice cream and then to play at the park.  It was BEAUTIFUL outside.  We just arrived at the park and the friend and I sat on a bench outside the entrance of the play structure were there were tons of benches for the parents.  My children are almost 8 and 10 and this was an enclosed park with only one entrance and exit and I was sitting at it.  I was sure they did not need me following them around the park.  About 10 minutes after being in the park a woman came running out of the wooden castle saying there was a child suffering a seizure and I just knew it was Braydon.  I'm still not sure how I knew....but trust me I knew!!  After running through the castle I could see his little feet still shaking, he was suffering a gran mal seizure.  The ambulance arrived and took him to the nearest hospital.  After about 6 hours they let us go. 

     Yesterday we met a neurologist, who I was convinced would tell me that this was a freak occurrence and it would never happen again.  I mean all that I had read said that for every 5 children that have a seizure 3 of them will NEVER have one the rest of their lives.  Great odds huh!!  So we did an EEG and met with the Dr.  The Dr tells us that Braydon is epileptic.  He said that his brain was wanting to have a seizure the entire time he was hooked up to the machine.  This doctor said that he never diagnosis after one seizure how ever it was very apparent based on the eeg that he is without a doubt epileptic.  So what does this mean you are probably means nothing really.  With the right medications he can live a very normal healthy life.  We started a new medicine last night.  Apparently these meds biggest side effects is that they can be mood altering.  So we have to make sure that we are monitoring his mood and if this med makes him cranky we will try another and if the next makes him have seizures we will try another.  The Dr.  eased us and made me feel like this is manageable. 

       Together as a family and when I say family I mean the support of everyone we love, we will have a normal day at a time!!