The Great Flu Shot Debate

So Trace had a visit with his immunologist/allergist yesterday and I already knew the question was coming - "Has Trace had his flu shot?"  I respond "No, not yet" and get quite a look from Dr. P.  I know this is something Trace needs, but it's just not that easy for him.  To catch you up on his immunization history, if you don't already know, Trace has major issues every time he gets a vaccine.  Two days after receiving his one year immunizations along with the flu shot, he landed in the ER with high fever and seizures.  That brought us into the world we live in today.  Trace has always had fever and seizures after receiving vaccines - some worse than others.  The flu shot is #2 worst on the list.  His flu shot last year landed him in the ER the next day.  Pneumovax is #1 - within two hours of receiving pneumovax, he spiked a high fever, had the most seizures ever and was in the ER again.

So back to yesterday and the great debate.  Dr. P and I discussed the following 3 issues: 

1.  Trace's history of reactions to vaccines is very bad to say the least, and how the flu shot has always landed him  in the ER with high fever and seizures. 

2.  Trace's seizure control is at an all time best. 

3.  Trace has some sort of infection right now.  Dr. P. believes it could be due to the eye infection from chalazions, or whatever has been causing the last 6 days of super-human diaherra.  My mystery man! 

After all this, Dr. P and I decided it would be best not to vaccinate Trace yesterday.  So the debate ended and we went home with a script of Tamiflu in case he spikes a fever and instructions to call his neurologist to discuss a plan to get the flu shot or not.

I know Trace needs the flu shot because the flu could be detrimental for him, but I hate to see him in a situation where he could regress.  He's worked very hard to get where he is today.  Talk about being pulled in two different directions.  We'll see what his neuro says and go from there. 

In other news, I'm happy to report Trace has been sleeping much better again.  He's only waking a few times a night now, which is normal for him.  Thank goodness!!  He was up and ready for breakfast at 4:30 this morning, but that's ok because I was able to sleep till 4:30 and then snuggle him till 6:00.  He's the best snuggle bunny in the world.  He wraps his arms around my neck and literally gets nose to nose with me.  I love those moments, even if they are at 4:30 AM!  

We celebrated Thanksgiving this year with family at the lake house.  The weather was georgeous and Trace was able to play outside.  We played bean bags, watched football and ate way too much food for 5 whole days!  It was so nice to spend that time with my kiddos and family.  We even did a little shopping, but not on Black Friday, I can't handle those kinds of crowds.  I actually found Trace 4 pairs of pants for his skinny butt.  It's a nearly impossible feat to find him pants.  His waist is the size of an 18 month old and he's 39" tall - not exactly a good combination.  We were able to find some with an adjustable waist - Yeah!!  He was so cute modeling his new clothes and wanted everyone in the store to see him, he even set off the sensors at the door - it was too funny.  Wish I would've thought to take a couple of pictures but I was too busy laughing.  

Hope everyone had a wonderful Thanksgiving holiday!  Now time for Christmas - my absolute favorite holiday!  I'll leave you with our Christmas card picture from last year.  Please keep all of our mito babies in your prayers this holiday season!! 

  

Hope, Love, Courage &Faith,

Laurie

Trace Update & Golf Pictures

I haven't updated much on Trace, so here's the latest.  Nothing major in the past couple of months, he's been doing good and we're very blessed for that! 

October he had a check up with GI.  I once again was hoping for some weight gain - Trace only gained 100 grams, but at least he didn't lose!  Yes, sadly we have to count every gram.  Trace is already drinking at least 2-3 Pediasure's per day for extra calories and getting his full 1180 calories per day plus some.  However, he's not gaining anything.  He's not even back up to the weight he was before his last hospitalization in August.  As another attempt to gain weight, GI has now added a supplemental formula to the already 240 calorie Pediasure he drinks.  Trace has frequent bad days with tummy troubles and on these days he doesn't want much solid food, usually only in the morning.  You wouldn't either if you experienced what he does on those days.  Because of the fact he doesn't want to eat solids on some days, feeding therapy was also discussed.  We have decided this is something we will not be pursuing.  Feeding therapy is a very intense program which isn't located anywhere near us.  Trace doesn't have problems swallowing, gagging, or with textures, so I don't really see a benefit from this for him.  I do believe in therapy as Trace already sees 2 speech therapists, 2 occupational therapists and 1 physical therapist.  He'll see GI again after the holidays, so we'll see if this new formula works and where we go from there. 

Next, more chalazions on his eye.  He's had more chalazions appear in the last 3 weeks.  These have really caused him some visual impairment as well as discomfort. 

We started off with one popping up July 4th weekend, it is still there.  Two more the last week of October.  His current ophthalmologist is refusing to surgically remove these due to the risks of anesthesia for mito patients, although she removed 3 in March without Trace having any problems.  I'm fully aware of the risks anesthesia, as Trace has been under many times, and am not trying to throw him into surgery as a quick fix.  However, he's been on eye drops for 3 months and now we just started month 4 with a different type drop.  This one makes him scream every time - 3 times a day.  I really feel sorry for my little guy having to live with these annoying things.  So under the advisement of his mito doctor, we saw another opthalmologist last week.  He prescribed an ointment and said give it about 3 more weeks.  If nothing, then we get in to see a very "impossible to get an appointment with" pediatric opthalmologist.  Wait and see, wait and see.

Trace spiked a fever two weeks ago that persisted for a couple of days.  Not sure what it was about, but he exhibited no cause of the fever besides some diarrhea.  But then again, that happens at least 2-3 days a week??!!  Maybe it had to deal with his eye, but it was already bad a week before.  The mystery child as usual.  Last week brought coughing and congestion - but no fever at least!  Then there's the fact that he's been waking for hours through the night again.  He usually just wakes up for a drink 3-4 times and then goes right back to sleep.  It took us a long time (years) to get Trace to that point - actual sleep.  I wonder how I functioned then, but looking back now I don't think I really did.  I feel like we're back at square one with sleep right now.  He's up for hours while I rock him.  I really hope whatever is causing this behavior will just go away.  This makes life hard for Trace, and myself, not to sound selfish.  He will be up at 11:30, 12:30, then from 2:00-4:00 AM, back up at 5:30 wanting "mums mums", then my alarm sounds at 6:15 for work.  I'm really hoping this will get better for him. 

After the ophthalmologist appointment last week, we went over to the Mito Clinic to make our donation from the "Putt" An End To Mito Golf Tournament.  Trace & Hudson presented a very large check to Dr. Koenig & her staff.  We were able to donate $16,000 thanks to some very loving, caring, generous people.  This tournament was without a doubt one of the most amazing experiences I have ever had in my life.  Below are some pictures from the check presentation today and the tournament. 

Sorry if this post rambles and makes little sense, but I've been living in the land of no sleep for the last few days.  Hoping our sleep deprived visit is very short lived!

Hope everyone has a Happy Thanksgiving!!

Hope, Love, Courage &Faith,

Laurie

Energy For Life Walkathon

It's time for the Energy For Life Walkathon!  The EFL Walk Houston will be held at Sam Houston Park, Houston TX, on February 4, 2012.  Team Not Without A Trace is hoping to make as positive of an impact as we did last year.  We were so proud to have had so many family & friends work so hard to make Team Not Without A Trace such a success!  This is our second year and we are ready to Fight the War on Mito!  That's our theme this year and we are really excited about it!  Click on this link Not Without A Trace to visit our team page.

You can register to walk in the event on-line at Not Without A Trace.  Take your participation to the next level by gathering pledges to raise even more money from neighbors, friends, and co-workers.  If you are unable to attend the walk, you may still support team Not Without A Trace by joining our team as a virtual walker or joining our pledge raising efforts and making a donation on-line.  There is also a mail in donation form if you are unable to donate on-line, click Mail In Donation Form if needed.

This year's fundraisers for the walk will include Fight the War on Mito camo tshirts and a  fundraiser with Team Hudson.  Team Hudson is the EFL walk team for Trace's best buddy.  We were able to attend the fundraiser last year and it was a lot of fun and a huge success.  So as you can imagine, we were honored to be asked to join their fundraiser this year.  It will be held January 20, 2012 and include dinner, dance, live auction, silent auction, raffle, face painting, balloon art, toy walk and cake walk. I am really excited about joining this event!  To place your order for a tshirt, purchase tickets to the fundraiser or for more information, please contact me at lauriewehring@yahoo.com.

Every 30 minutes, a child will be born who will develop mitochondrial disease by the age of 10.  Mitochondrial disease occurs when there is a defect in the body’s ‘powerhouses’.  The mitochondria fail to produce enough energy.  That results in organ systems failing.  The brain may be impaired.  They may lose vision or hearing.  The heart may be weakened, and they may have eating and digestive issues.  The symptoms range from mild to severe for each affected person.  The disease is fatal and there is No Cure.  Join team Not Without A Trace and help us get one step closer to a cure.  For more information on joining or donating to team Not Without A Trace, please contact me at lauriewehring@yahoo.com.

We are inspired by your love and friendship, by your concern and support, and by your participation in helping us raise money to continue funding very necessary research that takes us closer to a cure for Trace.

Again, thank you for helping Trace and we hope each of you will be able to participate on February 4, 2012!

Pictures from our walk last year.  Although the weather decided not to coorperate and the walk in Houston was cancelled, our family & friends decided the weather could not get them down and had a walk for Trace at our local park. 

What an amazing day I'll never forget!

An excited Trace at his walk!



Hope, Love, Courage &Faith,

Laurie

"Putt" An End To Mito

I am happy to say "Putt" An End To Mito was a HUGE SUCCESS!!!  It was a truly amazing experience to see how many people came out to play and support our cause.  Trace is so loved by so many!!

Thomas & I decided in August that we wanted to do something to benefit the UT Mitochondrial Center of Excellence.  This is the clinic that treats Trace & his best buddy Hudson.  I know I've said it before, but Dr. K and her team are the most brilliant & compassionate people.  I don't know where Trace would be today without them.  We are fortunate to have this clinic so close to home.  It is the only mito clinic in the Southern United States, so at least we don't have to fly or drive hundreds of miles across Texas to see a doctor who can treat mitochondrial disease.  There are only a handful of doctors in the entire United States who specialize & treat mito patients.  After discussing some options, we thought a golf tournament would be a great way to raise the funds for the clinic.  It was all able to happen (in 2 months!) because of a wonderful group of family members & friends.  They really stepped up and made this tournament outstanding.  For them we are so blessed!  The tournament was held in honor of Trace and his best buddy Hudson.  We had such a wonderful response.  We tripled our original monetary goal - yeah!  We had 33 teams (4 players each) attend and turned down at least a dozen more.  As it was sad to have to turn people away, it was a good feeling to know we filled our tournament so quickly. It was a success before we even arrived at the course Friday!  

Hudson was unable to join us Friday because he was accepted in a clinical trial for EPI-743 in California.  This is a trial drug which has shown promising results so far in terms of increased energy, strength and cognitive awareness.  This drug is not a cure for mitochondrial disease.  It is a baby step on the path to a cure.  A cure so many are fighting for - one that will allow our mito babies to live!  We are so greatful he was accepted into the trial.  Please keep him in your prayers so he may receive great results from this new treatment. 

I don't really know how to express the emmense amount of joy and love I have for everyone who organized, helped, donated, played and attended the golf tournament.  It was something I've never seen or felt before - and it was because of all who love my sweet boy Trace.  God has blessed us with Trace and he will do great things.  On October 28, 2011 we witnessed one of those great things!  Thank you to all for your continued support & help in reaching a cure for mitochondrial disease!

For more information about the UT Mitochondrial Center of Excellence or to make a donation, please go to http://www.utmito.org/. 

I will post pictures from the tournament in a separate post after I receive them. 

Hope, Love, Courage &Faith,

Laurie

Peyton's Sweet Sixteen

Today is my baby girl's 16th birthday.  I can't believe it.  I guess the saying is true - time flies by when you're having fun.  I can remember the day she was born like yesterday.  She was so tiny - 5 lbs and 18" long.  She was absolutely perfect.  That hasn't changed and neither has her petite size.  She's beautiful inside and out.  She's smart and takes pride in making good grades.  She's talented and loves to perform - dancing, cheering and acting.  She gives no less than 100% to everything she takes on.  She is a ball of energy.  She is strong-willed.  She's a joy that lifts all around her up.  And best of all, has a huge heart.  I'm so proud to be her mother.  Thank you God for my precious gift - Peyton Nicole.

So as I said yesterday, birthdays are big in our house.  And being it was her sweet sixteen, it wouldn't have been complete without a BIG party.  So we started planning this event a couple of months back and she decided the theme would be "Circus Circus".  I agreed it would be fun!  Okay, I have to say my daughter happens to live in the clouds sometimes and thought we would get an elephant for her to make her grand entrance on!  After that idea was squashed, and laughed at many times the last couple of months, we decided to rent a "big top".  I thought this idea was much more do-able than the elephant!  It still took a little convincing that elephants aren't exactly easy to come by and would be an incredibly expensive waste of money.  So once she got over the fact that there would be no wild animals of any sort (she tried monkeys also!) we got down to planning the other details.  She had a popcorn machine, cotton candy, lollipops, ice cream punch and other circus fare.  Served cotton candy, cookies 'n cream and lemonade cupcakes - they were excellent!  For entertainment, a DJ and caricaturist.  The caricaturist was a big hit with the kids - he did an amazing job putting all of their personalities to paper.  I did feel a little sorry for him though, for two hours he had to endure the lovely blaring hip hop music these teens love.  The best part of the night for me was seeing my beautiful girl make her entrance in her party dress.  She looked absolutely amazing.  Her shining beauty brought tears to my eyes. The party was a success and I believe all had a good time.  Especially since they are already trying to plan another one - Crazy Teenagers!! 

Finishing Touches

Special present from Aunt Brandee!!! 

Ready to party!

Our "Big Top"

Peyton and her BFF

Thomas, Peyton & I

Beautiful Girls!!!

The "VIP"s

Tonight I get to watch Peyton perform as Amber in her high school musical Hairspray.  I can't wait!  She loves the stage and it shows in all of her performances!  

Happy Birthday My Princess - I Love You!!!

Hope, Love, Courage &Faith,

Laurie

One Year

It feels like 10 years ago when I first heard these two haunting words ~ Mitochondrial Disease

One year ago today Thomas & I sat in Dr. K's office and received the worst news parents could ever hear.  Trace has Mitochondrial Disease - a disease with no cure, no effective treatment and one that could take his life at a young age.  I remember feeling like I wasn't there, like my spirit had been lifted from my body, I was numb.  Dr. K talked to us a little then sent us home to get over the shock.  Although she had to deliver this devastating news, she did it with compassion & for her I'm forever grateful.  We set up an appointment to come back in a couple of weeks with all of our questions, etc.  I left with my packet of mito info, green bracelet, mito pin, and Trace's stuffed turtle "Mito Mike".  I carried Trace to the car, buckled him in his carseat, kissed him on the cheek, set Mito Mike beside him, and cried my eyes out in Thomas' arms in the parking garage.  I felt so scared, lost, angry and sad all at the same time.  I had no strength that day, I felt my world crash around me. 

The next day was Peyton's birthday. I'm not going to lie it was hard not letting the awful news of the previous day overcome me.  It did from time to time, but I kept it to myself.  Birthday's have always been BIG celebrations in our house (as you'll see in tomorrow's post).  I didn't want to ruin or steal her birthday thunder.  Especially since her previous birthday Thomas & I were inpatient with Trace for 3 days.  Thomas and I decided not to tell Peyton about her brother's disease until we were educated about it ourselves.  This was a very good decision, she had lots of questions when we told her and I was happy to be able to answer them. 

The next 11 months were a busy learning experience, filled with multiple appointments with 9 specialists, thousands of doses of medications, lots of learning, hundreds of labs, tons of medical tests, AFOs, oxygen, learning more, hundreds of therapy sessions, daily seizures, fevers, illnesses, learning even more, extreme fatigue for Trace, 3 visits to the ER, surgery, learning life can revolve around poop, heat/cold intolerance, counting every ounce of weight, counting calories, 4 day hospital stay for stomach virus, knowing how little sleep you can actually function on, meeting some very special friends, and lots of LOVE. 

I know this coming year will bring more of the above and I'll learn so much more from it all.  I have come to terms with this awful disease.  I will do everything I can to beat it for my son, for everyone battling mito and for all the mito angels in heaven.  It's been a long hard past year, but has only made us stronger together!!  Thank you so much for all of your support throughout our journey.  I couldn't have made it this far without it.

What I have learned from the journey so far:

1.  Appreciate life, never hold back

2.  You'll never know how strong you can really be

3.  Never doubt God & the power of prayer

4.  Family always first

5.  My husband is my best friend

6.  I'm not alone

7.  It's okay to cry, even if it's everyday

8.  Accepting help doesn't mean you're weak

9.  Life will change & change is okay

10. I am blessed

Trace has been through so much in his 3 years because of this disease.  It's a selfish thing that takes and takes from my baby.  But through it all, mito has not taken Trace's spirit or strength.  I refuse to let it take mine either.  I watch Trace go through things I can't imagine and don't know if I could endure.  He will lay there in that hospital bed, see the nurse coming and immediately start crying because he knows she's there to stick him (or do something worse) again,  after she's done he'll say YEAH! & clap with teary eyes.  That's the spirit and strength I'm talking about.  He's amazing.  He loves everyone in his world.  He lights up a room with his smile, crazy blond curls & big blue eyes.  He's a joy to all who have been blessed to know him.  God chose us to be his parents and for that we are most blessed.  He is here for a purpose for which only God knows.  One day God will reveal his plan for Trace and it will be great. 

I Love You Trace, You Are My Heart

Hope, Love, Courage &Faith,

Laurie

Mito Awareness Week

While other diseases have an entire month devoted to raising awareness, Mitochondrial Disease gets one week.  A disease with no cure.  A disease which has taken so many children's lives in the last year I can't stand to even think about it.  A disease who I watch come out of nowhere and take, take, take and never cease. 

I would have never been aware of this disease if Trace didn't receive his diagnosis last October.  It has become a mission of mine to raise awareness and funds to support research which will eventually lead to a cure.  I know that cure will not come in Trace's lifetime, but ultimately want a cure to exist one day so the suffering can end.  That's pretty much all I can do for my baby.  That, my friends, is a hard fact for me to face.  I'm not a person who takes things lying down so to speak.  My life has brought many challenges to me, and no matter what, I've risen from those challenges with a solution.  Mito is a challenge brought forth to me for which I can't rise from with a solution, there's absolutely not one thing I can do to fix my baby - not one.  All I can do is watch this disease progress, hoping to stall it as much as possible along the way.  This awful thing has already taken so much from my baby boy and the rest of my family.  Before it I was blind to how life can change in an instant.  It happened and I can remember Trace's first seizure like yesterday.  That day was the first day of a new life.  Mito has changed my life forever.  Not all for the bad, I have met many wonderful people along this journey so far and I look forward to making many more lasting friendships.  Today I can't imagine life without Mito.  Sometimes I wonder - What if it would just go away?  How would I function in a "normal" world again?  The answer - I would be lost.  I mean without juggling appointments with numerous specialists, 18 doses of meds per day, and everything else, what would I do?? :-)  At the end of each day though this is my life and I'm so blessed to have it. 

Mito has had an impact on everyone who surrounds us – our entire family, friends, coworkers - everyone.  I have made it a point that all who surround us are aware and educated on mitochondrial disease.  These caring people also help spread awareness.  I am blessed to have their love and support.

In the next five months I am raising awareness and funds by hosting a golf tournament Oct 28th, fundraiser Jan 20th and our team will be walking in the Energy for Life Walk on Feb 4th.  I know that's a short period of time for all of that, but it's how it worked out, and I'm happy it did.  We are doing the golf tournament and fundraiser together with another family affected by Mito.  This family has become a huge part of our lives and I'm so very thankful to have them along this journey. The golf tournament will be benefitting the clinic where our children receive treatment.  The fundraiser, along with the walk, will be benefitting the UMDF.  I have already seen a wonderful response to the golf tournament and know it will be a great success!  I also hope our response to the walk will be just as great as last year. 

I'm pleased to say Trace is doing well right now.  I think the illness last month really took more of a toll on him than I thought it would.  Not much to report other than that.  We don't have any appointments until October.  Not one appointment in September - don't ask how that happened because I don't know - but I'm definitely loving it! 

Here's a pic of Trace from Summer 2008 -

before Mito - check out those cheeks!

Hope, Love, Courage &Faith,

Laurie