Wednesday, January 23, 2013

Thanks to our EFL team members

Just wanted to say thank you to all those who have signed up to walk with us on Saturday, Feb 2 at 1 p.m. at Sam Houston Park in downtown. While we're not asking for fundraising this year, you are welcome to come and celebrate Will and help spread awareness of mitochondrial diseases!

Maria Contreras
Megan Garza
The Gell’s
Hank & Diane Goggan
Janet Gonzalez
The Hayes'
Peyton & Murphy Jones
The Kotzebue’s
Ed & Pat Martin
Jason Parcell
Ry Pickard
Monica Sanchez
The Sims’
The Stewart’s
Jeanette Stovall

I know many people have said they are coming, but please sign up on our team site, Where' There's a Will There's a Way. Onsite registration is available, but we have a limited number of volunteers and it's so much easier to sign the waiver online.

Happy Energy For Life Walk 2013!

We'll be at Berryhill in the Heights following the walk if you'd like to join us for a margarita!

Tuesday, January 22, 2013

The Bachelor Features Mito

Pathetic admission, I have watched nearly every season of The Bachelor and Bachelorette.

Last night's episode is awaiting my viewing on the DVR. My better half and I tend to indulge ourselves in this show, not for the romantic pursuit of love, but the ridiculous behavior of grown women. What can I say, we're both reality show junkies.

Apparently last night's show featured two special guests with mitochondrial disease.

Here are the two most informative links I found about what happened. I can't wait to watch it!

And for all the little ladies out there, sorry, this bachelor is all mine!

A little update

A little update...

I knew I was counting my chickens too quickly. Since we started on IVG in late October, Will literally hasn't had a booger.

Well, last week that all changed. Likely we just overdid it that weekend with birthday parties and visiting other friends. Alas, Monday night the snot arrived and during the week so did a very low grade fever, more snot and a puffy looking little guy.

We did his weekly IVG infusion on Wed evening and that actually seemed to help. Now, into this week he is almost back to no snot. I mean I should be thrilled that a) all we're dealing with is snot and b) it's been almost two months since he's dealt with snot. So, I guess I'll call that a win.

New Boots:
We also made a visit to the orthopedics place last week to get Will measured for some new leg braces. If you are ever in need of orthopedics, I highly recommend Hope Orthodics - ask for Jason. It's up near The Woodlands, but worth the drive. He is a former physical therapist so he gets it.

Will "Mr. Curious" was all about helping him make the mold/cast for his new boots and Mr. Jason invited Will to the workshop to see all the tools and how they make the boots. Will was in hog heaven. He's really into tools right now. Every night we read "Old McDonald's Workshop" and he knows all the names of the tools and what you can do with them, sounds etc.

So needless to say, he was excited to see the workshop. The guys back there were showing him all the equipment and Will was naming it all. When they got to the oven the guys jokingly told Will that's where they make the pizzas. Will kind of looked at them like, I don't believe you, but ok.

I finally downloaded videos from our video camera we got in like September... If this doesn't work, bear with me. This was a clip from Christmas Day.


Friday, January 11, 2013

Welcome to 2013

I happily threw 2011 out the window. I can't say the same about 2012. Looking back, it wasn't a terrible year, it wasn't great and everything didn't work out as WE planned, but ultimately, it's not our choice.

So, welcome 2013. What do you have in store for us? Might I make two requests?
- A cure
- A baby (or two).

That is all. I don't have high expectations of 2013 do I? (insert maniacal laugh)

The past two months, I've been focusing a lot of me. Selfish sounding yes, but necessary. I feel like we're at a place with Will that's steady. We've fallen into a new crazy world and it's taken me a long time to sort it out but, (knock on wood) I think we might have figured some of it out. However, along the way, I am pretty sure I lost a little bit of me.

I started back up on an anti-depressant after we found out we weren't pregnant in November. It had to happen and it's changed my attitude for the better. I don't get as overwhelmed, sad or anxious - though I still have my days. I bought new skin care products, got a facial, some new make up. I've been trying to grow my very chewed up fingernails out and have even succeeded in getting a manicure twice. Neil and I finally got serious about getting all this weight off and it's working.

I now know what it feels like to get to a "new normal" and am working to make it work for our family. I think my job change significantly helped ease a lot of the craziness.

2013, we're starting strong. Please don't fail me.

I'm a big fan of Dear Abby and my mom mentioned her Jan. 1 column was exceptional. I couldn't agree more...

The original credo of Al-Anon:
JUST FOR TODAY, I will live through this day only. I will not brood about yesterday or obsess about tomorrow. I will not set far-reaching goals or try to overcome all of my problems at once.I know that I can do something for 24 hours that would overwhelm me if I had to keep it up for a lifetime.

JUST FOR TODAY, I will be happy. I will not dwell on thoughts that depress me. If my mind fills with clouds, I will chase them away and fill it with sunshine.

JUST FOR TODAY, I will accept what is. I will face reality. I will correct those things that I can correct and accept those I cannot.

JUST FOR TODAY, I will improve my mind. I will read something that requires effort, thought and concentration. I will not be a mental loafer.

JUST FOR TODAY, I will make a conscious effort to be agreeable. I will be kind and courteous to those who cross my path, and I'll not speak ill of others. I will improve my appearance, speak softly, and not interrupt when someone else is talking. Just for today, I will refrain from improving anybody but myself.

JUST FOR TODAY, I will do something positive to improve my health. If I'm a smoker, I'll quit. If I'm overweight, I will eat healthfully -- if only for today. And not only that, I will get off the couch and take a brisk walk, even if it's only around the block.

JUST FOR TODAY, I will gather the courage to do what is right and take the responsibility for my own actions.
And if I forget all that, I have my little buddy and his flashlight to guide be back to what is pure.

Thursday, January 10, 2013

Energy for Life walk - clarification

Just wanted to clarify... we are still doing the walk and we'd love for you to join us as a participant if you would like to.

We're just simply asking for the money you might have given or asked your friends to give to a mito organization, to give to the Leigh's clinic program.

For more details on where and how to donate, go here:

To join our UMDF Energy for Life walk team, go here:
To join the team, you are not required to give any money. If you have already donated, the money will be put to good use! So thank you.

We will be gathering at Berryhill in the Heights after the walk. If you can't join us for the walk, please feel free to come drink margaritas with us, we'll be there from about 3 - 6 p.m.

Go team Where There's a Will, There's a Way! Go UT Mitochondrial Disease Leigh's Clinic program! So much good mo-jo in the mito community right now.

Shout out to Ryann Jarrad at Randalls for coordinating a special water bottle and food donation to the Energy for Life Walk!

Christmas 2012

I am really not sure where to begin to capture Christmas this year. I'll let the pictures do most of the talking...

This year was dramatically different for me than last year. Last year, just a mere five months after Will's diagnosis was Christmas. I was frantic that it was going to be his last one, or if it wasn't his last, it should be the best ever. I was too much of a mess to make it really good, so I just glazed on a smile. Sadly, I don't remember a lot from last year's Christmas. (Thankfully, I blogged about it haha).

This year was really special and amazing for us. Will has been healthy for a long time now (likely because of the IVG drugs) and he was so much fun. He really "got it" this year and it was fun to help him write a letter to Santa, albeit hooked up to the IVG tubes. Seeing the magic of all of it through his eyes made me realize that it doesn't matter if it was his first or last Christmas, what mattered to me was that we had a really good time. For that, I am tremendously thankful.

To kick off the season we did our annual hay ride through the Heights to check out the lights. Will and crew waiting for the hayride to arrive.
Dad and Will on the hayride
A big purple dinasour - ala Will's favorite Barney.
His school's annual Holiday Sing-a-Long

Jingle Bells - Will was hilarious as he was a few words off the song occasionally and you could hear him yelling the words out.

Rudolph the Red Nose Reindeer

My little angel :-)
Breakfast with Santa at the Aquarium

Yes, Santa now wears red lipstick

Will's typical "cheese" face

Waiting for the train ride

On the train, not interested in taking anymore photos

With his pal "Murph" on the train. They picked the last bench on the train.
I guess that's where the cool kids still sit.
Will and the two birthday girl's. (My mom and mother in law's birthdays are both Christmas Eve).
Will told me they needed a birthday crown like he gets at school, so we found some special princess crowns for the two lovely birthday girls.

Can't get enough kisses on this guy.
Christmas morning at home. Santa brought Will a race car and a yard tools set - mower, blower, weed eater and chain saw. When we took the tree down, Will promptly went to his room to get the chain saw to "take down the tree".

Blowing all the tinsel off the carpet.

Spiderman sleeping bag from Grandpa and Grandma

Tis the season for tools - he got a drill, ear protectors, sander, tool belt etc from DeeDee and Papa

Spoiled by aunt Lisa and Tom in the firetruck

Inspecting one of cousin Cameron's toys

Will and Carson - nothing but trouble and giggles

Will holding his new cousin, Sophia!

Loved the Christmas tu-tu on Sophia - she is so adorable.

Will wanted to do EVERYTHING for and with baby Sophia, incuding poopoo diapers...

A pretty good Christmas if you ask me!

Monday, January 7, 2013

Energy For Life Walk 2013

I'm long overdue for some posts - Christmas, New Year's, fun stuff... those will come soon. But for today, I wanted to share a choice we've made for 2013.

As many of you know, the United Mitochondrial Disease Foundation has an annual Energy For Life Walk and fundraiser each year. Last year our team "Where There's a Will, There's a Way" raised nearly $25,000! A HUGE amazing gift. Additionally, many donations were received in Will's honor since he was diagnosed on July 5, 2011. THANK YOU.

This year, we will be participating in the Energy For Life walk, but have decided to ask our family, friends and all those who love Will to give financial contributions to support our UT Mitochondrial Disease Center of Excellence and its new Leigh's disease clinic.

The UT Mitochondrial Disease Center of Excellence is a non-profit and it is diligently working to raise money to add additional resources, technology and "brain power" to help patients with Leigh's disease live a better quality of life, and ultimately a cure. Currently, the center treats 400+ mitochondrial disease patients from around the United States and recently, there has been an increase of Leigh's patients - likely the largest group treated by the same doctor in the US. A lot of commonalities as well as abnormalities for Leigh's patients can be harnessed and shared if given the proper attention and support.

Why you ask wouldn't we directly support both organizations? We do support both - physically and socially, but for the short-term while the UT Mitochondrial Center of Excellence builds this program that will directly and immediately help Will, we're asking for financial contributions to go to the Leigh's clinic in lieu of contributing to other organizations.

Contributing to the Leigh's clinic will have DIRECT and IMMEDIATE impact for Will. The thought of having a doctor and clinic completely dedicated to Leigh's gives us tremendous hope for Will and his quality and length of life.

So, you might be wondering how to contribute? This Leigh's clinic program is in its infancy (as are many of its patients) Dr. Koenig and her team are working with its hospital affiliation, Memorial Hermann, to put together an online portal for people to electronically contribute. I wanted to wait to announce this till the website was ready, but so many people have been asking about our walk team hence this post...

Donations can be made to "The Memorial Hermann Foundation" and should be mailed to:

The UT Mitochondrial Center of Excellence
6431 Fannin St. MSB 3.151
Houston, Tx 77030

In the subject line you must put: UT Mito / Leigh's Clinic

For further information on making donations, people can call the clinic at 713-500-7164 and press option 1 to speak with Melissa Knight.  It is tax deductible and you will receive an acknowledgment letter from the Memorial Hermann Foundation, as well as a personal letter from the clinic. If it's easier for you to bring a your contribution to me or Neil directly - no problem! We will drop it off on site - we're there enough already :-)

So, to recap:
- please join us for the Energy For Life Walk if you'd like to on Saturday, Feb 2 at 1 p.m. at Sam Houston Park in downtown Houston. If you've already donated, no worries! The money will be put to very good use. You can register here:

- please consider making a donation to the UT Mitochondrial Center of Excellence instead of donating to any other mito-related organization or event for the short-term. Website coming soon for easy online giving.

- we'll be doing a post-walk after party again this year. Likely at Berryhill in the Heights. I hope you can join us to celebrate Will and all his amazing accomplishments.

- later this year, an amazing group of our friends is organizing an event to benefit the Leigh's clinic so stay tuned for more info there

I know this is kind of confusing and weird, but we know it's the right thing to do for Will, please feel free to email me with any questions,

And finally, thank you from the bottom of our hearts. Gifts of time, treasure and talent come in many different ways and we treasure each one.