Monday, June 25, 2012

My Hero

A belated Happy Father's Day to all you awesome dad's, but most importantly to my awesome husband. I couldn't imagine facing this world without you.  

A Guest Post by Daddy Bear:

I decided to attend Will's gymnastics class about 3 weeks ago and it was one of the most deeply emotional experiences for me.  I have the benefit of knowing that my son isn't going to be an Olympic athlete so can quietly avoid the group of parents engaged in the passive aggressive circle jerk of asserting that Will has already placed out of college level organic chemistry, throws a baseball farther than the kids 5 years older than him and is, naturally hung like a centaur.  I digress.

Will's gym teacher is a fantastic guy named Mr. Glass.  Mr. Glass goes to great lengths to help Will do the same things the other kids do.  Mr. Glass had the kids start off with a puppy dog walk, which Will seems most adept at relative to the other kids.  The best part was as he got to the end of the mat, he jumped up and ran straight at me with a huge smile, throwing his arms around me and exclaiming "I DID IT!". I hugged him up off the ground and gave him a big kiss on the cheek and also exclaimed "YOU DID IT" and soaked in what was obviously one of the greatest moments in my life. 

It's hard to have these moments and not automatically think that I will never get to see him wear a suit to work or watch his kids do gymnastics.  I swallowed hard determined to stay there and make his day.  He went back to the end of the line and sat down.  I watched one of the other kids go and looked back at the line and Will was staring at me and as soon as we caught eyes, he smiled from ear to ear.

Mr. Glass helped Will do somersaults when the other kids did and hand stands when the other kids did.  It was great and Will was so proud to have me watch it all.  Next up was each of the kids running backwards down the mat.  Will was up and this was obviously going to be very difficult for him.  Will stepped sideways, stumbles and shuffled backwards in an effort that took about 45 seconds whereas the other kids generally finished in 3-5 seconds.  You could see the sheer will in his face and he concentrates and fought the entire way down the mat.  About halfway down the other kids started chanting "Go Will Go, Go Will Go" while clapping their hands.  Mr. Glass was laser focused on Will and was also clapping and chanting. 

The look on Will's face as he fought his way down the mat reminded me of a conversation his doctor had with Lori recently.  She told Lori that she was comfortable with us now and told Lori that on our first visit back in Feb. 2011 - about two months after Will started walking - that after watching him walk  - she thought what he was doing was not walking. 

She doesn't know what it was but she saw a little boy who saw the other kids walking and decided he was going to get up on those legs and do the same thing even as akward and painful as it was for him. 

As Will finished up he ran over to me and exclaimed again that he had done it.  I squeezed him hard enough that it probably should have hurt him, kissed him on the cheek, put him down and quickly excused myself.  I made it to the car quickly and without making eye contact with anyone and shut the car door just in time for the first tear to fall off my cheek.  F'ing brutal.  How could I be such a wimp, sitting in my car crying while my little boy was putting up the fight of his life just to do the simple things other kids dont have to think twice about and he was doing it with a pearly white grin. 

The boy is my absolute hero and I look at him every day and think how incredibly lucky I am to have had that day with him as I consider life on the other side.  I'm going to do whatever it takes to keep my little hero here with us and like I told Lori, if I died pennyless under a bridge but a treatment or cure was discovered that gave Will a long normal life, I would die the happiest person that ever lived.

Will singing Happy Birthday to his Daddy

Friday, June 22, 2012

The Rocket

Multi-part story here... It's a good way to end the week!
Part 1: For Will’s third birthday in April two of our good friends and Neil’s fellow Longhorn alum, Jody and Parcell, gave Will a UT orange baseball bat with his name on it. We all loved it (even though I went to A&M) and Will really liked to hammer the bat on the floor.
Part 2: We have a really great street of neighbors; there are three in particular that Will loves to visit – Ms. Kathleen, Mr. Marvin and Ms. Stacey. He’s like the busy body of the street. Points out when someone’s car is there or gone, always wants to visit, asks if he can go see their pets and so on.
Part 3: Ms. Stacey happened to be part of Roger Clemens trial team. She does all the visuals that are used during a trial - exhibits and so on. Clearly she's awesome. We asked if she thought it would be ok to ask Roger Clemens if he would sign Will’s new bat. She said, “sure!”
She’s been in DC for a long while now and came back after the case went to the jury. Our schedules finally matched up for the day after he was acquitted! We went over to her house and picked up the bat. Will was definitely having a tired day and had a bit of an attitude, but we were excited.
When I shipped the bat to DC, I included a note to Roger Clemens explaining our situation and thanking him for signing the bat. Stacey said that he read the letter aloud to the trial team and his wife at lunch on the day he signed the bat.
So, not only do we have an awesome bat, but now Roger Clemens has heard of Mitochondrial disease! Maybe one day it will become more than just knowing about it.
Thank you Roger Clemens, Ms. Stacey, Jody and Parcell for giving Will an incredibly awesome gift!
I left our camera at my office so the pictures are from the cell phone, not great quality, but you get the idea.

The big reveal

Checking out the personalized message from The Rocket to Will

The autograph

Giving us some attitude.

Finally! A smiling happy picture of all of us.

 Excuse all the "devil" eyes - I couldn't get the editing "red eye" option to work.

Thursday, June 21, 2012


One of the touchiest subjects I have come across as a “normal” parent and a parent of a special needs child is Vaccines. In the session at the UMDF Conference on vaccines there was clearly an air of distrust, frustration and emotions towards the whole conversation.
Dr. Pacheco point blank said, “all my patients will be vaccinated” – it seemed that this statement turned a lot of people off. What I kept thinking was, I wish she would have said, “all my patients will be vaccinated IF and only IF it’s done in a safe and controlled environment”
I met a delightful friend at the conference whose daughter has a suspected Mito disease and she also has a wide variety of other issues mostly related to food. Kristi is a chemist by trade and with her scientific background she is able to dissect and better share Mito related issues. She shared this blog post with me on her research related to vaccines,
So, after my own research and listening to my “mommy gut reaction” I have formed my opinion on vaccines for Will.
-He’s never had a bad reaction – before or after diagnosis of Mito
-We know he has a Mitochondrial disorder
-There is evidence that vaccine injury is real
-Why risk further neurological damage?
-Why risk a serious illness to an already compromised immune system?
-Net result: Vaccinate with care
I just saw this article on the number of parents delaying vaccines.
One of the statements is that it’s easy for parents to fall behind on a delayed schedule because you have to make multiple doctor visits. My response, if you care that much about putting your child on a delayed schedule, then you should be even more aggressive on achieving a successful outcome with that schedule.
Parents have to make a choice for their children’s health, if you are a parent to a normal healthy child that has no family history of problems and exhibits no health problems then one could assume there shouldn’t be a problem with a normal vaccine schedule. But, there’s always a but, what if you are one of those few vaccine injured families and you just don’t know until it happens. UG!
We take risks on behalf of our children daily. We strap them into poorly installed car seats, we shoot them up with Tylenol when they have a fever so we can get a few hours of work in before day care calls, we let them play in the street, we take them swimming in the deep end, we turn our back for one second on the changing table – everything is risky and could produce permanent damage to our children.
As a Mito Mom, I have realized we have very little control over what happens with Will’s body. I can’t keep him in a bubble, I can’t shoot him up with Tylenol to fix a fever and so on. BUT, I can control what goes into his body and how – vaccines included.
I guess my “mommy gut reaction” is that there is no good answer; this is just one problem I have put to rest in my head. That’s a nice feeling.

Wednesday, June 20, 2012

Saturday Night & Sunday

Much thanks to the awesome Andre, Bridgette and Cooper clan for hosting us for the night and giving us what is likely the best tour of the area you could have in under 24 hours. Anyone who knows this family knows they know how to do it up right!
They whisked us away from Bethesda and Mito-land off for beer, crabs and fun. We headed for Annapolis, Maryland to Cantlers for some Maryland blue crab. I think my favorite part was watching their son Cooper, who is about four months younger than Will, crack crab. It was hilarious and sweet.
There was not only a wait for a parking spot, but about an hour and a half wait for a table. Again, the K's know how to do it right and had prepared four tailgaiting chairs and a cooler of beer.
I was finally relaxed!
After that we did the driving tour of Maryland’s capitol and we went back to their home in Vienna, Virginia.
Spilled Pina Colada would never go to waste with our crew!

Cutie pie Cooper!

Behind us is Chesapeake Bay

Maryland Bluecrab with Old Bay seasoning!

Let's get cracking people!

The next morning came too quick and we ate some breakfast and then packed up for DC. It was so sweet, they got Neil and Father’s Day card and again, loved watching Cooper’s reaction to the musical card. Neil’s was pretty good too.
We did part 1 of the driving tour of DC then ventured off for brunch / lunch at Old Ebbit’s Grill. It’s so close to the White House that we walked over for some pictures. We found a gift shop and got a little book on DC for Will.
Then we went on for part 2 of the driving tour and off to the airport. Thanks again to the K’s for the awesome trip. I’m glad we were able to visit them while on their corporate tour of duty.
I was ready to be home and I think Will was too. He spent the week with Neil's parents and the weekend with my parents. I know he had a blast and so did we, but there is nothing like being home all together.

In front of the White House

UMDF 2012 Conference: Saturday

Session 1: Navigating the Medical World with a Child with Mito, Jodie Vento
·        This session offered the opportunity to create yet another to-do list! This one is more about being and staying organized with health history, medical records etc. It’s going to take a while to compile everything even though I already have a large portion done. I think it will help in the long run, but goodness it’s going to be tedious.
·        My favorite tip was: Be nice. Yelling, screaming, being demanding never gets you anywhere. The doctor’s staff will tell the doctor if you are mean.
o   I think you can be nice and ask for things, otherwise if you don’t your job as a parent advocate is pointless.
Session 2: Nutritional Considerations Lynne Wolfe
·        Miralax: there is a recent running debate on the extended use of Miralax. For Will, it works. Do I want him to stay on it forever, no. But that might be our only choice. So, here we stay and experiment getting him off it when things are going well. Note, most people mess up the dosing and it’s 1 gram / kilo of body weight. 17 kilos is in 1 cap full of Miralax. So, likely I am under dosing Will which says that likely he may not actually need it. We shall see.
·        It’s suggested that Mito kids eat a high protein diet. Carbs make mito worse because it can inflame something. I didn’t quite catch what, but I figure the basic principle is keep the carbs low. Shocker….
·        We are likely going to include a bed time snack for Will now as it should help his body recover while he sleeps. This time you want it to be a good carb and a protein. The good carbs like peanut butter or cheese will stick with him through the night and the protein will help break it down.
·        Someone suggested cornstarch with pudding as a good option, but it causes constipation so that we shall avoid.
Session 3 & 4: Living With Mito Panel discussion AND Ask the Mito Doc. I combined these sessions because most of it was patient specific issues and questions. I learned bits and pieces of stuff, most of which I’ll capture somewhere else.
Session 5: Summary of the Clinical and Scientific Meetings. This conference is somewhat unique in that it combines researchers, doctors and patients/families. So earlier in the week there was a series scientific and clinical meetings where a variety of super highly technical “stuff” was presented and discussed. This session was to break it down for the families as to what was going on.
·        My favorite nugget of news was that if the Mito complex work load increases then so does the output in Complex 5. So in theory, if Will is exercising and moving around his Complex 5 might push out some more ATP. His mutation affects Complex 5. Kind of an interesting thought, increase exercise increase ATP. But where is the line where too much exertion actually hurts him. I’ll file this in my “Things that make you go hmmm” file.
·        Exome sequencing and Next Gen testing: since we have a diagnosis I didn’t pay as much attention to these issues.
o   Exome testing is brand new with a high volume of output, but not a high volume of help. It’s too much information that researchers and doctors do not yet know how to analyze. Plus, it takes 3+ months to get results
o   Next Gen is kind of the same thing, but focuses on a more narrow panel of DNA.
o   The long and short of it is that we are close, but it’s not ready for mega-consumer use yet.
I promise the next post will be more fun and have pictures! Did you join the UMDF advocate page yet? Please please consider doing this. It's the only way our voices will be heard.

Tuesday, June 19, 2012

UMDF 2012 Conference: Friday

Friday: Conference Day 1
Session 1: Welcome & Managing your Symposium Experience. Heard from UMDF Chairman Dan Wright, who incidentally is from Dallas, Texas, as well as Chuck Mohan, UMDF CEO.
Session 2: Maximizing our Mitochondria on Capitol Hill and with National Institutes of Health (NIH). Director of NIH Office of Rare Diseases, Stephen Groft.
Both Session 1 and 2 were basic info on UMDF, what happened the day prior for those who couldn’t attend and articulated the process that researchers must endure to even prove treatment might work. On one hand I appreciate groups like the FDA – it keeps us well regulated – but on the other hand I wish they didn’t require so much red tape. It just makes everything painfully slow, especially to those like us.
Session 3: Mitochondrial Disease – What is it and what are the potential therapies out there? By Sumit Parikh, MD.
I wish I could have stayed for this whole session. I had to jet out early to catch the next one on EPI-743. Dr. Parikh is extremely well-spoken, animated and talks in layman’s terms without being condescending. Things I learned:
·        Our Mito actually form super complexes. Think of it like a highway. They form these incredibly long or short complexes for our energy to travel out of Complex 1 – 5.
·        Mito can “talk” to the nucleus and other mitos. The mito is tethered to the walls of our cells. This talking can lead to problems which leads to disease.
·        Primary Mito is an mtDNA or DNA problem; Secondary Mitochondrial diseases is something like Parkinson’s or Cancer. The mito disease is secondary to the other diseases but plays just as important of a factor.
·        As our Mito age and die, that’s why people die of natural causes.
Session 4: Clinical Trials and EPI – 743. Speakers included: Greg Enns (EPI-743 /Stanford), Ron Haller, Michio Hirano, Fernando Scaglia and Peter Stacpoole (Phase 3 of CoQ10 and how it works in Mito kids & Phase 3 Trial of Dichloracetate for Pyruvate Dehydrogenase Complex Deficiency / University of Florida).
Side note, there was a session on “The Mito Cocktail: One Size Doesn’t Fit All” that I wish I could have gone to as well, but it was at the same time as the Clinical Trials.
·        Basically, there isn’t any updates. There is cool stuff being done, but nothing is close to being available on a consumer level for treatments. You can google the names I listed above and find out their exact research projects.
·        I did have my first outright public crying episode in this session. Dr. Enns showed video footage of a EPI – 743 patient. Baseline test he could only walk with the extreme support of his caregiver. Week 6 he took his first 3 independent steps. Week 13 he walked five steps by himself. It was the same room we were in with Will and did these exact same things. I wasn’t expecting that reaction, but it was incredible to see his family and the reaction in the room was palpable. Everyone wants EPI and I feel guilty telling people we’re on it when their child isn’t. That’s another post for another day.
Lunch: We were asked to sit by geographies. I happened to sit next to one of the researchers. I can’t remember his name, but he is at Southwestern studying/researching the affect Cancer and Mito have on each other.
·        He said he’s never seen /been to a conference where the MDs, researchers and patients/families can interact. We both agreed it’s really cool.
·        He said he’s never seen an organization (UMDF) give as much money away as they do for research. Secretly, I’m always skeptical of groups and how they spend their money, UMDF included. It gave me great peace to know hear from someone else that UMDF is extraordinarily judicious in how they spend dollars. Only 6 cents of every dollar goes towards operating costs (salary etc.). The remainder goes to funding research for treatments and a cure.
·        I had lunch with a mom named Tina and her sister. She approached me at the conference because she reads our blog. It was awesome to meet her and learn more about her mito-affected son. Tina – get on facebook! J
Session 5: How Does Mito Affect GI Motility, Leonel Rodriguez MD
·        This was one of my favorite sessions. One of Will’s biggest problems is constipation.
·        Did you know:
o   That the stomach operates on its own system? The Enteric Nervous System. It sends a signal to the Central Nervous System for the stomach to open. Everything else operates independently of the body. BUT, that system and organ also have the possibility of bad mito.
o   Tissues that are highly dependent on oxygen include smooth muscle – our stomachs.
o   He took us through a flow chart of the gut and what you can do when something isn’t working.
o   He divided the stomach into three parts as it relates to treatment: Foregut (esophagus and stomach), Midgut (small intestine) and Hindgut. The Foregut also grinds everything into a soupy like mixture which goes through the intestines and then makes its exit.
o   The rectum is regulated by the spine
o   Probiotics help keep the bacteria out of the colon and will fight for space, thereby encouraging the colon to empty. It’s not good for the colon to be stretched, as Will’s once was. We’ve managed to get most of this under control with a probiotic!
o   I was told a probiotic called, Bifiado bacterium would also help keep the colon cleansing going. (Thanks Tina!) We are going to try and include it in our routine.
Session 6: Immunology Issues in Mito Kids, Dr. Susan Pacheco (*Disclaimer, she also is Will’s doctor)
·        Again, very interesting conversations here. What’s most alarming is that a description of mitochondria and immune function is ABSENT from ALL major reviews and textbooks on mito medicine published so far. So, we’re playing in a new field for the most part.
·        There was much discussion on vaccines, IVIG and bloodstream infections. I am going to save this topic for a separate post.
Session 7: Financial and Legal Issues.
·        This session was actually for child to adult planning. Like when you turn 18, what happens? I wanted to attend because we want to set Will up with a special needs trust and we also all need living wills. So, I learned some interesting information about how to protect your financial resources while not losing government funded healthcare. It’s sometimes a matter of pennies that could put Will at risk for being “too wealthy” to receive programs such as Medicaid.
·        I have a lot of to-dos from this session including: living wills, burial plots, special needs trust, life insurance outside of my employer, letter of intent, setting up a special needs trust advisory in case something happens to both of us and so on…
Dinner / Reception: Keynote speaker William Gahl, National Institutes of Health, Undiagnosed programs.
·        I didn’t take notes on this session because I was burned to a crisp from the previous sections. I wish I had recorded it though. He was an incredible speaker.
·        The basic conversation dealt with rare and undiagnosed diseases such as mito and how the NIH researches, funds and discovers answers. Who knew?
So that was Friday. I sat with a few new Mito friends including two people from Georgia. The woman has a son who at age 22 had adult onset of Leigh’s. He’s now 25 and you would never know he is sick. That shocked me. Then to my left was a man who has a 21 month old son who has clinical symptoms of Leigh’s (not confirmed through testing) and his son was in the hospital that week and has many problems. Just goes to show how diverse one disease can present itself and we all, in theory, have the same problem.

UMDF 2012: Day on the Hill

Thursday: Day on the Hill
As it was explained in our Wednesday evening training session, we have two asks for government. And, I have one ask for you - to contact your local reps and ask them to help.
1-     For those in the House to agree to sign on to a Mitochondrial Disease caucus.
2-     For those in the Senate to co-sign Senate Res. 490.
More than 230 members of the UMDF fanned out across Capitol Hill on behalf of all of those whose lives are touched by mitochondrial disease. We visited more than 80 congressional offices and 42 offices in the U.S. Senate.  
Earlier this month, Representatives Anna Eshoo (D-14-CA) and Tim Murphy (R-18-PA) founded the Mitochondrial Disease Caucus. The caucus will serve as a forum for members of Congress and their staff to learn about mitochondrial disease and related illnesses. The Mitochondrial Disease Caucus will provide support for the efforts of agencies such as the NIH and the Department of Defense to support cutting edge research into mitochondrial disease toward the goal of developing therapies and cures for specific diseases and new insights into many major disorders. You can see the letter that was sent to Congress from Representatives Eshoo and Murphy here.
On Tuesday, June 12 2012, Senator Barbara Boxer of California introduced Senate Resolution 490. Recently, the National Institutes of Health and UMDF conducted a workshop that explored the opportunities and barriers that exist in primary mitochondrial disease research. The result of this workshop was the development of a White Paper that applauds the NIH for its role as a leader in the field as we move forward. It also recommends enhanced emphasis on basic mitochondrial research; supporting research that will provide the basis for drug development, improved mouse models, and next generation sequencing; expansion and support of stable, long-term patient registries and a biospecimen repositories; and the creation of a working group to develop a system for continued interaction with NIH Institutes and the extramural community. Sen. Boxer's resolution applauds the NIH for this effort and encourages them to follow the recommendations made in the White Paper. You can see the resolution here.
So, now I have a favor to ask you. Please contact your local representatives and ask them to join the Caucus or Co-sign Senate Res 490.
Log into the UMDF ACTION CENTER (if you don't have a user name and password, simply sign up).
ASK YOUR SENATORS TO CO-SPONSOR S. RES. 490 and ask your CONGRESSMAN/WOMAN TO JOIN THE CAUCUS! You don’t have to even mail a letter, just log on and click. Please.
I had the joy of walking around to do some sightseeing that morning with some new mito friends, including a Mito-affected young adult named Liz. Her gait was slower and her words were not as clear, but she trudged along with the rest of the group to ask people to help her and those who couldn’t come she made me smile. Anytime I thought I was hot or my feet hurt, I thought about Liz and Will.
I would walk a million miles if it meant a treatment or a cure. Please join me on a virtual walk to help people like Liz and Will to find a treatment or a cure. Log on and sign up today. I promise, you won’t get hot or sweaty or have hurting feet.

The buses pulling up at the Capitol. We experienced DC traffic as it took at least an hour to get there.

On the "house side" of the Capitol

I thought this statue was appropriate - what I view as mother of justice doing right for her children.

Monday, June 18, 2012

UMDF 2012 Conference

WHEW! We’re home from what felt like a very long trip to DC for the UMDF 2012 Conference. There is a lot of information I want to share – some just so that I can look back on my notes from time to time to remember what all I learned – so bear with me or skip the long boring parts of these posts. I'm going to save the photos for the long, technical posts to "liven" them up a bit.
The short post:
We left Wednesday morning for Washington DC / Bethesda is where the hotel was at. Went to a Day on the Hill training that evening and then pretty much lounged in the hotel room and went to bed.
Thursday: Day on the Hill. The buses left at 7:30 a.m. for Capitol Hill. I had an 11 a.m. meeting with a representative from Sheila Jackson Lee’s office (our local district person) then that afternoon everyone from Texas, about six of us met with representatives from Senator Cornyn and Senator Hutchinson’s offices. The meetings went well. That evening Neil and I took the subway to Georgetown and walked across the Key Bridge. We ate dinner at an Italian place and happened to see Juan Williams a FOX commentator and his wife come in to eat too.
Friday: Day 1 of the conference. Up for a 7:30 a.m. start. I attended meetings that related to What is Mito, Clinical Trials & EPI-743, Networking lunch with people from our region, GI/Motility issues, Immunology, Financial & Legal issues for special needs. We had a small break and then dinner and awards banquet. The keynote speaker was Dr. William Gahl, director of the National Institutes of Health Undiagnosed Disease Program. He shared some incredibly complex info, but all very interesting. They honored some really incredible people then announced who was receiving grants for research. By the time I finished visiting with new friends, it was close to 10 p.m.
Saturday: Day 2 of the conference. Up for an 8 a.m. start. I attended meetings that related to: Navigating the Medical World with in-patient and out-patient visits, Nutritional considerations, Living with Mito – tips, Ask the Mito Dr. Panel, Scientific/Clinical meetings Roundup. The last portion of the day was about testing and diagnosis and I had really had all I could handle. Neil and I ducked out and hung out in the lobby waiting for our friends to pick us up.
Saturday night: Andre, Bridgette and their 2 year old son Cooper picked us up and off we went to Annapolis, Maryland for some Maryland Blue crab cracking. We went to Cantler's and while we were waiting we tailgated in the parking lot. This place is like THE place to go. We had a great time catching up, cracking crab and watching their son Cooper hammer away at crab legs. We headed back to their house in Vienna, Virginia.
Sunday: We got up, had some breakfast and off we went to DC for "Andre's Driving Tour." We saw everything! Stopped and ate brunch at Old Ebbit’s Grill which was spitting distance to the White House.  Did some more driving tour items and then off to the airport. Got home around dinner time to a VERY happy Will. I don’t know who was happier to see each other. Ate dinner, bath and went to bed.
It was an amazing experience. I met so many new people, learned a lot and had fun. I don't know why, but I wasn't expecting it to be so emotionally draining. I knew it would be hard, but it kicked my bootie - mental, emotional, physical, social brain drain and brain dump.
Mark your calendars for June 14/15, 2013 for the UMDF Conference in Newport Beach, California!

Friday, June 8, 2012

A hard day

Yesterday really sucked.
I took Will to gymnastics and stayed to watch. While he was doing his handstand (with help) one of the big boys started yelling that, “Will can’t do that, he doesn’t know how” blah blah. I couldn’t tell which boy it was because it’s a rowdy class and they say their ABCs while they do handstands. I wanted to drop kick all of them. Will didn’t notice and he ran down the mat with a HUGE smile on his face, just so proud of himself.
I was proud of him too. Just made me realize how mean kids can be without even realizing they are being mean. I don’t think anything was intentional, just one of those fierce protective mom moments where you want to do everything you can to help and protect your kids. (Parents, please know I will never really drop kick your child.)
I went back home to finish getting ready for work and got an email from our fertility clinic.
(Because my eggs are highly unlikely to produce non-mutated eggs for another pregnancy, we’ve decided to move forward with an egg donor. Neil contributes his end, the donor does the egg and I carry our baby!)
So, during the past few months we’ve had a very private rollercoaster ride of selecting a donor, not getting the one we thought we wanted, so on and so forth. We recently finalized all the contracts and are moving forward.  We were SO close to having the embryo transfer and me being pregnant. It was so close we could feel it. I had somewhat secretly looked through the maternity clothes that my sisters and I have stored at my parent’s house, talked about baby names etc.
On Tuesday, our egg donor had a checkup visit with our fertility doctor. They found three cysts on her ovaries. We were told we have to stop this cycle, stop all meds and see if the cysts will explode during her next period, then restart everything all over again. Without going into too much detail on the ins and outs of this IVF process, the nut of it is that we were so close and now it feels, yet again, so far away.
There is no guarantee for the next cycle that she will be cyst-free. So, we wait. We take fertility meds. We try again.  We’ve invested a lot of time and money into this donor so we’re going to stick with it and as Dr. Mark said, give science and technology a chance to work.
After I read that email I had a really loud, angry, tearful fight with God. I am just so tired of having to activate and find a way to be okay with a Plan B, C, D and so on. Some days I feel like I have reached Plan Z. I’m tired of being sad and hurt. We just want a stinking kid. It’s amazing what we used to take for granted in life.
So, here we are another day another plan. I feel much better today. We have an amazing support system with our family and friends. Last night Neil suggested that I do a blog to just get this out of my system and I reacted with a NO. This is just too much. After a goodnights sleep, a dose of Lexapro and a lot of good hugs I am in a much better place and felt like a blog post was what I needed. This blog started as a way to update our friends and family on Will and has turned into a scrap book of sorts.
This is our life. It’s still really painful today. It feels like the rug was just yanked yesterday on something that shouldn’t have been a problem. It wasn’t the donors fault. I heard she feels terrible about it and was crying at the dr. office (we have an anonymous agreement) It just goes back to the crazy, screwed up stuff our bodies do.
I’m sure there are 100 million reasons why this is the way it should work out. Timing is everything and we really don’t know Gods plan till it happens. I’m going to have a long chat with him one day as to why, WHY? WHY? It’s all going to work out and hindsight is usually 20/20.
My birthday is coming up this month, 32 years old. In case you’re wondering the top of my wish list is a crystal ball that will show me why and how and when – for so many different things.

Monday, June 4, 2012

Crawfish and Cash

I hope I can do this family justice as I share this story.
Rewind with me to second grade when I met Monica (Ciatto) Montemayor, me, Lyla (Vinklarek) Wooten and Margaret Ochoa became fast friends and were quite the foursome till my family moved to The Woodlands when I started 6th grade.

Monica and Lyla helped me out on these above photos. Hilarious too look back at sleepovers, St. Rose uniforms, and Go Texan Day gear!  At least I hope that bottom picture was Go Texan Day gear and not our play clothes.
Now, fast forward more years than I care to count (like 20) and we have remained friends, some just on Facebook and others I see at least monthly for dinner and usually wine! A few months ago, a friend of Monica’s mom emailed me and asked if they could host a crawfish boil to raise money for Will. After I picked my jaw up off the floor a few minutes later, I managed to send a response.
Apparently, every year this family hosts a crawfish boil with their close friends and family in memory of a man named Kevin – their son, brother, uncle, cousin and friend – passed away 5 years ago. Their family explained that Kevin was very involved with helping others and as a tribute to his memory, they host an annual crawfish boil to raise money to benefit a child (of someone they know, or a close family friend) with serious illness or other complicated health issues. 
This year they chose Will. From my email exchanges with the family, I believe that it wasn’t just Will they chose, but really Mito and awareness of the disease as a whole which makes this gift more meaningful.
They had nearly 145 friends and family attend, and Kevin’s parents were even able to get a picture with all their grandchildren which apparently hasn't happened in years, “there is ALWAYS someone missing.”
ALL the Grandkids

From Karen’s email: “Every year at the crawfish boil, we have upheld this tradition and the first "official" game of the day would be Dads vs Kids...and the dad’s ALWAYS win.  Last year, the unthinkable happened – the KIDS WON!  Not to be outdone this year, as the dad’s prepared to play the first game, the theme song of Rocky started playing over the speakers and their granddaughters cheered them onto the field (including pompoms).  They came out in white, hooded, boxer-style robes and walkers!  Once they made it to the field, they ditched their robes and both were wearing super hero underwear. It was HILARIOUS!  ...and they beat us again (and it wasn't even close!).  I don't know how we are going to top that next year!
Volleyball dad and cheerleaders

Even with all the fun and memories, what really warms us every year is they number of people who are willing to give to causes and people that we feel need our help in one way or another.  People that they don't even know, and will probably never meet.  We even had a number of people who couldn't make it that insisted on giving their donation as if they had. 
Thank you for allowing us to help you guys.  This year, we were able to raise $2,410 for Will!  We know that Will's battle is only beginning, but we know he is surrounded by awesome family and friends to help him see brightness in a very dark world.  While it is by no means a cure, we hope that this small amount of money helps ease a small portion of your financial burden, and helps reassure that there are many people out there that care deeply about people they barely even know.  


God bless you and your family!”
From our family to yours, thank you so very much for this incredible gift. It’s been nearly a year since we found out Will’s diagnosis and I continue to be humbled by the generosity, honesty and pure goodness of our family, friends and strangers. I wish I had a magical special way to thank people like this. All I can say is thank you.
We plan to pay it forward with this gift and find meaningful ways to give Will access to more – whether it’s more health care, fun times or memories that he (and we) will never forget. For starters, I know it’s going to go towards paying for a pretty expensive medical device that neither insurance nor Medicaid  cover – a special vest that helps give Will more sensory input and will hopefully give him a better chance at not falling, wobbling or being so ataxic. He’s used this before and we believe it helped him start walking. Who knows, maybe this vest will help Will pick up a little speed and be a little more coordinated.
I don’t think 10 minutes go by without me worrying about Will falling and hurting himself or how are we going to pay for stuff. This gift eases the worry of both.