My Healthy Child

What's up with my healthy child?  At the beginning of October Peyton came to me with what she thought at the time were 3 bruises on her shin.  I joked and told her to try not to be such a klutz.  A week later she had these so called bruises up and down both legs and one arm.  She was experiencing pain when touched and swelling.  She had also been complaining of stomach cramping and feeling like she was going to pass out.  I felt this was some sort of inflammation of her glands or blood vessels - definitely not bruises or a rash.  I took her to the pediatrician the following morning.  He examined her and said he hasn't seen it in 30 years.  "It" turned out to be Polyarteritis Nodosa.  An autoimmune disease which causes inflammation of the arteries, among other things if not treated properly.  This didn't suprise me, or alarm me for that fact.  Honestly I laughed and said only the weirdest of the weird for my children!  He said "Well Laurie they are YOUR children."  Ha Ha doc!  He told me to give her ibuprofen and call back if she runs fever or vomits.  I took Peyton to lunch and did some research.  I didn't like what I read regarding long term effects of the disease.  There were also better treatment options.  Peyton has had some problems with use of ibuprofen in the past and taking as much as he prescribed can't be good for that.  I decided we need a second opinion.  I called Trace's immunologist and she referred me to rheumatology.  Peyton will be seeing the rheumatologist Dr. K, who works in the clinic with Trace's specialists.  I know this is the best place for her to be.  During my week of inpatiently waiting to see when Dr. K could fit Peyton in, I called the appointment line to see when his first available was. It was 1 year for new patients!  I guess Mito has it's perks!  Peyton's appointment is next week so we'll see what happens. 

On Friday, Trace's mito specialist attended our golf tournament benefit for the clinic.  I was able to show her Peyton's legs and arm.  She let me know that a lot of siblings of mito patients have autoimmune issues.  She also assured Peyton she doesn't have to worry all weekend because she doesn't have Mito :-).  I honestly think Peyton was a little relieved to hear that.  I don't blame her - what she has seen this disease do to her brother and other children would scare anyone.

So that's that - my healthy girl - not so healthy right now.  I have to give her some props though, she's one tough cookie.  She has continued to cheer & dance as much as her body allows.  She had to miss cheering at the game Friday due to the pain and swelling.  She has never missed cheering at a football game.  She's cheered through fever, flu, stomach ache, torn ligaments, you name it.  I know the only thing that got her through missing the game was being at her brother's golf tournament.  She didn't miss the pep rally though!  I love that crazy girl!!

Hope, Love, Courage &Faith,

Laurie

 

Two Years

Today marks the 2nd anniversary of Trace's diagnosis with Mitochondrial Disease.  My heart aches today.  I've been trying to not think about it all week, but it's in my mind always.  I think about how horrible Mito is, how "lucky" Trace is, how that day played out, how blessed we are to still have him here with us, how awful I feel for the parents whose babies have grown their angel wings way too soon, what I can do to make these childrens lives better . . . 

I believe when you have a child with a disease like Mito you live the process of grieving over and over and over.  It never stops.  You're in denial, angry, sad and accepting.  It's so true for me.  I lived through this process so many times over the last two years.  I try to stay positive & accept this is just the way it is - the way it was meant to be for us.  I've learned it's best to live in that stage as much as possible.  But when I get hit with something new, for instance Trace starts experiencing a new type of seizure, I start it all over.  I can't help it, I try not to be sad or angry, but I guess I'm human after all.  There's been times within this last year that I've even thought "Does Trace really have Mito? Or is this some big mistake?" and then I answer myself "Really? Are you serious?".  I've even asked his mito specialist if she was sure of Trace's diagnosis.  She gave me a kind smile and reassured me he does in fact have Mito.   Lucky for me I have a wonderful support system of family and friends to help me go through this process of grieving over and over and over again.  Oh yeah, and a good therapist too :-)

This past year has been filled with much of the same as the year before - sleepless nights, tons of doctor appointments & therapy, hospitalizations, tests, dosing lots of meds, etc., etc.  But it's also been filled with Trace becoming way more verbal than he's ever been before, achieving some of his goals for speech & occupational therapy, making wonderful memories, lots of family time, eating at restaurants with Trace, snuggling, and best of all lots of hugs & kisses.  I feel Trace has come a long way in the last few months.  The first few were a bit unsteady with lots of regression from his illness and hospitalization in December.  Then everything seemed to level out and Trace has really thrived.  I'm so proud of my little boy to have come so far in such a short period of time.  He amazes me every single day.

What will this next year bring?  I don't know.  I do know that I will stay as positive as possible, enjoy every moment of every day & sleepless night, fight for Trace as hard as he fights, cherish every single skinny-armed hug and sweet kiss he gives, and even love the bad moments because although bad they are still moments we have together. 

Hope, Love, Courage &Faith,

Laurie

 

   

Mitochondrial Disease Awareness Week

On October 5, 2010 our lives changed forever - Trace was diagnosed with Mitochondrial Disease.  It took us a relatively short period of time to reach this diagnosis.  For many people Mitochondrial disease can take many years to diagnose.  This ugly disease can present itself at birth, childhood or as an adult. 

I know it seems long, but here is a very short summed up version of how Trace got his diagnosis of Mitochondrial Disease. 

2 months - Trace developed reflux, he would taked hours to eat just a few ounces, and then projectile it all back out.  He would scream for hours each night. 

9 months - Trace started holding his head to one side a lot, told it was due to reflux.  Trace received his first half of the flu shot at his 9 month checkup.  A few days after the checkup Trace started jerking his arms/legs when falling asleep - we didn't think too much of it.  Trace had been meeting all of his developmental milestones through this age.

12 months - Trace received his one year vaccines and the second half of the flu shot.  Three days after the checkup he started having generalized seizures.  He had his first one hour EEG on Christmas Eve.  Trace continued to have seizures daily.  We were referred to a pediatric neurologist, the first appointment we could get was 4 months away.  Trace's development completely stopped.

13-15 months - During this waiting period to see the neuro I kept a daily journal of Trace's activities.  Logged everything he ate, drank, meds, bm's, and all seizures.  Trace is still taking a bottle due to the fact he refuses solid foods most of the time.  Trace looses speech development.

16 months - Trace had his first visit with the pediatric neurologist.  Trace was not having a good day and had around 50 or more seizures during the course of the day.  Trace had his 2nd one hour EEG with abnormal results.

17 months - He had his first 23 hour EEG.  He is still not developing.  He has ataxia, extremely loose joints, is not responsive a lot of the time.  He experiences constipation or diarrhea daily. 

19 months - Trace had his hearing tested due to lack of speech and balance problems - normal results.

20 months - First MRI.  It showed no evidence of strokes or anything else glaring as the reason for seizures.  Trace was put on Trileptal to help get seizures under control.  We were told we may never know the cause or what type of seizures Trace experiences. 

21 months - Trace stared receiving speech, physical and occupational therapy to help his development.  He had his first eye exam with good results.

22 months - Trileptal no help and Trace's seizures become more violent.  05 Oct 2009 Trace was admitted to the hospital's Epilepsy Monitoring Unit for a 3 day EEG.  During this stay he was poked 16 times for numerous genetic tests & other labs, had two IVs placed,  MRI, MEG, and not to mention all the leads glued to his head for 72 hours.  We met Trace's  epileptologist Dr. V during this stay.  She visited Trace a couple times per day to check on him.  I felt so bad for my baby during this stay.  He had too many seizures to count.  We left with a diagnosis of Myoclonic Epilepsy.  We were sad he had epilepsy, but happy we had a diagnosis.  I felt I could fix him now - little did I know, I will never be able to fix my baby.

24 months - Trace started walking - gait was still wide, not always steady, but he could do a few steps alone.  It was a huge milestone!  He was also taken off the bottle at this time.

26 months - First appointment with his peidatric orthopedic to discuss the use of leg braces.  Since Trace couldn't yet perform tasks on command, Dr. Y wants to evaluate again in 6 months.  Trace did eventually end up with Ankle Foot Orthotics - they were no help.

27 months - Visit with Dr. V to discuss some labs.  Due to high pyruvate, extremely high lactic acid (27), myoclonic epilepsy, developmental delay, GI dysmotility, and hyperextensibility she told us Trace could possibly have Mitochondrial Disease.  This was the first time I had ever heard the words Mitochondrial Disease.  My first question - "Is there a cure?"  Her answer - "No."  We were referred to Dr. K to discuss Mito further.  This was now the second most devastating day of my life.  The first being the day he started experiencing seizures.  But this will all be trumped by the news we receive on October 5, 2010.

29 months - We met Dr. K and dicussed the possiblity of Trace having Mito, future medical testing, sleep issues and a lot of other things.  She ordered a Brainstem Auditory Evoken Potentials test, Sleep Study, Muscle Biopsy, and other genetic tests and labs. 

30-34 months - Too many tests, new specialists and new issues to write.  Still having seizures.  Development is at 12-18 months.

October 5, 2010 Trace is diagnosed with Mitochondrial Disease.  

Please educate yourself & help spread awareness of Mitochondrial Disease - for this little guy's future and all others affected by this devastating disease.  They need a CURE!!

My HERO, Forever & Always

Hope, Love, Courage &Faith,

Laurie

 



Fun at the Beach

We had a fabulous weekend at the beach.  It was kind of a spur of the moment trip as it wasn't even planned until 5 days before.  I still can't believe we actually did it.  But we did and it turned out to be some amazing & much needed family time! 

Friday - After a lovely battle with traffic, we arrived at San Luis Resort about 7:00 PM.  The place was beautiful! 

View from our 16th floor balcony

Trace was excited to ride the elevator as usual.  He overlooked the balcony at the spash spash and was excited.  We opted to not take him swimming as it was already past his bedtime and didn't want to ruin anything for Saturday.  So room service for dinner, birthday flowers for me from my sweet hubby, and hanging on the balcony enjoying the view.

Nightime pool view

Rainforest Cafe Volcano Erupting

Saturday - We headed down to the pool about 9:00 AM.  They had a waterslide, which Thomas took Trace down at least 15 times.  The child could have done it about 15 more, but Daddy was worn out :-) 

So we all headed across the street to the beach for about 30 minutes.  Trace loved the waves!  He pretended to jump them and laughed so hard he could barely stand. 

Next we headed back up to the room to clean up and have lunch at Rainforest Cafe.  I wasn't sure how Trace would do for this.  He usually hates being in restaurants - maybe the loud crowded environment, maybe the fact he could care less about eating, maybe all the above.  Well he did great and loved everything except the monkeys.  Good thing we chose not to sit by the gorillas :-)  Thanks big Sis for that advice!  We all enjoyed our food and then rode the river ride.  It was a really neat ride and we all enjoyed it- with the exception of the monkeys who received a very loud NO! everytime we passed. 

Rainforest Cafe River Ride

After lunch we headed to tour the Bishop's Palace (yes we're pushing it a little with Trace).  It was beautiful and Thomas and Peyton really enjoyed it.  I had seen it as a child on family vacays.  Trace did good and we managed to get out of there with not one thing broken or one screaming fit! 

Peyton at Bishop's Palace

We drove down the strand since it was so close.  It was pretty hot, so we parked and made only one stop - LaKings Confectionary.  Good choice - Peyton loves Ice Cream which they had aplenty and Trace was in awe at all the chocolate.  We bought a few pieces of chocolate, ordered some chocolate malts and rootbeer floats, then the meltdown happened - no, not the ice cream.  I took Trace out, but that only made it worse.  So back in we went and he was able to show me what he wanted, thank goodness.  They had one of the machines where you smash the penny and all he wanted to do was turn the crank.  Wish he could have just told me that before all the screaming and crying.  So with goodies in hand, we headed back to the hotel where Trace & I napped and Daddy & Peyton hung by the pool.  Really pushing our luck, we went to Gaido's for an early dinner at 5:30.  Okay I'll admit I was scared we had hit Trace's threshold, but Thomas managed to get down his last bite of food without rushing before having to take Trace out of the restaurant.  Peyton and I enjoyed the rest of our amazing dinner and back to hotel we went for more spash spash.  Then some much needed nigh, nigh for the little guy and more balcony time for the rest of us.

Sunday - One more quick trip to the pool, which was surprisingly warm.  Then another across the street to the beach, not so warm.  A cool front pushed through late Saturday night.  Trace was cold and blue, but didn't seem to mind at all.  We didn't let him stay in for more than 5 minutes and we all headed up to shower and pack up to leave :-(  I all of a sudden started feeling sick.  Not such a pleasant ride home to say the least.  Finally made it home and to bed I went.  Thomas made me chicken noodle soup and I was feeling much better by evening.  I was so happy I didn't get sick on Saturday though.  Peyton had it on Tuesday and so far so good with Trace and Daddy. 

So that was it for our spur of the moment family trip.  It was amazing to get to spend so much quality time together!  We are already looking forward to going back!

Hope, Love, Courage &Faith,

Laurie

 

"Putt" an End to Mito

“Putt” an End to Mito

October 26, 2012

Stephen F. Austin Country Club

San Felipe TX

I’m excited to announce the 2^nd Annual Wehring/Schaper Invitational Golf Tournament benefiting the UT Mitochondrial Center of Excellence!!

The tournament is held in honor of my son Trace and his best buddy Hudson Schaper, who battle mitochondrial disease.  These two little boys are true Warriors!

Trace & Hudson receive care from the UT Mitochondrial Center of Excellence.  They provide comprehensive services to aid in the diagnosis and management of mitochondrial disease.  The UT Mito Center performs research in the field of mitochondrial disease, investigating novel treatment approaches to this devastating disease.  I have a profound love for this team who works to give my son, and all affected, the best quality of life.  They are compassionate & brilliant!  For more information, please visit www.utmito.org.

Every 30 minutes, a child will be born who will develop a mitochondrial disease by the age of 10.  We all have mitochondria – they exist in nearly every cell in the human body.  They generate 90% of the energy the body needs.  Mitochondrial disease occurs when mitochondria fail.  The affected individual may have any combination of symptoms including strokes, seizures, gastrointestinal problems, swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.  The symptoms range from mild to severe for each affected person.  There is NO CURE for Mito – but there is HOPE.    

For more information about registering your team or becoming a sponsor please email me or comment below.  Again, THANK YOU for helping Trace get closer to a cure!

We are inspired by your love & friendship, by your concern & support, and by your participation in helping raise awareness & research funding for mitochondrial disease.

 Mitochondrial Disease

     Awareness Week

September 16-22, 2012

Hope, Love, Courage &Faith,

Laurie

Special Needs Equipment

Last week at Trace's doctor appointment it was discussed that he needs a medical stroller and bigger bed.  Trace has officially grown out of his baby stroller and crib.  Shocker I know since he is almost 5 years old.  I'm happy to see that they have lasted this long!  It's just not safe for him to be in either anymore.  I will be honest and admit I knew it was coming, but was putting it off as long as possible.  I've always thought if I put if off just a little longer Trace will be able to get himself around good & learn to sleep in a normal bed.  It's the part of me that yearns for my little boy to have a normal life. 

The medical stroller must last for 5 years.  You just don't get to decide you don't like it and go out and buy another.  Well I guess you could if you had a few thousand $$ to throw around.  This means I have to think about what may be 5 years from now.  That's scary.  The fact is he may need extra equipment by then and the stroller must be one to accomodate those needs and grow with him. 

The decision on which bed to pick is easier.  The Sleep Safe Bed seems to be our best option.  It will safely contain him, is equipped so oxygen use is not a problem and doesn't look like an animal cage.  Our biggest decision with this is where to put it.  As of now, his crib is still in our bedroom.  It's just the easiest option, as Trace wakes up at least 3 times a night.  I don't think the bed will fit comfortably in our room.  So we have 2 options:  (1) move Trace to his room or (2) add on to our bedroom.  I'm going to move him to his own room as it's the most sensible/easiest option.  I know it will be hard for me as I'll be walking up and down the house several times a night.  Sounds lazy, but I already know how hard it is with him in my room - especially on those nights he's up 7 times! 

I pray all of this works out and I make the right decisions.
 

Hope, Love, Courage &Faith,

Laurie

 

Happy Anniversary

Today marks 6 years of being married to my wonderful husband Thomas.  I remember standing on the beach in Cabo San Lucas like it was yesterday.  It was the most amazing day!  Really, it was a dream come true.  I will sum up the last 6 years with these few words - love, learning, patience, laughter, joy, heartache, hugs, tears, excitement, change, and triumph.  Our life hasn't exactly turned out like what we imagined that day on the beach, but together we've made it through it all.  Thanks for standing by my side through this journey.  I love you Babe!  Wishing us many more years together!! 

  

Hope, Love, Courage &Faith,

Laurie