Christmas 2011

The Wehring family had a beautiful Christmas this year.  We received the most amazing gift - Trace was well!  I prayed very hard for him to be well and my prayers were answered.  This was Trace's first Christmas without being very ill and miserable.  Peyton was sick, but not too bad, and tells me the day after Christmas "Mom, you know why I'm sick?"  I respond "No, why?"  She replies "Because I prayed to God that if Trace was going to be sick, God give it to me instead, so my little mister could enjoy his Christmas this year."  It brought tears to my eyes as I was so proud of her selfless act.  It was amazing to see Trace this year - a totally different child.  He didn't mind the big crowds at the grandparents too much and even played chase with his cousin.  Trace can't run yet, but this kind of interactive play is a first for him, and it was really exciting to witness.  He was so animated when opening his gifts saying "WOW!" with each one - even at other's gifts too - it was so fun to watch.  Thomas and I wanted to give something extra special to our girl this year.  She has given a lot in the past 3 years and we wanted to sort of repay her.  I loved watching my daughters face light up as we told her about her gift from Santa.  I loved every moment of Christmas this year. 

We also decided that as a family we will be giving part of our Christmas to others next year.  We will be taking gifts to the children at Children's Memorial Hermann Hospital.  It's been something I've wanted to do since our journey with Mito began.  I can't imagine how bleak it must be for a child to spend Christmas in a hospital room.  I think it will be a wonderful experience for us to bring a little joy to the children who are unfortunately at CMHH over the holidays.  That is part of my New Year's resolution - to simplify my life in order to give more.  I know what a blessing it has been to be on the receiving end of people who choose to give.

I won't go into all the details of the cookie baking, presents, food, family gatherings (all 7, yes that's not a mistake 7), etc.  I will just leave you with a few pictures to enjoy.  Trace is pulling my arm and now we are going to set up his Choo-Choo from Santa.  I know it won't be near as good as Dada's setup but a girl can try :-)

Hope you all had a Merry Christmas!

Hope, Love, Courage &Faith,

Laurie

Trace GI Update

Trace had a visit with Dr. N on Tuesday to discuss the GI problems he has been having the last couple of weeks.  I'm happy to report it was a good visit!  All his labs came back negative and Dr. N said it was probably viral gastroenteritis.  He said Trace should continue to get better, which he has been all week.  I want it to stay that way through Christmas.  Dr. N thought Trace looked really good and kept raving on and on about it.  I guess he must have looked pretty bad at the last visit.  Despite the diarrhea, Trace gained a little weight, which is amazing!  We have worked really hard for the weight he had gained and I didn't want this to knock him back down.  I don't think anything excites me more than a good doctor visit!  Trace was excited too, as Dr. N let him pick several stickers out for his birthday and gave him big birthday hugs.  It made his day, it's all about the small things.  He held his stickers all the way home, even in his sleep.  Wish I could have snapped a picture, but that wouldn't exactly be safe while driving in traffic. 

In other good news, I received a call last week from Transgenomic letting me know that Trace was next on the list for the NuclearMitome Test.  Hundreds of nuclear genes have been identified as causative for mitochondrial disorders presenting as neuropathies, myopathies or liver disease, or are recognized to be important for mitochondrial function.  Enabled by next-generation sequencing technology, the NuclearMitome Test provides comprehensive sequence analysis of more than 400 nuclear genes that may affect normal mitochondrial function.  We are hoping this test can tell us what genes may be affected and therefore give us a better insight on treatment for Trace and his future.  If nothing else, geneticists and doctors may learn something from Trace's test which could benefit future children affected by mitochondrial disease.

Please keep all of our mito babies in your prayers.  As the cold/flu season is here, it can mean a lot of children inpatient due to illness.  A virus most people would be able to fight off could be detrimental for a child with mito.  My Christmas wish is that all of our mito friends enjoy Christmas at home with their beautiful children.  Love them all so much!

Hope, Love, Courage &Faith,

Laurie

Happy Birthday To My Guys

Four years ago today God graced me with the most amazing gift - my sweet Trace. 

Trace was born on his Daddy's birthday - Thomas couldn't have received a more precious gift.  I remember seeing Trace for the first time, seeing his Daddy beaming with excitement that morning as he held his boy for the first time. 

He was so excited he tried to run out of the OR with Trace to show him off to his big sister and grandparents.  It was pretty funny!  Daddy escorted Trace to the nursery in his little box, but not without a stop to meet his big sister and some very excited grandparents first.  I remember thinking how perfect he was, he still is.

He's grown up so much this year.  He no longer has that baby look, he's turning into a little man.  If it were up to me he would still be a newborn.  It makes me sad, but I know it's inevitable, he has to grow up.  In these past four years Trace has taught me more than I could ever imagine.  He has taught me to live life in an entire different way, a better way.  I cherish every moment I have with my sweet boy.  We are truly blessed God picked us to be Trace's parents. 

Trace celebrated his #4 at Chuck E Cheese's last weekend with family & friends.  He had a great time dropping hundreds of coins in the games and pushing buttons - the child LOVES pushing buttons! 

He wasn't scared of the big mouse this time, I was impressed with his bravery as he gave CEC a high five and smiled.  I mean if you ask me, that big mouse is quite scary looking.   

We will celebrate Daddy's birthday this weekend, and of course Trace's again too.  Thomas joked he would never have another birthday after Trace was born, but we haven't forgotten about him yet.  I'm so lucky to have him as a husband, a father to my children, and best friend.  He has made some big sacrifices for our family and we are so appreciative of him for that.  He only wants the best for us and will do everything in his power to make it happen.  I love you babe, you are the greatest!

Happy Birthday to my two favorite guys in the world!!  What a happy heart I have today!

Hope, Love, Courage &Faith,

Laurie

GI Problems

Trace has been experiencing what I'm going to call Super-Human Diarrhea since Thanksgiving.  I can't understand how someone so small could possibly produce so much poop??  I mean he's just not that big??  Everywhere he's been, it's been a mess.  Food is exiting the exact way it enters and pretty quickly.  Which tells me he isn't absorbing much from the food.  Throughout it he has been eating and drinking normally and has not run a fever, so I wasn't all that worried.  I always wait out everything until I know Trace HAS to go to the hospital.  But then Wednesday, despite no lack of fluids, he only uninated twice, 7:00 AM and 1:00 PM.  Trace normally has 10-15 wet diapers per day.  I waited until Thursday AM and no urine :-( So I packed up and headed to the ER with my Mister.  He ended up admitted for dehydration, not a surprise.  Poor baby was so dry he couldn't produce any tears when they were drawing labs & setting IV.  He was put on IV fluids and several cultures were grown.  They had Trace in isolation, he couldn't leave the room and everyone coming in had to wear the blue gowns and masks - poor people.  I really wish they wouldn't have put him on isolation because Child Life had therapy dogs come in, a movie in "the park", etc and he had to miss out on all the fun stuff.  The doctors suspected it could possibly be c diff.  However, the c diff culture was never grown.  That makes me so angry, it would just be inproper to put the words on paper.  I mean come on!  GI has ordered new labs which were delivered early this morning.  So we will see if anything comes of them.  On the positive side everything  done inpatient came back negative.  The pediatrics team we had inpatient chalked it up to viral gastroenteritis.  I hope they are right.  Honestly, with this diarrhea going on for so long a little part of me worries it could be a change in motility. We see GI again on December 13th - Trace's birthday - to discuss results.  I guess why not celebrate in the Med Center - it seems to be our second home and we can see some of the people who care so deeply for our Mister!  I can't believe my baby is going to be 4 years old - where has time gone??  We'll be celebrating this weekend at Chuck E. Cheese.  Trace loves it there, he could care less about the prizes, he just likes dropping the tokens in and pressing the buttons! 

Trace was so excited when Daddy arrived

Snuggling with Topper, the CMHH mascot

Trace has 3 and I hope we don't add any more to his collection 

Catching up on our Mickey Mouse Clubhouse

Hope, Love, Courage &Faith,

Laurie

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