Thursday, September 29, 2011

Top Ten Things I Would Do If I Didn't Work

 If I didn't work (har har har)

1 - I would watch every single episode of Yo Gabba Gabba.  I would learn all of the songs and AWESOME dance moves.  Rock on DJ Lance.

2 - I would drink multiple cups of (half-caf) coffee each morning.

3 - I would visit the Children's Museum of Virginia and the Virginia Living Museum on a regular basis.

4 - I would look at my house and wish that someone would come by & clean it daily.

5 - I would nap with Klaw and Callie.

6 - I would be the Yelp! Duchess of three grocery stores, four gas stations, a pediatric practice, a pediatric specialist group, & Walmart.

7 - I would develop carpal tunnel from all of the time I spend gathering information farting around on my iPhone.

8 - I would wear my pajamas until noon every day unless brunch with friends social obligations forced me to leave the house.

9 - I would read a lot of crappy free, self-published iBooks on my iPhone.

10 - I would allow my husband to continue to erroneously cling to the hope that I will one day make money from this blog.

There you go.

Mama’s Losin’ It

Wednesday, September 28, 2011

Urban Hens & the Women Who Raise Them (Guest Post)

Many many months ago, I stumbled across a blog called The Little Hen House while I was trying to figure out how to make a blog button with a grab box. I didn't even leave a comment thanking her for it.

How rude of me!!!!

Anywhoo, I kept reading her blog off & on and becoming more & more jealous that she lives in San Diego, so I started interacting with her on Twitter and finally leaving some comments on her blog.  I'm glad I did.  Morgan is a delightful person with a wonderful sense of humor.  Her blog covers everything from fashion to family, from blog tips to humor, and, of course, her life within the hen house.

When I mentioned my interest in one day owning hens (& goats, but that's another story for another day), she was totally game for a litte Q&A about hen ownership in an urban/suburban setting.  Even if you have no desire to own hens yourself, I think you'll at least be entertained.  When you are done here, make sure you check out her blog!

Thank you, Morgan!!!

How long have you had hens & what made you decide, "OMG I want some hens in my backyard"?

We have had hens since February, and are coming up on our sixth month anniversary with them. I can't say that I had an "ah ha!" moment that moved us to become urban chicken farmers. My family and I live in the barrio, and many of our neighbors have chickens. We joked about getting chickens when we bought our house five years ago (to better acclimate to the neighborhood), and over time the idea of raising backyard chickens sounded better and better.

How much space is required per hen? How much can you get away with at an absolute minimum? Describe your first chicken coop.

It really depends on the breed of chicken. There are breeds that are better for meat, some are well-known for their egg laying, and others are just for show.

As far as space goes, good rule of thumb is this: The interior of the coop should have 2 square feet of floor space per bird, the exterior of the coop (the run) should have, at bare minimum, four square feet of space per bird. That is still quite restrictive though. Something like 10 square feet per bird would provide your hens with a very comfortable living environment. If you decide to let your hens roam the yard, make sure your fence is at least six feet high, or clip their wings. You also want to make sure that they can't climb under the fence, between the pickets, and that they are safe from ariel predators like hawks.

Our chicken coop (the only one we have ever owned) was purchased on Craigslist for $200. Is there anything you can't find on Craigslist? I mean, really. If you don't go the Craigslist route, you can purchase coop building kits online for really cheap, or even find some for free. Depending on how many hens you have, you can use a guinea pig cage as a coop or even convert and old dog house into a coop. There are also pre-fab wooden coop kits sold online, Eglu makes a hard-shelled coop, or you can easily build a simple coop out of scrap wood.

Describe the perfect hen personality for an urban/suburban setting.

Ok, this made me crack up because it's hard to believe, but chickens really do have different personalities. The chickens we have right now are very docile and not too adventurous. They are destructive by nature, and if you wind up with a crafty one on your hands she can cause a slew of problems. Which brings me to the next question....

Describe the worst hen personality for an urban/suburban setting.

Some of Dagny's handiwork
We just had to get rid of one of our hens, Dagny. She was bossy, pecked the other hens on the neck, and was very naughty. Dagny nearly drew blood on one of the hen's necks and she was always breaking out of the yard or getting in my vegetable garden. Once we even found her roaming in an alley down the street from my house! The day after Dagny went to live at my friend's house, I got a text from her saying she and her husband came home to find Dagny sitting in their living room watching TV with the dog.

Speaking of the devil, Dagny. Do you miss her? Do the other hens miss her? Do they even remember her? Their brains aren't all that big.

I have to say that I don't miss Dagny one bit. Ok, maybe that's not entirely true: I miss her eggs. That's it. My husband was sad to see Dagny go, but he's not the one who had to deal with her bad attitude. While I can't speak for the other hens, I'm pretty sure they were happy to see Dagny go too. Things are quite peaceful around The Little Hen House these days.

Have you ever thought about bringing a rooster into the hen house (other than your husband)?

Ummmm. Hell to the no. Our next door neighbor had a rooster when we first moved in and I wanted to DIE. Actually, I wanted the rooster to die. It crowed non-stop. All day and all night. Whomever made up the old adage about the rooster crowing at sunrise was a liar. Don't tell anyone, but we finally had to call the city and have it removed from our neighbor's property. Hens are legal in our city under certain conditions, but roosters are entirely illegal. Considering our chicken coop breaks the city's code, it was pretty hypocritical of us to rat out our neighbor, but my sanity depended on it.

How much time per day do you have to allocate towards taking care of the hens? What is the most difficult aspect of their care? Other than the eggs, what are the benefits to owning hens?

I don't check on the hens every day. I probably spend about an hour a week cleaning up after them, refilling their food and water, and collecting the eggs. Once a month I do a big clean out of the coop, and that takes about an hour to an hour and a half. I think a dog is a lot more work than a chicken!

The most difficult aspect of their care is keeping them contained and dealing with their destructive habits. They love to dig up plants and make a mess. I have pretty much let go of the idea that my chickens are going to live in some manicured little grassy area. It's a pig sty.

Not only do chickens provide fresh, high-quality eggs, but they also serve as an in-house fertilizing and bug removal system. My plants, when they aren't being dug up, are lush and healthy. I haven't seen a slug in months, and the brown widow spiders that used to plague my yard are nonexistent. I love it!

A family I nannied for had hens and one night raccoons got all but one hen (she was really smart for a hen). It was very sad for everyone, myself included. Are there any other predators you have to prepare for in an urban/suburban setting? What about, say, really big dogs or sneaky cats? Toddlers?

How terrible for that family! Whatever environment you raise chickens in, predators are a constant threat. My neighborhood has a feral cat epidemic, and I was really worried about the cats hunting down the chickens. I think the fact that I have enough hens for them to form a flock, has kept the cats at bay. I'm pretty sure they would kick any cat's ass that tried to attack one of the brood. There are also stray dogs in the area, but my fence keeps them out. I also worry about skunks attacking the coop at night, but so far we haven't had any problems. Luckily, my toddlers have a healthy dose of fear of the hens. They have a tendency to peck at my girls, which doesn't hurt, but it sure does startle the bejeesus out of them!

Do you think a few hens could take out a maltese dog that is never on leash & always poops in our yard? Hypothetically speaking, of course.

If we are speaking hypothetically, then I might suggest that a rooster would probably take care of their little Maltese problem. Not that I would know about these things, especially anything about the aggressive and territorial nature of roosters. Ahem.

What is the number one piece of advice you would give to someone like myself who might be considering owning a couple of hens?

I would say this: Do your homework. I highly recommend checking out:

and/or reading "Raising Backyard Chickens for Dummies." Then, just go for it! Life is short and it should be full of adventure. Here is how I look at it: Raising chickens isn't boring. Plus, if all else fails, it makes for great blog fodder. :)

 Have you every wanted to own hens (or goats, because I love them)?  Do you raise any now?  Why or why not?

Tuesday, September 27, 2011


Today, I am 35 years old.  I have no problem admitting my age and I've never really understood the dread some people face with each birthday.  I guess the whole "I'm one day closer to the long sleep" is kind of depressing in one sense, but I don't know. I don't think of  it like that.

This is what I looked like 35 years ago.
 Don't worry, I'm not all "Grow old gracefully? Why, I'm fighting it every step of the way," either.  It's just another day with the added bonus that  
See? All about me.

Anyways, you may have noticed some changes to the blog.  For my birthday, I have revamped my blog design.  It's an ongoing process, so there may will be some more subtle changes along the way but I wanted to get something up over the weekend.  I'm still learning and I'm not exactly the most visually creative person in the world.  This is a touch out of my comfort zone, but I'm fairly pleased so far.

Dad, Grandpa, Leslie & 2 yr old DANA!

I'd like to thank Kate from Mommy Monologues (& 2711 Designs) for helping me find the tree image in iStock and helping me develop a direction for the update.  (She's on a break from blogging & blog design right now)  I also want to point out that the branded social media links for Facebook, Twitter, etc in the sidebar on the right are free images courtesy of Icon Dock. Eli Rose Social has a great tutorial for adding social media icons to your blog, plus links to other free images.

This is my 3rd or 4th birthday. The frog is "Fleegle."

Later this evening, my sister is babysitting Klaw so that Chris & I can go out to eat at some fancy pants restaurant and just worry about feeding ourselves.  We don't get out much with out HULKSMASH Klaw, so this will be a nice treat.

Oh, my 2nd birthday cake is my earliest memory.  Those Disney characters had different shapes under their feet and I remember licking the icing out of them.  That's it.

25th Birthday in Charleston

30th birthday in Monterey

What's your favorite birthday memory?  I have plenty of terribly embarrassing birthday memories, but I'd like to focus on the positive today since this is some sort of milestone.

Monday, September 26, 2011

The Dream That Made Me Question My Medication...

The other night, I had a ridiculous dream.  I imagine it was similar to what one might experience during a bad LSD trip.  The best part is that when I woke up, I immediately thought to myself, "I need Jillsmo to illustrate this dream for my blog."

I'm not kidding.  I woke up from a disturbing dream and thought about another blogger.

Anyways, the focus of my dream was a huge see-saw contraption positioned on the middle of a king-size bed with EIGHT bears on it.  Yes, eight bears.  On a super see-saw.  On a bed.

I knew those bears were some of Jillsmo's now-famous The Popsicle Bear Thing©.  The only thing left was for me to convince Jill of this fact and bring my dream to life on my blog.

We had some tweeting & emailing to do before we could accomplish this task in order to clarify the vision.

I put too much pressure on Jill.  She doubted her ability.

Rough Draft #2

Rough Draft #1

I begged. Jill relented. I rejoiced.

Thank you, Jillsmo.

eight bears on a seesaw, as dreamed by Dana K

PS - tomorrow is my birthday...

Friday, September 23, 2011

Mitochondrial Disease Awareness Week

As Mitochondrial Disease Awareness Week comes to a close, I am finding myself truly in awe of the moms & dads I have gotten to know through Klaw's VLCADD diagnosis.

Klaw has one of the more common fatty-acid oxidation disorders, VLCADD...not that "common" among rare disorders really means a whole lot.  He has, for the most part, been textbook VLCAD deficiency, as far as his blood work goes.  His newborn screening levels were so out of whack, there wasn't really a question about it being a false positive, which can occur.  His follow-up blood work showed clear signs of VLCADD.  His DNA mutation analysis merely confirmed what his specialists were 99.99% sure Klaw had.

So far, outside of the initial newborn screening, VLCADD hasn't thrown us any surprises.  For that, I am grateful.

Well, there has been one surprise.

I have been surprised by the community of families living with the various mitochondrial disorders.  I avoided looking into support groups until Klaw had his first hospitalization.  I was still living the fantasy that Klaw would be asymptomatic and I wouldn't have to worry about all of the extra issues that come with VLCAD deficiency.

I avoided it out of fear.  I was scared to hear what other families have gone through.  I was scared to face the potential for worst-case scenarios.  I was scared to face every aspect of Klaw's disorder.

I'm sure some of y'all that have known me for years find it difficult to think of me avoiding something out of fear (except for spiders); I promise it happened.

However, I'm glad I finally pushed through and I'm sad that it took a hospitalization to make me accept that I might need a bigger support group than just myself.  The mitochondrial disorder & fatty-acid oxidation disorder support groups have been a resource of information, of new studies & treatments, and sometimes just "yeah, been aren't alone" emails.  If there's anyone living with mitochondrial disease, my single biggest piece of advice is to reach out to the support that is out here on the internet.

You aren't alone.

Yes, there are many many faces of mitochondrial disease and many different ways it will affect our lives.  Our experiences are all unique but we can help each other push through the hard times and celebrate the blessings.

This is our face of MITO

I want to thank all of you reading this blog and these Mitochondrial Disorder Awareness Week posts.  Each one of you is another person who is now aware of these rare diseases and can share this information with others.  Early diagnosis, which brings early management, is the best defense we have against mitochondrial disorders right now.

Please keep sharing the information.
You never know who is reading (or listening)...

Mitochondrial Disease Awareness Week 2011 Guest Posts
The Day My World Stood Still - A father's perspective
LCHAD - A mom's difficulty in getting a diagnosis without the newborn screening
Wish GRANTed - A sister's determination to help her brother
A Great Day - A girl's day to day life with Mitochondrial Disease
He Looks Great! - My post about the dangers when doctors are unfamiliar with Mitochondrial Disease

Let's BEE Friends

Thursday, September 22, 2011

Mitochondrial Disease Awareness Week: A Great Day

 Today's post for Mitochondrial Disease Awareness Week comes from Terra, a Mito Mom I met through Twitter.  Terra blogs at, mostly about the medical adventures of Kendall, but also about life with the other three sisters, and the crazy things that happen in a house of 5 girls, and one daddy who travels all week. It's rarely a dull moment! You can read more about Kendall's story here, or contact Terra via email at
Please take a minute to read my guest post on Terra's blog "He looks great!"

This is a what it takes for Kendall to have a "great day."


Have a Great Day!           

How many times have you told someone "have a great day!" or heard from someone "oh - i'm having a GREAT Day!!"? It seems like some things should just be so easy, right? CHOOSE to have a great day, and you will have one! But for so many kids and families affected by mitochondrial disease, having a great day isn't as easy as it seems.

Our daughter Kendall was diagnosed with mitochondrial disease around the time of her first birthday. She had struggled from the first breath of her life with all of the various ways that mito affects her body, and spent almost 2 weeks in the NICU learning how to breathe and eat on her own. She will be 3 in November, and life has definitely been a roller coaster of symptoms, emotions, and good/bad days in those 3 years.

As Dana's post on my blog addresses - "oh they look so great" can be hugely misleading! For many of the children (and adults) affected by mito, looking great and having a good day usually require an inordinate amount of work. I'm going to attempt to walk you through what it takes for Kendall to have "a great day".

First - eliminate any day where the temp is over 80 degrees or under 40 degrees. In the midwest where we live, this leaves about 3 months of the year for "great days". Her autonomic nervous system is quite affected by her mito, and leaves her unable to regulate her temperature, heartrate, respiratory rate, and gastric motility. And it's not just that she doesn't sweat in the heat - it's that her body is literally unable to recognize that it is hot, and it starts literally cooking from the inside out. Within ten minutes of being outside on a hot and humid day, Kendall begins to need interventions to bring her temperature down, calm her heart and breathing, and resetting herself to baseline.

Second - Make sure we have nursing available on any of those days that the temperature is good. Kendall's needs require that we have full time skilled nursing care administered by RN's who come into our house and help do all the "stuff" that it takes to get Kendall out of bed in the morning, function through the day, and get her ready for bed at nite. Having nite time nursing on many nites would also be super awesome, but we just don't get that many hours covered by our state waiver program! without nursing coverage, Kendall often must wait in her bed until I have gotten her big sisters up and dressed for the day, lunches made, breakfast made and eaten, spelling words checked, etc. ad nauseum and on the bus before I can attend to unhooking her, changing her, bathing her, and getting her out of bed.

Third - as referenced above, Kendall requires some pretty hefty interventions in order to even get out of bed every day. She is currently "TPN Dependent", meaning that IV nutrition consisting of a precise mix of protein, carbs, and fats - along with essential micro-nutrients and vitamins - is delivered directly into her veins for 16 hours a day via a "central line", or permanent IV, implanted into a hole in her chest wall, running directly to the major vein in her heart. I know those sound like just some crazy words on a screen, but the reality of having a toddler have a permanent IV coming out of their chest that must be covered, protected, and kept sterile at all times is far beyond what I can ever describe in words! YIKES is about all I can say!

On top of the IV Nutrition, Kendall is also hooked up at nite to a feeding pump delivering special formula directly into her intestines via a "G-J tube" - gastric-jejunal tube. Meaning, a plastic button comes out of a hole in her upper tummy area, and has a long plastic tube threading down through her stomach and into the upper portion of her small intestine, the jejunum. (didn't think you were going to learn so many vocabulary words today, did ya?) Kendall is also hooked up to "continuous drainage" at nite from the "G" portion of that tube in her stomach, because her intestines don't always want to move the food through her GI tract (hence why she is on the IV nutrition, her gut is not working real well at the time being!) - and sometimes that food travels backwards, back up into her stomach. Due to her low muscle tone (hypotonia), kendalls stomach is not real great at keeping the food in there, and so it often tries to travel back up into her esophagus, where it is very likely to either block her airway, or travel down into her lungs as she breathes. She has undergone a procedure called a "Nissen Fundoplication" to wrap her stomach around her esophagus to lessen the risk of this happening, but on nites where her gut function is SUPER bad, it happens quite often. So we hook another tube up to her stomach that has a drainage bag attached to it with the hopes that any food her stomach is trying to get rid of (puke up) goes out into that bag, and stays out of her lungs and airway. But every so often it DOES go into her airway and causes her heart to either start beating real fast to get oxygen everywhere it needs to go, or she just stops breathing altogether (known as an "apnea"). We are alerted to these events because Kendall is also hooked up to a "pulse-ox" machine, measuring the amount of oxygen that her blood is carrying to keep everything functioning as well as it should. And on the nites when it ISN'T carrying enough oxygen or her heart is having to work too hard to get oxygen delivered, she is also hooked up to oxygen by wearing a "nasal cannula".

On top of hooking up and monitoring all of that, her nurses also help change the ridiculous amount of diapers that one would expect from a child getting 5.5 oz of fluid every hour through the nite. Kendall sleeps in a special medical bed which allows us to raise or lower her bed in order to attend to all of her cares needed throughout the nite, as well as to raise the head of her bed so hopefully gravity keeps food out of her lungs and into her intestines.  No cutesy sheets or comforters for her - we need practicality all the way! Hospital blankets and chux pads are her bedding - cause it gets changed at least 3 times a day!

So after all of THAT - Kendall gets UNhooked in the morning, and still has to wear a little mini backpack that holds her IV food and an IV pump that is connected to her central line for roughly another 2-3 hours. It usually comes off just in time for naptime, where she sleeps another 3-4 hours in order to be awake for her sisters coming home from school so that THEN, she has about 4 hours in which to have "a great day". She gets to run around mostly tube free (somedays she has to have the long drainage bag still attached to her stomach in order to alleviate the intense pressure and tummy pain caused by a non-functioning  gut), and just try to be a regular kid, playing with her sisters.

Fourth - in order to be able to "play", Kendall has had to have basic developmental skills taught to her by a team of therapists who comes to our house five days a week to work on various aspects of development. When she was a baby we had to start painstakingly slow, teaching her that she had arms, these are your arms, they are attached to your shoulders, you can move your shoulders to move your arms. We taped her up with lots of pressure so she would stop hyperextending every joint in her body and would hopefully hopefully hopefully realize that SHE COULD move her own arms and legs. And then we had to teach her how to roll over, move by move by move. And she FINALLY learned how to prop herself up to sit the day before her first birthday. Everything Kendall can do now, she can do because of our amazing therapists. She did not get to just wake up one day and decide to play catch with her sister - she had to EARN that skill, work for it, tough through the pain and frustration of using muscles that just don't want to do their job sometimes, and finally GET IT. Therapy has been an intense and huge part of our entire family's experience as we have had to rearrange schedules, miss out on playdates for the bigger girls, and in general be tethered to the house so that Kendall could get the therapy she so desperately needed in order to function "normally", and have a great day playing!

Fifth -  make sure you have all your medicines in order, drawn up, scheduled, and delivered. Kendall is on 10 different meds a day just to ensure that she can breathe, poop, digest food (mostly formula), make new blood cells, break down the buildup of metabolic by-products that get backlogged in a system that cannot properly metabolize food and oxygen into energy, and not get life-threatening infections. Phew. Chump change, right? And this is the bare minimum. As her parents we have purposely made decisions to NOT start many meds that may or may not be of help to her because at some point, the med schedule would take over her life, and we aren't given any guarantees that some of them would even be helpful. We have instead chosen to take her to a chiropractor to hopefully help aid in some of the things that "more meds" would supposedly be doing, with far less side effects. So oh yeah, add in trips to the chiro across town to the med list!

So after ALL OF THAT -  if the stars and planets are aligned, and she isn't gearing up into an infection, or a gut shutdown cycle, or just recovering from an infection, AND she hasn't left the house in a few days or been tapped out energy wise by any other number of factors - THEN you just might get a glimpse of our beautiful girl having a GREAT DAY.

And oh how we hope for those great days. we welcome them and we cherish them and we try to hold on to each one for as long as we can because GREAT DAYS are very often few and far between, and we rarely get more than a handful strung together. Our definition of "GREAT DAY" has had to be adjusted a bit as time has gone on. For now, we will take any day that we are together as a family, at home, not in a hospital room discussing blood cultures and transfers to a PICU. We will take any day that she is able to flash that gorgeous smile at us and throw her head back in glorious laughter. We will take any day that she is able to tolerate a walk to the park in her wheelchair, so she can get out and painstakingly climb the stairs, and feel the wind in her face as she slides down that slide or swings in the baby swings. When you can learn to cherish the awesome simply joys in life, then you truly learn what a GREAT DAY really is.

For us, we know.

It's any day that you're alive.

Wednesday, September 21, 2011

Mitochondrial Disease Awareness Week: Wish GRANTed

 Delaney is the author of today's post.  Her brother, Grant, was diagnosed with Mitochondrial Disease as an infant.  Watching him grow up with this disease and face these challenges led her to starting a Facebook fan page, Wish GRANTed, to help bring awareness to mitochondrial disorders.

This is the story of how a young girl's determination & love for her brother can bring inspire others to stand up and work towards a cure for mitochondrial disease.


My name is Delaney, and I'm 14 years old. My brother, Grant, who is a twin, has Mitochondrial Disease.  For 2 years, I've watched my brother get sick, and I couldn't do anything to help him. I couldn't really talk to my friends about it because none of them have ever heard about Mito, and I hated going through the explanation every time. Even in school, we spent a week talking about what Mitochondria do, but the teacher had never heard of Mitochondrial Disease.

I felt the need to do something to help and decided to start a Facebook page to explain Mito in a way kids like me could understand it…  something I could tell the people I know to read so I didn't have to keep explaining it…. and a way to spread awareness about Mito, in hopes that more people knowing about it will help a cure come sooner.

I started by posting the link and asking other people to do the same. In one week, I had over 6000 people like the page. That means 6000 people might have learned something about Mito.  This is much more than I ever expected.  We are now doing fundraisers and Grant has a research fund set up through the UMDF.  I never wanted to be the focus of this page, and I am glad to say that I don’t think I am.  The page is spreading because raising a cure for Mitochondrial Disease is worth it.   

A local news affiliate covered Delaney's creation of Wish GRANTed.

Tuesday, September 20, 2011

Mitochondrial Disease Awareness Week: LCHAD

Today's guest post is from a friend I have yet to meet in person, Candise. We were introduced on Facebook via a mutual friend, Darby who has guest-posted here before about her son with Cystic Fibrosis and other specialties. Yes, we rare disease moms find each other and stick together like glue.

Two of Candise's daughters have LCHAD - Long-chain 3-hydroxyacyl-CoA dehydrogenase.  LCHAD and VLCADD share some of the same dietary issues, as their list of "bad" fats overlap.  Her eldest daughter was born before the fatty acid oxidation disorders were added to many of the expanded newborn screening programs.  You can read more about them at Life...the good, the bad, and the ugly.

This is the story of Candise's family and the difficulty in diagnosing mitochondrial disorders without the newborn screening.


Mitochondrial disease/disorders unfortunately do not show up as bright purple spots that scream "Mitochondrial Disease". Most patients with Mito appear normal. This is one of the reasons it is commonly misdiagnosed. My youngest child, Lauren, had the newborn screening that picked up her disorder. She was born with a genetic disorder called LCHAD. She is among the lucky ones who have been diagnosed through newborn screening.

I use the phrase "lucky" loosely.

LCHAD is a metabolic disorder that is in the family of mitochondrial disorders. The defect is in the mitochondria of each and every cell in her body. She will never out grow this and there is no cure for it. Mitochondrial diseases/disorders affect multiple organs in the body and can cause GI issues, developmental delays, Autism, neurological problems, muscle weakness, chronic fatigue, vision/and or hearing problems, failure to thrive, Diabetes, bladder, bowel issues, and more.

Lauren has a laundry list of symptoms and problems due to her LCHAD but without newborn screening most children pass away before the parent(s) even know what is wrong. She has had multiple surgeries, therapies, and hospitalizations.

My oldest daughter, Kadian, is 8 years old. When she was almost 5, she was sent to an Urologist because she would not potty train. After many surgeries, blood work, biopsies, multiple failed trials on medicine,a Cecostomy tube, muscle fatigue, chronic fatigue, and a progression of getting worse she is also believed to have a mitochondrial disorder.

We are waiting for our insurance to approve her muscle biopsy in hopes that it will give us some answers.

1 in 4,000 kids will develop mitochondrial disease by the age of 10, so this doesn't only happen to babies. There are many adults who have been sick most of their life but no one knows what exactly it is till they have a child that has it.

Unless you know someone affected by it, most people have never heard of it....most doctors have never heard of it...or they believe the patient has to be in a wheelchair on a tracheotomy to have it.

Our hope is that everyday people and doctors will learn more about mitochondrial diseases/disorders so that a cure can be found.

Monday, September 19, 2011

Mitochondrial Disease Awareness Week: The Day My World Stood Still

Thank you for stopping by our blog during Mitochondrial Disease Awareness Week!  Every day this week will feature a post covering different aspects of life with mitochondrial disease.  I hope the posts are both informative and heartwarming.  Living with any rare disease is a challenge and the more information we can share will be helpful to others who are affected.  I hope you will share this information and spread the word about the blog posts.

At this time, there is no cure; we can only treat & manage the symptoms.  Many of the mitochondrial disorders are progressive and since developing additional testing through the expanded newborn screening (heel prick), these disorders are being caught early and often saving & prolonging the lives of the affected infants.

Today's post is from Chris as he details Klaw's birth and diagnosis from his perspective.


To celebrate Global Mitochondrial Awareness Week, I feel it appropriate to provide the whirlwind of emotions that I was dealing with when I found out Klaw was diagnosed with VLCAD. I have yet to mention it in any of my post thus far.

Anyone with a family who has to travel away from them for an extended period of time knows that it is not easy. That is, unless you don't really like your family and enjoy being away from them. That is not the case for me.

So let me tell you about what my life was like leading up to Klaw's birth and up to my finding out about his disorder.

Dana's due date was March 19th. I had been away from home since January 12th and finally pulled back into port on March 14th for two weeks. Well, March 19th came and went and no baby. I was afraid that I was going to head back out to sea before the baby came. Fortunately for me, Klaw arrived March 28th, the day before I went back out to sea for a few weeks and everything was awesome for those 24 hours.

Klaw just minutes after being born.
 The next few weeks brought excitement and anticipation knowing that I'd get to see my little boy again soon. During that at-sea period, my submarine pulled into another port and I was able to talk to Dana. My boat, as we submariners call it, was scheduled to change homeport to Connecticut a few months later, with Dana and Klaw planning on staying in Virginia for the year that I would be up there. During my phone call, Dana said, and I quote, "I know a way that you can get back down to Virginia sooner." I was thinking great! Of course, I knew there had to be a reason and a good one at that.

That's when everything changed for me. Shortly after I got home, Dana told me that the Virginia Newborn Screening Program had found that Klaw was born with a rare genetic metabolic disorder. I was speechless and didn't really know what to say. I let her explain the details of what she knew. I immediately took action to try to ensure that I got back to Virginia as soon as I could after the boat moved to Groton. Now I did get back, just not as soon as I would have liked.

This was the day Dana told me about Klaw's VLCADD

I'm not normally one for doing research unless it is required. Dana, always wanting to be well-informed (that's a trait of hers I wish I had) had found out a lot about VLCAD, as the disorder was called, through research. Honestly, all I wanted to know was whether or not my son was going to be able to live a normal life, i.e. play sports.

Dana continued to learn more about Klaw's disorder and she continued to teach me. In fact, most of what I know about it is through Dana. I know she hates that she is my only source of knowledge about VLCAD, but again, I despise research.

Well, to wrap this up, I will say that I was saddened about what she told me that April day. I questioned whether or not it was my fault and realized that if it were, I'm not perfect. That last part was a joke by the way.

What I did realize is that no matter how serious Klaw's condition was or was going to be, I love him.

He is perfect to me.

Monday, September 12, 2011

Roadside Emergency Kits

In my almost 20 years of driving, I have learned the importance of having a Roadside Emergency Kit available at all times.  Some of the contents have come about due to finding myself in a situation and lacking a necessary item (inflate-a-flat, anyone?).  Some of them are, of course, the basics that everyone should have at all times (like jumper cables!).

However, my Roadside Emergency Kit has evolved devolved into something quite alarming over the past few years.  I'm sure a behavior analyst would have plenty to say about it.  To be quite honest, I was rather taken aback when I realized what I had collected.

Perhaps Chris &/or any of my passengers should be a little wary.

You never know what you're in for when you get in the car with me.

Yes, you are reading that correctly.  My Roadside Emergency Kit contains Bubba teeth, athletic tape, a knife, and an ice scraper.  All I need are some adult diapers and I'm ready for a trip to Cape Canaveral.

Saturday, September 10, 2011

Mitochondrial Disease Awareness Week

Mitochondrial Disease Awareness Week is just around the corner & I am in the process of lining up several guest bloggers to share their experiences living with MITO. I hope that it will be an informative and thought provoking week. I still have spots available for the week and, if possible, I'd like to feature MITO bloggers during the following weeks. If you are interested in submitting a post, please contact me at ReallyWhatWereWeThinking (at) gmail (dot) com.

I'd also love to hear from all of you what you'd like to know about Mitochondrial Disease. I've discussed & described Klaw's life with VLCADD in several posts, but the fatty-acid oxidation disorders are just one branch in the family of mitochondrial disorders. Please leave your questions in the comments or email them to me at ReallyWhatWereWeThinking (at) gmail (dot) com. There is no question too small, long, or personal.

So, folks, what would you like us to cover in the coming weeks about mitochondrial disorders? Has your life been touched by mitochondrial disease in some way?

Friday, September 9, 2011


So, Jillsmo over at Yeah. Good Times. awarded me a prize.

She is an artiste with limited capabilities but her art speaks to the masses in a way that just cannot be described in words longer than four letters.

To sum it up, I answered a bunch of questions about Nutjobs vs Satire and got all but one right.  Technically, since Jillsmo is a nutjob, I think I got them all right, but I digress.

She still gave me an award.

That's all that matters.

Oh, this is the award:

I did edit it a little to cover up one little word that I would prefer my Nana not have to read on my blog with Jillsmo's permission.  Not that I needed permission, because, let's face it, Jillsmo, much like the honey badger, don't care.

So, thank you, Jillsmo, for giving me a blog post this week.

I'm phoning it in for you.
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