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.