Tuesday, October 25, 2016

“...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.

Saturday, September 3, 2016

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!!!

Monday, May 9, 2016

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!!!

Wednesday, March 30, 2016

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!!

Tuesday, February 16, 2016

“Fall seven times and stand up eight.”


      I fell today.  We fell today.  As always we will stand back up and move on with life, but days like today make me wanna lie in bed and not stand up again. 

      Everything about the medical field makes me mad.  The monopoly they have on me, the costs of things, the time it takes to get answers.  I really want to scream!!!   I bombed a physical I have to have for work.  I have three months to get further testing that can go from hundreds of dollars to thousands.  Braydon had another absence seizure today that lasted longer than his normal seizures.  I really just want to scream.  I try so hard to pretend that things don't bother me, I really do.  But tonight I am defeated and bothered. 

     So lets start with B, I really have no desire to discuss my issues.  Its a STUPID issue and the government has stepped into my health care and is trying to force me to get testing I don't need.  Yeah I'm a little angry!!  So back to B....

     Got a call around 1.  He had an absence seizure that lasted over a minute.  I decided today to send him back to class (normally I pick him up) because if he is going to increase in seizure activity we are going to have to learn to adjust to it.  Unfortunately I feel like I made the wrong decision. 

     He told me walking back to the room he was extremely disoriented and struggled to walk, he couldn't get his feet to work he said.  They wouldn't go one in front of the other.  His heart rate has been elevated since he got home from school.  He was extremely tired and struggled to get back to normal after the seizure. 

     His grand mal's are normally 1-2 minutes but his absence are usually less than 20 seconds.  This one was noted at over a minute.  So I think his body is worn down and exhausted from today's seizure.  This just sucks..... a lot.  His Neurologist is worried his body is amping up for a big one and that sucks even more if it is true.  He can only go up another 500mg in meds.  He taps out at 4000mg and he is currently at 3500mg.  This is the only medication that does not affect the liver and the kidneys. 

    I just want to scream.

     But I wont.  I will plaster a smile on my face and move on just like all the other times.  I will continue to worry about him almost every minute of everyday. 

    Today just sucked.  But I am sure tomorrow will be better. 
     I'm angry today and this is just not fair.  He is such a good kid and does not deserve this.  I know I'm most upset at myself for not going to pick him up, I should have.  But we also have to live a normal life or as close to one as we can. 
    Let's hope tomorrow I can say B is seizure free for one day, next week I can say a week and so on. It will get better, I know.