Mother Warriors

My two greatest gifts - Peyton and Trace.  God chose me to be their mother and for that I will forever be grateful.  They have brought endless joy, love and happiness to my life.  They are my everything. 

Peyton is an amazing daughter, sister and friend.  I am so proud to be able to say that about my girl!  She is giving and caring and kind and beautiful.  She is a complete ball of energry and smiles.  I love her "to the moon and back"  and think I read that book to her at least a thousand times over her childhood.  I have only a few short years left with her under my roof, but will never be done being her mother.  I will make sure she continues to grow and become even better a person.  I can't wait to see what great things she accomplishes when she's All Grown Up. 

Trace is a brave, loving and resilient little boy.  He is an inspiration.  He has the most amazing smile.  I am so proud to have been chosen as his mother.  I hope to one day be able to teach him as much as he has taught me. He endures more on a daily basis than most could.  He is strong, courageous and never goes down without a fight.  I live everday to feel his skinny little arms wrapped around my neck - it is truly the best feeling.  I pray everday I may see him All Grown Up. 

I have chosen to be a warrior for both of my children.  The battles I fight for them are very different.  For Peyton I fight so that she may achieve everything she sets her mind to.  I have fought hard to make sure she has had the best life possible.  I fight to protect her from all the bad things & even worse people.  I have fought so she may learn to fight for herself.  For Trace I fight so that he may live the most normal life possible.  I fight for him to enjoy everyday.  I fight for a cure for Mitochondrial disease.  I fight for his life.  I hope to one day win.  I will never give up. 

They are my heart

Happy Mother's Day to all my fellow Mother Warriors ~

Hope, Love, Courage &Faith,

Laurie

Back 2 Square 1

I want to start this post off by being positive because it's not going to end that way.  Trace is doing great right now.  He's been at his baseline and I believe that baseline may have even gotten better than before.  For those of you in the Mito world you know it's all about that baseline.  For those of you not - it's where Trace's normal is.  It's the place we always want our little guy to be.

Now the negative.  I'm angry, so sorry if this post seems a little harsh or crazy.  I received Trace's Transgenomic Nuclear Mitome Test results Tuesday.  They were unremarkable.  Think that sounds great right??  Well not so much to me.  You see this test is something that was supposed to give us lots of answers, something I was so excited to hear was finally available.  Well we got nada!  It was a hope to see exactly what nuclear genes of Trace's were mutated, which could lead us to a more precise diagnosis and most importantly a better prognosis for what his future may hold.  We received nothing - therefore we're Back 2 Square 1.  Ugh!  I cried uncontrollably most of the afternoon and evening.  See I want to know these things.  It's just the type of person I am.  The more I know, the better I can help my baby.  The more the doctors know, the better they can help my baby.  If anyone is wondering, Yes, Trace still has a mitochondrial disease diagnosis.  This test was not to rule that out.  It was just to better help us understand more and develop a better treatment plan for him, yet we got nothing.  Most people may think this is still great, because we didn't receive some horrible news from it.  Well here's the thing, we already received the horrible news October 5, 2010 when we received Trace's diagnosis of Mito.  We still know no more than that day.  I hate that I let myself get my hopes up so high about this test.  I just want to know - is that so much to ask?

I always refer to our lives as a roller coaster ride.  I know in some ways everyone is on that ride.  However, I feel ours is a little on the extreme side.  One day we're on the way up, hang on for a couple more enjoying the ride, oh crap the bottom drops out and then everything comes screaming down hanging on for dear life.  I'm tired of this ride - can't I just get on the carousel for a while please??

Hope, Love, Courage &Faith,

Laurie

UMDF Family Meeting - Morgan's Wonderland

We attended our 2nd Annual UMDF Family Meeting at Morgan's Wonderland this weekend.  I love that place!!  For those of you unfamiliar with Morgan's Wonderland, it is a park built for special people with special needs.  Trace really showed us his physical improvements on the playground areas.  He blew my mind at what he was able to accomplish - all by himself!!  Just shows me that all that therapy we force upon him is well worth it. 

He enjoyed the sensory room even more that last year - I didn't think that was possible, but the Yeahs!, Wows!, clapping and excitement from Trace were at the next level. 

He loved the carousel this year.  Last year he liked it until it started moving, then no so much.  He rode it at least 4 times. 

He had a great time on his Choo-Choo ride.  This kiddo loves trains! 

Peyton played with Trace while we listened to the speaker, who was really informative.  Wish I could have heard this presentation a year ago.  Of course I was still in denial about Trace having Mito and this presentation confirmed it over and over so it might have hurt a little.  I still feel that denial sometimes and it did make my heart sink a little.  That only lasted a very short while though.  The facts are facts and Mito is our reality.  All I can do is work through it as best I can and love every moment with my little Mister.  

It was really a wonderful family weekend full of smiles that make my heart so happy!

This was Trace 20 minutes after leaving the park ~ I'd say he had a great time!
   

Hope, Love, Courage &Faith,

Laurie

Easter 2012

We had a wonderful Easter weekend celebrating with our family.  The weather was beautiful and thus we spent copious amounts of time outdoors.  Trace enjoyed hunting eggs this year.  It was his first time ever to hunt eggs by himself.  Last year he just couldn't, crawled to a couple of eggs and then just sat in the grass dazed.  It made my heart so happy to see him enjoy the egg hunt and of course the candy!! 

Friday Peyton, Bebe & I went shopping.  We had a great time together.  I love when Peyton & I can have girl time together!!  Thomas and Mister went out to visit his family and enjoy a crawfish boil & fish fry.  They spent the day riding the "Choo-Choo", swimming and swinging.  Trace came home extremely tired, but I guess all that fun is hard work! 

My two handsome guys

Check out my muscles!

Look who's swinging on the big swing!!

Saturday was spent with my family.  An egg hunt, lots of time in the bounce house, relaxing on the porch and great food.  Trace and his cousin had a great time boucing & egg hunting.  So much of a good time that Trace was so worn out he wanted to sleep by 6:00.  It was a wonderful day - wonderful memories made.

Sunday we went out to my grandparents farm to spend the afternoon with my extended family.  It was a georgous day again.  We haven't been to this family gathering in a few years - mainly because of Trace's health.  It was really nice to see everyone again. 

We ended Easter with a small egg hunt of our own.  Trace was a little worn out after all the weekends fun, so we all sat in the backyard and enjoyed some great photo ops.

Hope, Love, Courage &Faith,

Laurie

 

Onfi

I'm happy to report we are seeing some good things from Onfi!!  Onfi is a medication which was just released by the FDA October 2011 to treat seizures.   When we last visited our neurologist/epileptogist in March I had expressed my worry about Trace's neurological prognosis.  After a long discussion, Dr. V decided to put Trace on Onfi and titer off of Klonopin and then Topamax.  End result being Trace on Keppra & Onfi to treat seizures and to see better neurological progress.

The good results - We have seen an improvement in Trace's speech development and even some improvement in his physical abilities.  Trace is really babbling - something he's never done before.  Trace said his first two word combination a few weeks ago!  It was Oh No.  I was so proud to finally see him achieve such a huge milestone!  He also said his second two word combination a week ago.  It was Oh Sh*t.  I know I shouldn't be so proud of this one - but I am!  It may not be the best choice of words - but it is two different words together.  It's my fault, yes he repeated me.  Trace thought it was the most hilarious thing ever and cracked up after saying it each time.  This was again my fault.  Probably because I made such a big deal out of it first gasping and telling him no; but then laughing because you just can't help but laugh when Trace does, his giggles are contagious.  Another good result has been a decline in myoclonic seizures!  We had one really bad night with them where he was up from 1:00 - 2:00 AM seizing.  Not so bad in the big picture though.  Once again the fog has lifted and I see the glimmer in my little boy's eyes shining so bright! 

The not so good results - I have noticed an increase in absence seizures :-(  It has also affected his sleep.  His behavior isn't exactly wonderful, but I don't really care.  I can deal with that.  The positive effects of the medication outweigh aggressive behavior any day.

So after discussing all of the above (plus a little more) with Dr. V here is the new plan:  up the dosage of Onfi (double, 3x/day), keep him on Topamax and double his dosage of Melatonin.  Of course I would have loved to hear leave Trace on his current dose of Onfi and titer off of Topamax - but we can't have everything :-)  I'm just happy to hear his beautiful voice more and more. 

I'll leave you to enjoy one of my most recent & best memories  . . .

. . .Trace & Hudson.  Fearless, Crazy, Little Boys!

Hope, Love, Courage &Faith, 

Laurie

Varsity Cheer

Peyton is officially a 2012-2013 SHS Varsity Cheerleader!!  She made the Varsity cheer team last night and I was so proud.  This will be her second year on the Varsity squad.  I love watching her under those Friday Night Lights.  I also love football whether it be high school, college or pro.  Yes, I'm the crazy mama yelling & jumping up and down in excitement for her team. 

This was Peyton's 5th year to tryout for cheerleader.  She has loved cheering since she was 3 years old.  I have all of her uniforms - even the ones I bought her while in elementary to wear to mini camp.  They are so tiny and adorable! 

My Mini Cheerleader

She now teaches the dances, cheers, jumps and stunts to the little girls attending mini camp each year and adores those little ones. 

Peyton's a little superstitious and every year she has a special tryout shirt made, has Granny fix her hair in the same lucky braided pony and eats dinner at the same restaurant with the same girls while awaiting the results.  Last night she and I reminisced her first tryout - she was in 6th grade trying out for the Junior High squad.  There were 40+ girls trying out for (I think) 8 spots.  She earned one of those spots and I was so proud!

Doing her thing in 7th Grade

The sweet & talented girl who helped Peyton that year and several more is a Senior this year.  Crazy how it was so many years ago, but seems like just yesterday.  Last night as I sat at the dinner table with my girls waiting for results I thought - Wow I only have one more time to enjoy this yearly "Good Luck" dinner with them, only one more time to watch my mom fix her lucky hairdo and one more tryout shirt to buy.  It was a bittersweet moment.  My baby has grown up so fast and these first two high school years have really flown.  I hate to think of how fast the next two will go.  This year I couldn't help but notice how much older she looked - another bittersweet moment.  Somedays I want her to be that crazy, energetic, fearless three year old and in some ways she's still just that to me.  Especially crazy and energetic!  But in the same, I'm so proud of what a beautiful young lady she's become.  

On top again . . . 2011 - 2012 Varsity

Another proud mama moment for me last night!  Lucky for me, this girl has filled my last 16 years with so many of these moments.  I love her to the moon and back!!



Hope, Love, Courage &Faith,

Laurie

The Loss of a Child

My heart hurts.  It is broken.  Two precious boys who would have brought joy, excitement and most of all more love to our family were given their angel wings all too soon.  I didn't have the opportunity to hug them, kiss them, or see their beautiful faces.  However, I already loved them and my heart still hearts.  I wish I could take the pain from their sweet parents.  A pain that is of a greater magnitude than any of us, who have never lost a child, could ever imagine.  My heart hurts so much for them.  They will be forever changed by this loss.  I can only hope this suffering brings their hearts even closer together. 

Another Mito baby gained his angel wings as well.  Just as my nephews, I did not have the pleasure of knowing him.  However, my heart still hurts.  I can't help but think of the suffering he endured here on earth.  I can't imagine the pain his parents must be enduring right now.  I truly despise this disease.

I don't think there is anything worse in life than losing your child.  It is a devastation I don't ever want to feel.  The thought of losing my precious Trace to Mito has crossed my mind a few times.  I'm sure every parent of a Mito baby has had these thoughts.  It's a terrible reality of the disease.  I hope and pray that God doesn't decide to take him to soon.  The loss of a child is something no parent should ever have to face, but a horrbile part of life that many do face.  It makes me realize yet again never to take even one day for granted.  To appreciate every blessing bestowed upon us and to never lose sight of those blessings no matter how thick the "fog" gets. 

May these Angels be forever dancing in Heaven above ~

Hope, Love, Courage &Faith,

Laurie