Wednesday, February 29, 2012

Gluten free & BMs

A friend of mine was telling me that she suffered from constipation for a long time. Then she figured out she was allergic to gluten. Since she's gone gluten free, she's had regular BMs. (You see why I'm leaving this anonymous "a friend" - like she would want the blog world to know about her BMs)

I'm considering trying this for Will since he has such bad constipation problems, all though I don't have any reason to believe he has an allergy to it... just curious if anyone else has had this experience OR if any mito friends know squat about how this may or may not affect him.

I sent a query over to his doctor and her nurse said that gluten free won't hurt Will, but to remember that he likely has BM/constipation problems because he has slow motility because of the Mito. Which is very true. But perhaps incorporating some gluten free foods into our diet will help with the motility.

Any good website suggestions for gluten free foods / recipes?

On the BM front, our little pooper has had THREE days of daily BMs! I can't tell you the last time that has happened. On Sunday it was from a suppository, then he had BMs on his own at school in the potty - no accidents. Seriously, I can't remember the last time he's been this consistent. I think it's a good sign that he's really turned the corner from being sick recently. At least that's what I'm hoping. Plus, I started a new BM "treatment" - I'm alternating miralax and L-Reuteri. Maybe that's actually doing some good.

I really need to download more pictures off the camera... this was from Christmas. They love playing in Tom's truck!

Tuesday, February 28, 2012

Courage and an Unexpected Gift

I wanted to give my friend and her family some down time to privately process before I put this out on the blog....

During the past two months my good friend "Big" Sara's mother has been battling cancer. Her brief fight ended last Monday, Feb. 20. I've known Sara for 10 years, and at least half of that time we've spent under the same roof - sorority house, college apartment and most fun our post-college apartment. She's why Neil and I met and she's a dear friend. Please keep her and her family in your prayers.
Neil and I are beyond humbled that her family is asking those to honor her mom through a donation to the UT Mitochondrial Center of Excellence in Houston. (see her blog post below). I of course just broke down crying after we hung up the phone (multiple times last week). There are no words for this gift.

I still remember the wedding shower she hosted in her beautiful home for us and the place mats she and Sara gave us as a gift. I often think when I'm attempting to set the table that Carolyn was one classy lady who always knew how to set a nice table. I can only hope to do those place mats justice. (Thank goodness they are machine washable) :-)

She and her husband came over for a visit last Friday after the funeral. I am glad we were able to visit, cry, hug and laugh. As Neil and I reflected on the day we both felt like we were happy to have been there for them, but that it was unexpectedly extraordinarily difficult. The choices that Sara and her family made were the right choices, choices that I pray Neil and I don't ever have to make - as unlikely as that would be. I can only hope to be as courageous as their family. 

Call your mom and tell her you love her, read your kid that extra book and leave a nice note for someone you love. As the old Garth Brooks said (you know the country singer, not the weird new age guy going by Chris Gaines) "if tomorrow never comes..."

Tuesday, February 21, 2012 12:02 PM, CST
written by Sara Schoenfield Murphy
At Peace
We said goodbye to mom yesterday afternoon. She passed away about 2pm with all of us around her. After a very difficult morning with doctors and family and making some tough choices - impossible choices - mom's health issues quickly progressed and multiplied that morning and indicated this was not any quality of life to hold on to, by anyone's standards, let alone mom's - she had some high standards :) It was a very, very hard day through which we cried, laughed, and battled with emotions. While we are all at peace knowing she went without any pain and we were in the room with her, we are all up and down (as expected) as far as finding peace for ourselves moving forward, but we are moving forward together with you all.

We are so thankful and appreciative of the support from everyone. It's truly a blessing and a testament to how awesome mom was. The outpour has been great - moreso than we could have imagined.
In lieu of flowers, we ask that anyone willing donate blood in mom's name to the M.D. Anderson Blood Bank. If you prefer a monetary donation we ask that you give to an organization that supports a family friend's 2-year old son who was diagnosed with a terminal disease. Mom was touched by their story and very sympathetic to the situation and would love to have known she was helping them in this way (more info at bottom of post on how to donate).

We have lots of food here (much appreciated, thank you all!), so please do not feel you need to bring any over. I laughed and thought "In leiu of food, please bring alcohol." Haha, kidding of course because you know we have plenty of that! We just don't want the food to go to waste. It's hard to say 'please don't be generous' - apologies if this isn't the proper way to handle this?

A thousand thanks to you all for your thoughts, prayers, supportive words, and gestures. Our apologies if we have not responded or been in touch as much as we would like. Your love and support is strongly felt.

For donations:
Make checks out to The Memorial Hermann Foundation (memo line: UT Mito Center - Carolyn Schoenfield)
and mail to:
The UT Mitochondrial Center of Excellence
6431 Fannin St. MSB 3.151
Houston, Tx 77030

More info:
In the past year, a family friend's 2 year old son (Will Martin, son to Lori and Neil) was diagnosed with this fatal disease (Leigh's Disease). Similar to cancer, mitochondrial disorders are hard to diagnose and occur just as frequently. The UT Mitochondrial Center of Excellence conducts research to help local children receive better care and more opportunities to find a treatment and cure.

For further information on making donations, people can call the clinic at 713-500-7164 and press option 1 to speak with Melissa Knight.

Monday, February 27, 2012

Sergey Brin and his DNA
Neil found this article and since my mom has Parkinson's and it's closely related to mitochondrial disorders I thought it would be relevant to our blog. $50 million to "move the needle" on Parkinson's research... I wonder how I could convince someone like Bill Gates or Warren Buffet to realize they have mito - good or bad - and it's worthy of just $5 million.

Several evenings a week, after a day’s work at Google headquarters in Mountain View, California, Sergey Brin drives up the road to a local pool. There, he changes into swim trunks, steps out on a 3-meter springboard, looks at the water below, and dives.

Brin is competent at all four types of springboard diving—forward, back, reverse, and inward. Recently, he’s been working on his twists, which have been something of a struggle. But overall, he’s not bad; in 2006 he competed in the master’s division world championships. (He’s quick to point out he placed sixth out of six in his event.)

The diving is the sort of challenge that Brin, who has also dabbled in yoga, gymnastics, and acrobatics, is drawn to: equal parts physical and mental exertion. “The dive itself is brief but intense,” he says. “You push off really hard and then have to twist right away. It does get your heart rate going.”

There’s another benefit as well: With every dive, Brin gains a little bit of leverage—leverage against a risk, looming somewhere out there, that someday he may develop the neurodegenerative disorder Parkinson’s disease. Buried deep within each cell in Brin’s body—in a gene called LRRK2, which sits on the 12th chromosome—is a genetic mutation that has been associated with higher rates of Parkinson’s.

Not everyone with Parkinson’s has an LRRK2 mutation; nor will everyone with the mutation get the disease. But it does increase the chance that Parkinson’s will emerge sometime in the carrier’s life to between 30 and 75 percent. (By comparison, the risk for an average American is about 1 percent.) Brin himself splits the difference and figures his DNA gives him about 50-50 odds.

That’s where exercise comes in. Parkinson’s is a poorly understood disease, but research has associated a handful of behaviors with lower rates of disease, starting with exercise. One study found that young men who work out have a 60 percent lower risk. Coffee, likewise, has been linked to a reduced risk. For a time, Brin drank a cup or two a day, but he can’t stand the taste of the stuff, so he switched to green tea. (“Most researchers think it’s the caffeine, though they don’t know for sure,” he says.) Cigarette smokers also seem to have a lower chance of developing Parkinson’s, but Brin has not opted to take up the habit. With every pool workout and every cup of tea, he hopes to diminish his odds, to adjust his algorithm by counteracting his DNA with environmental factors.

“This is all off the cuff,” he says, “but let’s say that based on diet, exercise, and so forth, I can get my risk down by half, to about 25 percent.” The steady progress of neuroscience, Brin figures, will cut his risk by around another half—bringing his overall chance of getting Parkinson’s to about 13 percent. It’s all guesswork, mind you, but the way he delivers the numbers and explains his rationale, he is utterly convincing.

Brin, of course, is no ordinary 36-year-old. As half of the duo that founded Google, he’s worth about $15 billion. That bounty provides additional leverage: Since learning that he carries a LRRK2 mutation, Brin has contributed some $50 million to Parkinson’s research, enough, he figures, to “really move the needle.” In light of the uptick in research into drug treatments and possible cures, Brin adjusts his overall risk again, down to “somewhere under 10 percent.” That’s still 10 times the average, but it goes a long way to counterbalancing his genetic predisposition.

It sounds so pragmatic, so obvious, that you can almost miss a striking fact: Many philanthropists have funded research into diseases they themselves have been diagnosed with. But Brin is likely the first who, based on a genetic test, began funding scientific research in the hope of escaping a disease in the first place.

His approach is notable for another reason. This isn’t just another variation on venture philanthropy—the voguish application of business school practices to scientific research. Brin is after a different kind of science altogether. Most Parkinson’s research, like much of medical research, relies on the classic scientific method: hypothesis, analysis, peer review, publication. Brin proposes a different approach, one driven by computational muscle and staggeringly large data sets. It’s a method that draws on his algorithmic sensibility—and Google’s storied faith in computing power—with the aim of accelerating the pace and increasing the potential of scientific research. “Generally the pace of medical research is glacial compared to what I’m used to in the Internet,” Brin says. “We could be looking lots of places and collecting lots of information. And if we see a pattern, that could lead somewhere.”

In other words, Brin is proposing to bypass centuries of scientific epistemology in favor of a more Googley kind of science. He wants to collect data first, then hypothesize, and then find the patterns that lead to answers. And he has the money and the algorithms to do it.

Wednesday, February 22, 2012


Peace. I've been thinking about this word a lot lately.

Peace be with you
Rest in peace
Peace out

Definition of PEACE according to the dictionary:
1: a state of tranquility or quiet: as a : freedom from civil disturbance b : a state of security or order within a community provided for by law or custom <a breach of the peace>
2: freedom from disquieting or oppressive thoughts or emotions
3: harmony in personal relations
4a : a state or period of mutual concord between governments b : a pact or agreement to end hostilities between those who have been at war or in a state of enmity
5—used interjectionally to ask for silence or calm or as a greeting or farewell
at peace : in a state of concord or tranquility
I was able to make it to church tonight for Ash Wed. services and had a few minutes to further reflect on this word and I realized that peace is actually what I desire most for me, Will and Neil - and of course all our loved ones.
Happy, joy, sad, bitter, angry, helpless, overwhelmed, worried, anxious, fear, grief - all of these things come and go literally every day and are easy to achieve. But peace - what is that? Is it a fleeting moment in time, do I have peaceful moments?
How can I be AT PEACE in my soul? That's what I want and think I need to strive for - for all of us. I want to find a way to be at peace with our new normal, being ok that every time I hug and kiss my baby goodnight that it's bittersweet. I want Will to have a peaceful passing. A peaceful home - no matter if where we sleep that night is at a hospital or our house.
I just want to be "ok" with our life and find a way to just be at peace with it. I think I'm kind of getting there, I don't know if I ever really will, or even if I should. I want to have and will have laughter in our lives, joy and even sadness. I've realized our life is even more full because of this pain.
Peace is probably one of the most elusive state's of being. Best of luck to all of us.

Ears Update

Monday, Feb 13 - Hospital admission
Tuesday, Feb 14 - Discharged
Friday, Feb. 17 - Pediatrician ear check; showed that the infection was still there and should have been looking much much better by then. So, we added an additional antibiotic
Tuesday, Feb. 21 - Go back to the pedi to get the ears check. It's in the process of healing, but not totally done. After some discussion, we decided we had a lot of things working in our favor: the pedi said we could basically show up whenever we want on Friday and Saturday morning and he would work us in; his snot wasn't green anymore, we still had the antibiotics from the hospital through Thursday and his gait seemed to be improving. So, we will watch Will closely and on...
Monday, Feb. 27 - consult with ENT doctor who apparently works closely with Dr. K. and "gets it"

If I had my wish, we'd have tubes put in on Tuesday, Feb. 28. HA! I'm just hoping that his ears. I'm ready for this little ear-ittating (get it, irritating? haha) adventure to end.

Will also needs to get some listening ears. Our little buddy has been putting on quite the "terrible twos" show and we're cracking down at home and school. He was in time out multiple times this morning and twice at school. When I picked him up today, I sat down at a table with one of his teachers and Will and we had a little chat about putting on some listening ears. We'll see how that works out. 

Age 9 months - when Will had his first ear tubes put in. And also sported quite the mohawk.

Wednesday, February 15, 2012

The Tale of the Never Ending Ear Infections

About 8 weeks ago, Will had an ear infection that we were able to catch it before the temperature came for a variety of reasons. His cough, congestion, green snot and wonky walking were big indicators and we made it to the pediatrician. Then two weeks ago another one popped up and we were able to catch it yet again! This junk has been following him around for the past few weeks and on Monday our luck ran out – the temperature came.
After consulting with Dr. Koenig’s nurse and Dr. Koenig we headed for the ER Monday morning. We were admitted afternoon and stayed till late Tuesday. It was the best thing for Will – fluid/IV, rest, and more aggressive meds.
Essentially, we had ear tubes put in when Will was 9 months old after multiple, back to back double ear infections. Initially the infection was so bad that we had to go weekly for about four weeks to get his ears / tubes drained – side bar story, that was not fun. They had to strap in to something that looked like a straight jacket and then used what looked like an acupuncture needle down into his ear to drain it out. So, fast forward to almost 25 months later and the tubes are no longer in place. That’s normal. They are supposed to fall out.
So here we are… a mess of ear infections with no tubes, a resistance to our “favorite” antibiotic augmenten  and our second hospital visit. That means we are going to get tubes put back in, which I’m a huge fan of. This means the infection will drain out of his ears instead of sitting in his ears growing.  We have an appointment set up for Friday to do a check in with the pedi to make sure this new antibiotic is working then another appointment with an ENT to discuss tubes.
So, we need to get all this crud out and Will healthy so that we can do tubes asap.
The hospital visit was overall good. Will did great and so did Neil. I had a big huge project due by Monday at 5 p.m. and had to go in to finish it. About 3 p.m. my manager was able to pick it up and get it out the door. So, I raced over to the ER to meet up Will and Neil. It sounds like the ER was pretty traumatic… they had to get about five nurses to hold Will down to do an artery blood draw from both his wrists, then drew six vials of blood, put in the IV and finally he got a break. It sounded like he was crying for me the whole time as well which of course makes me feel super guilty, sad and overall sucky. Plus, Neil also is sick. Wonder where he got it from…
If you’ve read the blog at all, you probably understand that mito is a messy complicated disease. Well, just because doctors go to medical school doesn’t mean that they understand it either. Case in point, the ENT that came into the room at 10:30 p.m.  and turned on the light, actually two lights. Yes, 10:30 p.m. well after the time Will and I both have gone to bed. I got the vibe that essentially didn’t understand why we were even admitted. And left the conversation with the commentary of, so, basically he has a cold and an ear infection? Yup, you a-hole. A cold. A cold that could leave a big ugly lesion on his brain and tomorrow he could wake up and not be able to walk. So, screw you.
I mentioned it to the awesome on-call doctor and she said, “yes, he was confused. Clearly he didn’t listen to anything I said before he went in to the room.”  At least one more person was educated to some extent about mito and maybe the next person will have a different experience.
I shouldn’t whine because really this was an “easy “ER trip. It’s just Neil is sick. Since this is technically "my blog" I can lovingly say that his hacking cough is driving me (and him) bonkers, Will is sick, I’m tired, Will hates this new medicine – he has to take 10 MLs of it orally – and the past two nights he has gagged and puked up a little bit. He had a nasty loose stool all over the car seat. I’m behind on a lot of stuff – appointments for Will, getting the rug cleaned that our dog smeared poop all over. It’s been sitting on the porch for like a month. As the super annoying MTV character Snooki says, “waaaa”.  I just want the snot to go away.
On the positive side, Will has been a real sweetheart. Just as sweet and loveable as can be. Children’s Memorial Hermann is a teaching hospital so whenever a doctor comes in, they bring about 20 more in. Since we were in isolation everyone had to wear masks and gowns. It didn’t even phase him. He just took it in stride and told everyone hi and bye and thank you.
The child life specialists at the hospital brought in some fun toys - Will kept pushing this dog around saying, actually YELLING, I lovvveee my doggie. It kept him occupied for a long time. Not much else you can do hooked up to the IV and in isolation.

Friday, February 3, 2012

It's Official

We have busted the $20K mark!! THANK YOU! THANK YOU!! THANK YOU!

The latest contributors:
Robert Barkley
Kathy Burt
Lydia L. Gumm
Kristen Janssen
Laura Jirele-Borleske
Trey Lynn
Erik Olson
Pete Winckler


A special thank you to inkDOTS for creating and donating the sign for team Where There's a Will... There's a Way.

It's waterproof, so everyone be sure to look for it at the walk on Saturday! Our team will gather under the sign.

Thank you for supporting our team and thank you to Elyssa for securing this donation.

Holy Moses!

I am humbled beyond words... we've raised nearly $20,000. $18,300 on the Energy For Life website and $1,200 at the Baskin Robbins event.

All I can say is THANK YOU.

If you are planning on walking Saturday, please be sure to pack an umbrella or rain gear. Not sure when the front will hit either.As the Houston saying goes, just wait five minutes and the weather will change in Houston.

We've had a flurry of new sign up and contributions in the past 24 hours... THANK YOU!
Deborah Anderson
Mark Browne
Craig Bullock
Cord & Daria Conlan
Doug Crosson
Mark & Patti Day
Mary Day
Angela Denslow
Elisa Diaz
Jeff Fahrenbruch
Mari Farmer
Laura Fanelli
Ryan, Ashley, Charlie Farrell
Kevin Fleming
Stephanie Fleming
Sandy Gonzaba
Michael & Jennifer Hamlin
David Hardin
Monroe Helm
Eric, Kelly & Rachel Herrera
Bill & Carolyn Hlozek
Michael Holley
Mike Jan
Maura Kolb
Sherry Lantis
Mark Luchsinger
Maria Teresa Luis
Rick Manuel
Justin Martin
Scott McDonald
Anne McLaughlin
Joseph McMullen
Hugh Morton
Justin Pickard
Travis & Amy Piesker
Kittie Perkins
Darcella Roberts
Derrick Roberts
Aaron Skipwith
Donna Simmel
Tracy Vigil
Joyce Walter
John Williams
Charmaine Winters
Will and "baby" at the Baskin Robbins event. He loves that baby cousin of his so much that he calls him brother. (Is that a hint for mom and dad Will? haha)

Thursday, February 2, 2012


I've been preoccupied with other stuff and haven't downloaded pictures off the camera recently. Finally I did it tonight and wanted to do a picture post from a trip we took with some friends to Galveston for the weekend.

Will had an absolute blast and still talks about going to Galveston again and to see his girlfriend, Caroline.

I'll let the pictures do the talking....

Playing doctor on the porch with James. Will knew all the tools and rarely wanted to remove his stethoscope from his ears.

I promise his ears do not stick out that far, just further illustrating his love for medical tools - unless it's the equipment you use to take blood. His daddy doesn't like that stuff either. :-)

At the park

Riding on the back of the golf cart.

Neil & Craig got in a lot of good football watching time while we were out exploring.

Double mohawks.

Will helping the guys get breakfast ready. Craig had his hands full!

Putting raspberries on their fingers.

My personal favorite picture of Ms. Caroline!

Went to the Moody Gardens aquarium - the coolest thing we saw were the penguins eating.

Ice cream on the Strand.

Trying on Caroline's snow bunny boots.

Making S'mores

Shhh! Don't tell on us, we were playing with fire inside.

Eating S'mores

Wishing he had a S'more :-)

Good morning!

and good bye.

Wednesday, February 1, 2012

31 Flavors and Eating

Thank you all so very much for your support! Last night at Baskin-Robbins, the line was long, the kids were on a sugar high and the adults were very giving. Through a donation jar and the 20% of proceeds on purchases, we raised a little more than $1,200. This should bode well in helping us exceed the $15,000 goal for the upcoming walk.

The super friendly Baskin-Robbins scoopers and the store manager, Shawn (upper right). If you go into the store, please tell them thank you!

If all these medical bills ever put us in a cardboard box, we'd have a great little beggar. Will snitched icecream off everyone there, including Dee Dee.

This exceeded my wildest dreams and expectations. Thank you all so much for posting on Facebook, telling friends and showing up, despite the rain and general yuckiness of the day.
A special, gigantic thank you to Beth Williams, Elyssa Horvath and my mom! They surprised me with green wristbands that say “Where There’s a Will… There’s a Way” to help raise money and awareness. Without these three ladies, last night’s event would have not even happened. Thank you so very much.
Thanks to those who have signed up to walk and/or contribute to the Energy For Life walk. I can’t believe it’s on Saturday! Shout outs to the Sims’ (Josh & Sheila), the Tsai’s (Ken and Janae) and the Murphy’s (Daniel and Sara) that have collectively raised nearly $4,200. WOW! That’s an incredible amount of money and we so appreciate your efforts.
Aneesh, Meenal & Anand Balakrishnan
Crystal Cao
Paul Cheng
Sophia Cheng
Chad Gardner
Davin Huang
Peter Lee
Mike, Amber, Evan & Cade Lewis
Annie Lin
Karen Lin
Rochelle McCall
Benjamin Ong
Jared Parcell
Matt Parcell
Dani Ramirez
Amanda Royle-Squires
Bill & Carolyn Schoenfield
Jaedeanne & Ruby Shaver
Tony Shelton
Lindsey Thomas
Anthony Tsuei
Clint Woods
My lame attempt to get some protein in Will before all the sugar.