Always My Sunshine

I saw this on a friends Facebook page and I felt compelled to post it here. Thoughts and prayers for all those who have lost. May peace one day find us all.

Baskin Robbins TONIGHT!

Please don’t forget to come to Baskin-Robbins at Ella and 43^rd near the Kroger shopping center tonight! 20% of sales between 5 and 10 p.m. will go to UMDF in Will’s honor.

I'm thinking about buying an ice cream cake for the office. Just what we need in our work freezer.

Our Team “Where There’s A Will… There’s A Way” has raised nearly $11,500! That has far beyond exceeded any hope or expectation I could have ever had, so, I upped our goal to $15,000! Thank you all for posting on Facebook, asking friends and family to contribute and being so supportive.

See you on Saturday!

New thank you's go out to:
Jack Bellows
Laura Bellows
Joey Broussard
Katie Butler
Jackie Etheredge
Eddison Fu
Robert Gardner
Wes Hildebrand
Andre, Bridgette & Cooper Kostelnik
David Kotzebue
Michael Largent
Mark & Cynthia Latour
Leslie Madison
Julie Menele
David Morris & Anne Lewis
Sara Morton
Erin Sinisi
Jim Stevens
Many Sutphen
Melissa Thompson
Adam, Stacy & West Walton
Erin Wu
Mike Wu
Irene Yang

Mito Carrier Update

I have been negligent in announcing some very exciting results! You might remember from a few posts ago, that the cause of Will’s mito disorder comes from a genetic mutation that is only passed down through the mother’s egg. (it’s different for other types of mito, this statement is relevant only to Will).

So, my grandmother, my mom’s mom, was tested to see if she too is a carrier of the Mito mutation. If she was, then my mom’s three sisters and one brother and all their children and grandchildren would be at risk for having the same mutation. I think that would have been nearly 20 people.

My grandmother tested negative for the mutation! Yeah! So you might wonder how this even happened to us? Apparently, when the egg and sperm meet up they both bring some sort of “gene mutation cleaner” with them. There is some organism that is supposed to clean up any of the abnormalities while the baby is the womb. There’s a very rare chance that those things don’t work, and then an even more rare chance that the mutation is passed along. So here we are, a rare species over here. I’m sure there are more scientific ways to explain this, but I’d have to do a lot of googling.

In other news, another round of thank you’s to those who are signed up for the Energy For Life walk. I can’t believe it’s on Saturday! The weather is supposed to be perfect.

Joey & Elizabeth Borski

Monica Danna

Cara Durnin

Debbie & Roy Henderson

Kim Humrichouse

Manith Kong

Debra & Greg Kaul

Colton & Camryn Klingensmith

Graham, Amie & Taylor Mitchell

Dianne & Danny McCormick

Cari Morgan

Diana Morris

Scott Mosley

Stacey Murchison

Nancy Pike

Waco Rainey

Erin Saladino

Mark Stevens

Alexis Thorne

Andrew Yang

Carrie, Cody, Brennar, Brody & Breyton Zobac

If you haven't signed up yet, there's still time. And don't forget, we're going to Berryhill in the Heights on 11th street if you'd rather just meet up there.

Neil and I went to New Orleans this past weekend for what was possibly the most fun wedding ever. Will stayed with my parents and they all went to IHOP after church and got balloon hats (above). Carson and Will had a blast and Will came home pooped and ready for bed.

Hello again!

Well, it’s been a while since I posted, which is somewhat unlike me. I guess I’ve been in a personal thoughtful place about planning our future and not know when our time with Will is going to expire.

Since Christmas, we’ve spent a more “intense” time with Will. We’ve had a long weekend here and there, plus the Christmas break. It’s hard to let go and get back into a routine of not seeing him every day.

You hold him and you want to hold him so tight to seize the moment, but all the while you feel it slipping away. Very bittersweet.

He has a bit of a cough right now, which puts me on pins and needles with worry. No fever, not even a runny nose. So what the heck is it?? It’s not a croup cough; it’s not in his chest. ??? Ug.  Something is going on with his body that is taking energy from other places where he needs it to recover from this cough.

After realizing that for the past two weeks, Will has only had 3 BMs on his own, the others have been with a suppository, I decided to research some other options than Miralax and suppositories. About the same time I was introduced to a new mito mom and as we compared notes, she recommended L-Reuteri for his constipation.

We tried it at night and the following day he had a BM. Or as Will yelled to everyone at school, “ME BIG POO POO in POTTY” – clearly we make a big deal of poo poos in our house, especially when they are in the potty. He was mighty proud of himself and I was mighty happy. Hopefully we continue to see results.

In Energy For Life walk news, we’ve had a flurry of new people and donations coming in. We’re now just a $2,000 away from the $10,000 goal and I would love to exceed that. Seeing names of strangers, friends and family as part of our walk has given me inspiration, unexpected joy and a sense of hope that maybe one day there really will be a cure and that it will be in our baby’s lifetime. Excuse me, in our big boy’s lifetime. He’s not a baby anymore!

Special thanks to the following people for their contributions to UMDF:

Sally Allen

Christina Almy

Jack Beck

Jennifer Bersani

J.B. & Nicole Brafford

Marian Brinkman

Divya Brown

Ruby Busker

Vanessa Cadena

Alexa Castillo

Oscar Castillo

Brittany Chabolla

Jennifer Cheng

Tim Chuang

Victoria Clites

Maria Contreras

Douglas Dawson

Jean Davies-Jones

Emma Doss

Patricia Edwards

Ryan Ermis

Maxine Eichner

Darla Fanelli

Mike Fann

Carrie Fielder

Tate Fraske

Wren Fraske

Lois Girten

Jeremy Gonzales

Veronica Gonzales

Michael Gracia

Dan Grady

Mary Hatala

Kenneth Haynie

Elizabeth “Susie” Hernandez

Joel Hernandez

Andrea Jiles

Jody Kerwin

Carlton Kon

Lauren Lindsay

Pamela & Matt Merhan

Ashley McCormick

Scarlett McDowell

Steven McDowell

Anthony Nguyen

Kristina Ortega

Jake, Emily & Luke Parsons

Judith Perales

Craig, Tahra, Caroline & James Peterson

Jody Philley

Sengkeo Phrasavath

Joseph Rafferty

Teresina Rafferty

Stephanie Riceman

Monica Sanchez

Marissa Serna

Victoria Serna

Greg Scogin

Jennifer Scogin

Gracie Sims

Gary Stinnett

Brian & Teena Stoker

Claire Thielke

Devin Torrez

Marcus Torrez

Kenneth & Janae Tsai

Liane Tsai

Stephen Tsai

Joe Ueng

Sylvia Wagman

Christina Wang

Amber Whittenton

Renee Winder

Hard to believe this was Will at 1 year old. His knees locked and not even able to cruise, walk or stand independently. We've come a long way. This past Christmas marked the 1 year milestone of how long he's been able to walk independently.

Another Round of Thanks!

Many many thanks to all of you who joined and/or donated in the past week. I can't tell you how much we appreciate the support. It's going to be an awesome day and it's because of people like you. Only three more weeks to the big day.

Gary & Donna Abbott
Sarah Arnold
Rachel Buckley
Lindsey Brown
Kellie Byers
Lane & Kaelen Enderby
Jim & Lynne Hackerdorn
Sandy Lea
Deb Giedris
The Gell's
Jason Hollis
Don Holmes
Joe Lea
The Majewski's
Lisa & Contessa Moore
The Montemayor's
Amanda Oudt
Ry Pickard
The Pike's
Amy & Chris Price
Pat Sorrells
The Williams'
Scott Wolff / Transwestern San Antonio
Charles & Lyla Wooten
Cody & Carrie Zobac

Will doing the stairmaster getting ready for the walk.

*Please, if I missed your contribution I sincerely apologize. I do these posts at night and sometimes I'm not totally functioning.

Don't forget on Jan. 31 to go to Baskin Robbins on 43rd and Ella between 5 and 10 p.m. 20% of the profit will go towards our fundraising goal. You must mention TEAM WILL when you pay.

Also, if you live in Katy, another team the Pohlarbear Pack, is having a fundraiser on Sat. Jan. 28 from 5 - 8 p.m. at the Cinco Ranch Chick-fil-a in Katy at 23860 Westheimer Pkwy, Katy, Tx 77494. 10% of total sales go to UMDF. As they say, Eat More Chicken!

A Lovely Lady

It just doesn't seem right starting 2012 without Grandma Ryan. We miss you!

Opening up birthday presents for her 90th birthday in 2010.

Big Boy Bed

We finally finished! During the Christmas break we made multiple trips to IKEA and got Will his big boy room all done. Neil with his trusty helper assembled a bed, dresser and 16 cubby shelf unit. The big question is, does he sleep in it?

Well, Neil and I have a bit of a problem. Since Will was diagnosed, we started a badddd habit. We would let Will get in bed with us whenever he or we wanted. We just wanted him near us every second possible. We didn't want to look back in 2, 5, 10 or however many years we have and regret it. So, now that reality has sort of sunk in, we're trying to break us all of the habit. Consistency is key. My brain tells me that, but my heart just wants to snuggle. So, some nights the heart wins. At any rate, the toys are much better organized.

The old "baby" room.

Daddy's "helper"

Final touches

Super star!

Toy shelf - what a mess of plastic.

Singing in bed to mom.

Will's 1st Zoo Trip

We live in Houston. I refuse to go to the zoo during the months of April - November. It's just too hot. It's stinky and in general yuck. Plus, the mito disease seems to affect Will and his ability to cool down, so going outside for long periods of time is really not an option.

So this past weekend - note in January - we set a trip to the zoo to coincide with a trip from Neil's brother and his wife Uncle Justin and Aunt Erica. The weather was abnormally warmer than it's been the past few weeks, but we had a great time!

I guess Will was doing some serious camera posing here.

Resting on mom in the monkey exhibit.

Playing the drums

Our friend Rachelle and her son Anthony met up with us. They are Zoo aficionados and helped us get around.

The view from up top.

Getting spoiled with Christmas presents from Aunt Erica and Uncle Justin

Energy For Life walk update

Team "Where There's a Will..." a few updates for our teams festivities!

Team t-shirts have been vetoed off my island, too hard this year. So, whatever the mood / weather strikes you on Feb. 4 - go for it! Get crazy if you want, make a shirt, wear a fun hat, feather boa or whatever suits your fancy. You also can purchase Energy For Life walk t-shirts on the website.

We are going to do green bandannas so everyone will be able to identify the group. Additionally, Will's school is making a banner and doing all the kids hand prints! THANK YOU!! If the mood strikes you to do a banner or sign, go for it!

My mom happens to know the owner of the Berryhill in the Heights on 11th street, so we're organizing some post-walk gathering at the Berryhill. So please join us for that if you can. More details coming, courtesy of the work of the wonderful Elyssa Horvath! I'm hoping it will be a time to visit and celebrate life!

I might pay you some money if you show up looking like these guys...

I Scream, You Scream...

We all Scream for Ice Cream!

Thanks to the amazingly awesome Beth Williams, there will be a fundraiser for UMDF in Will's honor on Tuesday, Jan. 31 from 5 - 10 p.m. at the Baskin Robbins on 43rd street across from Oak Forest Elementary school. (1354 West 43rd Street).

Not only did she talk to the amazing store owner, Mr. Shawn Salyers into giving UMDF 20% of all proceeds during that time frame, but she made the flyer. Thank you Beth for all your support and generosity. I can't tell you how appreciative we are!

Side bar, did you know that literally every year for Neil's birthday he wants (and gets) a chocolate peanut butter ice cream cake from Baskin Robbins? Come on over and by a cone, a pint or a cake - I will be doing a frozen yogurt in line with my diet commitment.

6 Months Ago Today...

Neil and I were sobbing hysterically in a doctors office. It feels like it's been a lifetime ago, but yet so harsh and raw.

Why Will? Why us? I'll never know.

Getting out of bed is still a chore most days. The dishes pile up and sometimes the house is totally wrecked - at least according to my standards. We eat because we're sad and most days I worry to put on mascara for fear of smearing it off in the car or wherever I end up crying.

But... Will is here and that makes us happy. He likes helping do the dishes too. He's an amazing angel that makes every day more real than the one before.

We love you Will forever and ever and always.

Where there's a Will...

Thank you all for signing up for the Energy For Life walk and donating to UMDF. There's still plenty of time to sign up since the walk is the first weekend of February, but it will be here quickly! So don't delay. See my previous post on the easiest way to register.

So far, team "Where there's a Will" has raised more than $3,000 and we have 51team members. I'm sure it doesn't shock many of you to know that I can be a tad competitive.  I heard that some team last year actually raised $50,000. Thankfully, I am not that competitive!

Special shout outs to those who have registered and/or contributed:
Amy Allen
The Bilski's
James Byers
Elliot and Tom Day and Jennifer Moore
Michael DeScioli
Deanna Draper
Allie Falender
Carrie Fielder
Lisa Flores
Jennifer Ford
The John Garcia's
The Gell's
Hank & Diane Goggan
Lisa Goggan and Tom Kaul
Kyle & Kristin Kotzebue
The Haas'
Ra-Nell Haas
Michelle Vinklarek Hanson *the first person to donate I might add!
Chad, Julie, Carson & Cameron Hayes
Archie, Judy & Katy Hayes
The Horvath's
Peyton & Murphy Jones
Justin & Erica Martin
Pat & Ed Martin
Carolyn Mayo
The McCormick's
David Morris & Anne Lewis
Cooper Mullin
Sara Murphy
Jason Parcell
Joanna & Sam Parigi
Carlo Pruneda
John Ramirez
Maidie Ryan
Caroline Schlemmer
The Sims'
Lisa Spence
The Starnes
Leila Thorne
Diane Treider
The Wende's
William White
The Williams'

I know many of you have been fundraising within your networks and I really appreciate it. If I missed anyone, please please let me know. I'm still trying to figure out how to navigate the website.

Also, a special thank you to Beth Williams and Elyssa Horvath. These two friends have gone above and beyond. Be on the look out for future blog postings of their efforts and FUN FUN stuff.

Vacation is Over

I suppose you figured out I decided to take a break from blogging. In fact, I was somewhat forced to take a break from a lot of technology as I had to get my work computer switched out over the break.

I've been on vacation from pretty much anything except our family and friends since Dec. 23. It's been amazing. I really tried to not look at email (ok, I looked, but I didn't open or respond to everything) and just be in the moment with Will and our family and friends.

That said, I have a lot of catching up to do - both at work, with our lives and with the blog.

This morning (Tuesday) we had a check up appointment with Will's mito doctor. After some confusion (not on our part) about who was supposed to be where and when, we finally got to visit with Dr. Koenig. It was brief, especially after a 3 hour wait, and really we didn't have any concerns about Will except some minor drooling which we do not need to "fix" - it was more of just a hmmm, we've noticed that it's increased.

We didn't want to go through all the painful discussions about health and the future, so we left it pretty short. By then, Will had enough anyways. I don't know a 2 year old who enjoys wearing a urine capture bag...

All in all Will has a "clean" health update at least in respect to having a fatal disease.

In other regards, we've decided that we DO NOT have a clean bill of health on our end. Neil and I both eat for comfort, and let's face it, we've needed quite a bit of comfort the past few months. So we've packed on the pounds in an unhealthy way.

So blog friends, we're going to pretend you really want to hear about our weight loss and you all can hold us accountable. Don't allow us to order bad food, graze at the office or "celebrate" with food. I've cleaned out all the bad stuff in the house and we're focusing on smaller portions, lean meat, veggies and fruit. I know we can do it, I just have to really focus.

Besides, I'm supposed to be a bridesmaid for a high school friend in March. Currently, I doubt the dress fits. I've got my work cut out for me. Just in case, does anyone have a really REALLY good seamstress? :-)

Happy New Year! I hope that 2012 brings us good health for Will, a healthy and positive pregnancy and many fruitful endeavors for Neil's company. Most importantly, I hope it brings us peace and joy as we continue to walk towards the great unknown.

Cheers to you and yours in 2012!!