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.

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. 

And now we welcome the new year. Full of things that have never been.

Good Evening Everyone

I hope your year is starting off with a little happiness.  Although we rang in the new year at home in bed half asleep, it was still a good one.  Every year I go into the New Years eve with hopes of this grand night that will be so magical and every year I am disappointed lol, one year I will get my grand magical night right?

2016, what can I say other than I am over it!  It was a miserable year from the start and I hope and pray that 2017 will be kinder on my family.  Although few positives from 2016 were my Bff getting married, announcing that she is having a baby and my two sister seemed to have a great year.  

I am so excited for the potential that  2016 has.  Braydon is sure to have an AMAZING year.  So February will mark one year that he has been a member of the Clarksville Post Explorers through the Montgomery County Sheriff office.  He will be going to Gatlinburg with a few other team mates were he will be able to participate in a very large competition among other Explorers from other locations.  Shawn and I both took time off and cannot wait to go watch him shine.  The kid cannot wait to become a police officer and I just know he is going to be amazing.  Here is a link to the information on Winterfest

 http://www.bsawinterfest.org/

Then in May he has Camp Carpe Diem.  This will be Braydon's 5th trip to Georgia to participate in it.  He was super nervous because the rules used to be when you turn 15 you become a counselor in training and he honestly said he wasn't ready for that.  As luck may have it the rules have changed and he will going again, just as a camper just the way he likes it.  Here is a link to learn more about Camp Carpe Diem.

 https://www.choa.org/campcarpediem

Then in July he will be jet setting off to Ireland.... OMG!!  He will be spending several days in Ireland, then to Wales and will finish the trip in London.  He already has his passport and all we do is wait.  He will be going with 14 other classmates and two teachers.  He will be in for a real experience.  You can learn a little about his tour and help him get there with a donation.

 http://personal.eftours.com/secure/make-donation.aspx?poid=D351539B&utm_medium=web&utm_source=paxsecure&utm_campaign=fundraising

Then Shawn and I have decided to take the kids, his mom and my mom on a cruise for Christmas next year.  Our kids are getting older and at that point will be 13 and 16 and are really going to be more independent.  We are thinking a 7 night cruise to some where warm!!  

2017 really has the potential to be amazing, especially for Braydon!!  We are currently seizure free and have been for a couple months.  We go to see Dr. Robinson in February and we follow up with his regular Dr on the same day.  Sadly the last few liver function tests have declined and they have some concerns that the medication is doing number on his liver.  So when we go we will discuss further what they think and want to do.  It's my hope that the medication just initially sent his liver into a "shock" and it has bounced back.

2017 will hopefully conclude the nightmare with Claudia's hip, well at least for now.  We are hoping she does not need the second surgery, however it is likely.  We are hoping to to knock it out over spring break since it will significantly easier on her than this last ordeal.  She just needs to get her hip shaved a bit and then she will be as good as new.  She is currently enrolled in an extra cheer squad and completing classes such bank hand spring clinic and jump clinics.  She is without a doubt not letting this whoop her!!

Here's to another year, hopefully this one a bit more healthier than the last for our family!!

Happy New Years Everyone!

“...You say to God, “I have never seen you provide for me.” God says to you, “You have never trusted Me.”

     Well today we made a "Hail Mary"pass with the neurologist.  We had Braydon start with a chiropractor in hopes that the adjustments he was giving Braydon would affect him neurologically.  His Atlas at the base of his skull was out of place which is common in children who were in the birth canal for longer periods of time and he was.  Dr. Jeff (chiropractor)  popped it back into place and we've had a few visits with him.

     So lets start with the positive in all of this.  Dr. Jeff and his crew at Source chiropractic really cared about Braydon.  To win me over, all you have to do is care about my kids and he did.  He is so excited to see the results of this and see what we can accomplish with this care.  He spent so much time asking his whole history and asking questions about his condition.  Another positive is Dr. Robinson-Shelton (Neurologist) is pregnant and so very adorable.  When she has this baby boy and is totally in love with him while she is on maternity leave will suck, I'm used to her being at my fingertips, but she was glowing and I am so happy for her.  She is going to see us in four months as apposed to the normal six months so she can see us again before she has the baby.  Another plus, she always remembers us.  She always ask where Claudia is when she is not there, she asked Braydon about his academy classes, etc.  Again..... all you have to do is care for my kid and you win my heart.

    The negative, well Dr. Robinson Shelton said there is no chance that the chiropractic work done will help with his seizures.  His type of epilepsy is deep inside the brain and an adjustment will not help.  She did tell me to continue to take him, because the atlas being out of place can cause other neurological issues like headaches.  I have still insisted on an sleep deprived EEG because I need to know that it wont help, I need to see it.  I'm not sad, slightly disappointed, but not sad.  I got emotional this am at the thought that this could be the end of this nightmare, however I was quickly snapped back to reality and realized its just not that easy. 

     We had our first Depakote blood panel.  She will call me with the results, however I have instant access to them and so far they are not looking great.  Some of the liver levels are high, blood glucose level was high again, and he has been super sleepy which has her concerned.  He sleeps a lot and Ive learned that could be a liver symptom.  Who knows, she may tell me the levels are fine and she expected this starting the new meds!!  Just have to wait to here from her. 

      So we will schedule the EEG for asap, cross our fingers and hope and pray.  Today I am going to choose to trust.  Sadly as a christian I usually pick and choose what I put in God's hands and we should always place all our trouble and doubts in his hands.  So today I am placing this in his hands and I am know he will provide, may not be the way I want it done, but I know there is a plan much greater than me.

Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain

      Today's Post name is thanks to my sister Laurie, she was letting her children party in the rain and it made me very happy!

       Well this week was a week to say the least.  4 seizures that we know for sure and other possibilities.  While I had one the kid in the Vanderbilt ER the other kid was at the school nurses needing picked up and then there was me.  Trying my very best to keep my emotions in check and not scream and yell "that's it, I quit being mom today, call someone else".


     Let's start with Braydon and his pretty crappy week.  Monday morning happened and I immediately saw it in his face, he was pale, he was irritable, he had a massive headache, and an upset stomach.  It looked like he a had a seizure the night before.  He went to school, came home and we were getting ready to go to a football game and he gets sick(not sick sick, I'm having seizures your not catching sick).  Yup, it's gonna be a week, so we stay home from the game and hang out at home.  I noticed warning signs all week and I don't necessarily ignore them but I don't jump to it and become proactive.  It's not like I can stop them, I really cant but maybe I could have cushioned them. 

     Thursday rolls around and I get off the bus at work (I drive a small bus to take the kids to school in the am at the preschool I work at) and I notice I have a missed call on my cell.  I always check my cell after stopping the bus, it is a fear of my mine the kids will have a medical emergency while I am driving.  It is the ONLY time of each day I am not accessible by phone.  The only time!!  I immediately look up the number and it is Braydons school, I call back and they tell me he is in the nurses office.  Long story short he spent both Thursday and Friday in the nurses office with seizure activity.  Friday I was in the ER with Claudia when they called, so Lets visit that for a second!!

    Claudia, Lord have mercy Claudia!!  So lets start from the beginning.  In March she started to limp.  I took her to the Dr in April and he tells us it is a pulled muscle and gave us exercises to work it out.  Fast forward to July, she is limping worse than ever and her right foot is turning out.  Way out.  So we make a trip to Michigan and a family member tells us, ummmm nope that's not normal take her to the DR asap and demand an xray.   After we leave Michigan (After the WORST family vacation EVER) we drive all night to make it to TN (not because of her leg, other reasons) and we get home at roughly 10am.  I drove the whole night and we get some stuff done that had to be done and then I take a shower and take Claudia to Dr Care.  The woman pretty much dismisses me and I have to beg for the xray.  She was some smart remarks but I got my xray.  I could tell by the way the xray tech was looking at me something was wrong, very wrong.  They tell his she is going to require surgery and that we need to wait for her to send a consult to a local company and wait 6-8 days for them to get her in.  Um, no thank you we are going to Vanderbilt.

     I pick up my mom, call Shawn and tell him what is going on and to Nashville we go.  We walk into the ER, go straight to a room and get some Xrays.  The orthopedics guy comes in and explains Claudia has a SCFE.  Slipped capital femoral epiphysis (SCFE or skiffy, slipped upper femoral epiphysis, SUFE or souffy, coxa vara adolescentium) is a medical term referring to a fracture through the growth plate (physis), which results in slippage of the overlying end of the femur (epiphysis).  Crazy huh, well they admit her and tell us surgery first thing the am to fix it.  At this point I am exhausted and Claudia is literally "lets do this" because she had been in pain for so long.  Her surgeon comes in the next morning and he tells us the only way to correct her turned leg is to cut the femur in half, rotate it, and use plates and screws to put it together.  So when I say MAJOR surgery I mean it.  After a few more days in the hospital we go home with a new hip.  Although the pain was crazy I think in general Claudia feels much better!!  And she has a super cool story.  

      Now to this week, Claudia was having some CRAZY neurological issues.  Numbing in the head, tingling in the head, sleeping like crazy, weird head aches and even some confusion.  She really freaked me out, so while waiting for an appointment to see the Dr it got really bad so I took her into the ER.  They get her all situated and start talking to her and realize she is having migraines.  Hemiplegic Migraine to be exact and this type of Migraine actually mimics a stroke.  

    This week has just sucked, like a lot.  But with that being said, I'm alive, my children are relatively ok ( lol) and my husband is well.  Really it can always be worse, it really can.  Braydon had a new seizure med added to his medication.  Prayers for us as we introduce that.  These seizure meds are brutal on these people.  They are a necessary evil to say the least!!  Claudia is healing well and even cheering on her bum hip, which is a HUGE deal.  We are very lucky and I am blessed to have such a crazy jacked up family :)

     Have a great long weekend everybody!!!

There is never a moment when God is not in control. Relax! He’s got you covered

     Hello everyone!!  It's been a while, my life has been crazy!!

So update on my father in law.....

      Bob is currently still in the hospital.  His actual heart surgery was extremely difficult and although he came out of surgery fine recovery has been hard.  Our life has been completely upside down since March 28th, Shawn spends all his extra time with Bob (as he should), the kids have a hard time seeing him, and I have to balance the in between.  The kids are in full swing back to normal, so I spend Saturday doing our "normal" things with them and Sundays at the hospital.  The kids choose not to go, as Bob has lost a lot of weight and for a very long time was just not himself.  Yesterday both kids went ( I told them we were going to church) and Bob was doing great.  It was an amazing visit.  Claudia left feeling good because Papa looked and sounded good.  He will hopefully be moved to Clarksville tomorrow to a nursing home so he can get more rehab to get him home.  Life does not always go as planned, but it is still going so that is all we can ask for.

     Tomorrow Braydon is seeing a pediatric Cardiologist.  He had is echocardiogram and based on that his heart is structurally great.   However the chambers of his heart are not pumping the way they should be.  The fact that they got me an appointment in 3 weeks makes me happy and scared.  We see the cardiologist tomorrow and I am trying NOT to freak out......however I am mom so you can imagine how I really feel. 


     Prayers are always encouraged and welcomed.  I'm going to do my best to let go and let God, however we all really know I am spazz lol!!!  Tomorrow will be SUPER busy Cardiologist at 1, a lawyer appointment (things with my family, helping someone help no worries) at 2:30 and then Claudia and I head to Nashville for a date with the Pentatonix.  She is SUPER excited so I am too!!  If I don't update tomorrow no stresses,  I promise to let you know whats going on!!!

A problem is a chance for you to do your best.

Good morning all!!  Lots to talk about today so we are just going to get to it!!

    When did my little boy start growing up?  It's crazy but it's like I blinked my eyes and he was 5'6".  The best part is he is a genuine soul to his core.  He is very much like his dad.  I live in a grey world but to them everything is black or white, good or bad.  It's so crazy to think of him having his own real thoughts and opinions. 

     Anyways we've had a few seizures since December that have been a set back.  We have maxed out on the keppra and if he has another seizure we will be adding another medication to his day to day routine.  My feelings really are mixed on this, but at the end of the day it is what it is.  Keppra is the only medication on the market that doesn't metabolize through the liver and cause potential long term damage.  But hey, what can I do about it right?

     Dr. Robinson made us a deal yesterday.  If he goes from yesterday to his birthday in October he can get his permit.  This is what we have been working towards.  That was the best news we could have heard.  I told her we had been practicing and she was excited for him.  She is so good with us.  She puts up with my craziness and seems genuinely interested in Braydon's life.  She loves to talk to him about camp and airsoft. 

     Now on to his heart.  She is extremely concerned about his heart.  He since August has had high blood pressure and for over two years a high heart rate.  We have had test after test and they have all come out ok, but she said something is not right.  Just what we need right?  Today he goes for an echo cardio gram.  So prayers for that are appreciated.  We will be going to see a cardiologist eventually and Dr. Robinson wants a stress test.  So we will see how all of that plays out. 

     The real stress of today is my Bob.  Bob is my husband's step dad.  My husband's best friend.  My children's PaPa.  An essential person in my life.  A little story for you.  So I was in labor with B and it was horrible.  Miserable!!  I had some bad back labor and he was holding my hand.  Tears started to stream down his face.  He kissed my hand and told me he was sorry but he couldn't stay, it was killing him to watch me be in so much pain and that he needed to leave.  He loves me and my babies more than I think I could explain in words. 
.
     My Bob is having a bypass surgery today.  We need all the prayers you can muster.  The kids got to see him yesterday, but when he comes out of surgery he will be on a ventilator for  while so I'm not allowing the kids to see him for  few days.  My children are currently a wreck.  Braydon is shutting down and Claudia (although is acting tough) is internally breaking down.   We've put it on God's hands and I am trusting him to know what is best. 

    Thanks for all the prayers!!

FYI I did this on my tablet so if there is a ton of typos....... sorry!!