Wednesday, December 28, 2011

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,

Thursday, December 15, 2011

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,

Tuesday, December 13, 2011

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,

Tuesday, December 6, 2011

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,