For the Love of Kathryn (TTTS)

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Today, a dear friend of mine, Alexa, is sharing the story of her experience with Twin-to-Twin Transfusion Syndrome (TTTS).

 Alexa and I met while we were both living in Charleston, SC and became fast friends sharing a love of laughter, good food, and, well, shenanigans. We met through a mutual friend, eventually lived in the same apartment complex, and she helped me get a job with her at a tiny little French restaurant. Later, I moved on to outdoor education and running a canoeing program while Alexa learned about four different languages in her spare time (I may be exaggerating, but not by much) and joining the military. Years passed and we have reconnected on another level as mothers.  Alexa's experience with TTTS was the first time I had ever heard of the syndrome and I find her story informative and her strength inspiring.

For the Love of Kathryn

Did you know that TTTS kills more babies than SIDS?  TWICE as many babies!  Was your first question after you read that “What the heck is TTTS???”  A year ago, that would have been my reaction.  Yet I bet everyone is familiar with SIDS.  Well, I am altogether too down and personal with TTTS because it killed my daughter.  

TTTS is Twin-to-Twin-Transfusion Syndrome.  If you EVER know of anyone pregnant with identical twins, you need to tell them to stop, do not pass go, and head directly to the TTTS Foundation webpage.  (Contact information at the end of this post.)   And don’t allow them to be like I was.  My thought was “What can some woman in Wisconsin do to help my situation??”  So I never made that call to Mary at the TTTS Foundation.  And that will haunt me forever. Turns out, she has saved a LOT of babies. 

I was stupid.  Ignorance is not always bliss.  In my case, ignorance is a lifetime of pain and loss.  Earlier intervention, more ultrasounds, knowing the signs and symptoms, knowing the treatment options (since even many OBs do not!) can help change the outcome for babies.

Our story is written.  But I can try to help change someone else’s story.  That is why I am dedicated to raising awareness.   So to do just that, I’d like to share some of our personal journey.

September 28, 2011.  It was approximately 1:30 p.m.  My husband and I watched the ultrasound screen in amazement.  Identical twin girls!  Even though we found out very early, at just six and a half weeks, that we were pregnant with twins, we still were reeling from the idea!

This being our third pregnancy, we were experienced with the 20 week ultrasound, but I wanted my husband to be there anyway.  I knew he’d regret it if he never got to see how the awesomeness of the two babies interacting in the womb.

Thank the Lord he was by my side that day.  

The ultrasound tech seemed different to me that day.  There was something about the way she was telling me the information.  She was very matter of fact, and seemed to be in a hurry.  I commented on how big these girls were going to be when she told us Baby A already weighed 15.8 oz at 20 weeks and 3 days.  And how odd that Baby B only weighed an estimated 8 oz…

Then, the words that forever changed my world.  “See this black area in Baby A’s belly?  This is fluid.”  As soon as the words came from her mouth, tears started streaming down my face.  My husband looked at me and laughed.  “Don’t start imagining scenarios!”

“This is bad hon,” I told him.

And it didn’t take much longer before he understood the degree.

The ultrasound technician hurried through the rest of her exam and told us that we had TTTS and the Doctor would tell us more about it.  As we sat with the doctor, she told us the basics – when twins share a placenta (called monochorionic-diamniotic or mono/di twins – one placenta, two sacs) there is a high risk that they will not share fluids from the placenta equally.  One twin winds up “donating” fluids and the other receives too much.  This is why there was such a size difference in the babies.  The “black” area in the belly indicated hydrops fetalis – or a build-up of fluid in the baby’s abdomen, indicating heart failure.  

Not all babies with TTTS develop hydrops… the craziest thing about TTTS is how varied the outcomes can be.  Single loss, double loss, double survivors, some with severe disabilities and those that have no disabilities at all.  And then, because many of them are born so premature, they are faced with all of the challenges of severe prematurity.  There is no certainty about anything with this disease of the placenta.  But one thing is certain – you can’t fight something you know nothing about!  So learn, be aware, and share that awareness!  You never know when someone in your life may be impacted by this!

The card below gives some very key points and information.  

The details of the next few minutes, hours, days, weeks would fill a novel for me to write.  If you are interested in knowing what transpired in the months to follow, please come visit my blog “No Holding Back”.  Luckily our story doesn’t end completely dismally.  Our donor baby, Tiny as I refer to her, although only 1lb10oz at birth, has overcome all odds and is a perfectly healthy and very happy baby!

Thanks to Dana for allowing me to use her Blog as another opportunity to spread awareness!

Great Strides For Cystic Fibrosis 2012

Tweet My friend, Darby, has posted before on Really, What Were We Thinking about her son, Brady.  As we approach the 2012 Great Strides Walk for Cystic Fibrosis, I wanted Darby to have the opportunity to update all of us on how Brady is doing and, hopefully, help raise awareness and money again for this important cause.  To learn more about Brady and his family, check out Darby's blog, Keep on going...no matter what!

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Cystic Fibrosis...it's a progressive disease with no cure and an average life expectancy of 37 years old...CF is a genetic disease that causes mucus to build up in the lungs and digestive system resulting in chronic lung infections.  98% of all CF patients are pancreatic insufficient meaning they are unable to digest the fat in their food.  CF affects the respiratory system as well as the digestive system...it's a life threatening disease that affects more than 30,000 people in the United States.

Jeff, Brady, & Darby at the Great Strides Walk 2011

Our 3.5 year old son, Brady, has Cystic Fibrosis.  His days are filled with breathing treatments, chest physiotherapy, medicines, and g-tube feedings.  He spends each day fighting to stay healthy, and he spends a lot of time in the hospital each year, with his first hospitalization at only 5 months old. 

Brady will fight this disease for his entire life.  As a lot of people take for granted the ability to breathe, that's something he will always struggle with and be grateful for...he is blessed with each breath he has.

We are walking in the 2012 Great Strides Walk in May this year, and we ask everyone to either join our team in Virginia or to find a walk in your area and walk for Brady and the other 30,000 people fighting this disease.

Please donate to this cause so our child, and many other children, may have a chance at a longer life...come out and walk at a Great Strides walk near you...don't take for granted the breath you have.

Click here to make a donation to Great Strides

Successful Backyard Gardening Tips (Guest Post)

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Jessica from My Time As Mom has graciously agreed to share some tips on starting a garden.  Jessica is witty & has a firm grasp of sarcasm, so it's easy to understand why I was immediately drawn to her particular brand of snark.  She is one of the founders of #VlogTalk & has a new joint venture called One Martini at a Time.  Her love of all things Apple can not be exaggerated and if you ever need her, you can almost definitely find Jessica on Twitter.

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When I (had someone else) plant my first garden in April of 2011 I didn’t have high hopes. I figured everything would sprout and die (and I was optimistic on the sprouting part).

Much to my surprise, that didn’t happen. Instead my garden flourished and I was blessed with a ton of produce.

After my one successful year of gardening I now feel I’m an expert so I’ve written a few tips for you on how to have a successful garden.

Good luck!

1)       Figure out what you want to plant and where you to plant it while the weather is still cold. I suggest getting a book for your location that tells what fruits/vegetables can grow in your area. 

2)       As soon as you can after the last frost, get out there and start planting. (This part is best if you have others do it for you). 

3)       Leave enough room for plants to grow.  (Know what plants grow up and what plants grow out).

4)       Install a drip system. #LifeSaver

5)       Get some fertilizer stakes (I recommend Jobe’sOrganic Fertilizer Stakes). 

6)      Ladybugs and worms are your friends. Use them. (But again, have someone else do this part). 

7)       Certain flowers such as marigolds and nasturtiums will help keep pest bugs away so plant these flowers all around in the garden. 

8)       Pick your produce as it’s ready. 

Note: If you follow these steps and your garden fails I assume no personal liability. Instead, I will allow you to come over and work on my garden to learn from a pro because I’m nice like that. You’re welcome.

Find Me at "Life With Levi" Today

Tweet Hey, y'all!

After a brief holiday sabbatical, I'm guest posting over at Life With Levi about Why I Chose Cloth Diapers.  Take a few minutes to check it out.

BONUS:  You can enter the Stocking Stuff with Fluff giveaways all week long!

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

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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: www.backyardchickens.com

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?

Mitochondrial Disease Awareness Week

Tweet 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 there...you 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)...

Remember the Mito Angels we have lost.

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

Mitochondrial Disease Awareness Week: A Great Day

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 Today's post for Mitochondrial Disease Awareness Week comes from Terra, a Mito Mom I met through Twitter.  Terra blogs at www.terratalking.com, 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 terra@2sisphotos.com.

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."

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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.

Mitochondrial Disease Awareness Week: Wish GRANTed

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 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.

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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.

Mitochondrial Disease Awareness Week: LCHAD

Tweet 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.

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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.

Tomorrow is Another Day!

Tweet Hey, y'all, I'm guest posting about Charleston, SC for Angela Noelle over at Tomorrow is Another Day.  Take a few minutes and travel over her way to see what I had to say about one of America's friendliest cities!

The Mahogany Way Birth Cafe

Tweet Darcel, the creator of The Mahogany Way Birth Cafe, is an awesome woman, mom, & activist I've met thanks to Twitter. She recently decided that she needed to feel a void in the blogosphere, so I'm doing my part to help her spread the word.

She is a "birth junkie," as she likes to call herself, & has had difficulty finding finding a variety of birth stories being shared online, especially the birth stories from women of color.  The reason for her passion is clear:

 I was not informed of all my choices [about birth] so that is why this space was created. I want to help other women of color. Share stories, talk about all of our options, help them get in touch with good care providers, and do my part to help reduce infant mortality in the black community and the United States.

Darcel has put out a call for moms to share their birth stories through The Mahogany Way Birth Cafe.  We can all learn from each other's experiences.  This is not about natural vs epidural, homebirth vs c-section; it's about sharing what we learned and experienced so that other moms & moms to be can truly be informed and educated participants in the births of their children.  This week, she is featuring Klaw's birth story as an example of an informed, natural birth in a hospital.  All birth stories are welcome. Will you share yours, too?

Follow Darcel on Twitter @MahoganyWayMama.
Join the conversation at The Mahogany Way Birth Cafe on Facebook.
Email Darcel directly at TheMahoganyWay (at) gmail (dot) com.

Darcel has another blog, The Mahogany Way, where you can find information related to attachment parenting & unschooling, among other interesting topics. 

Taking Great Strides for Brady

Tweet  This year, we are participating in a Great Strides Walk for Cystic Fibrosis as part of "Brady's Bunch."  Brady is the son of our friends, Jeff & Darby, and he has Cystic Fibrosis.  We met Jeff & Darby through the Navy when our husbands served aboard the USS New Mexico together.

Darby maintains their blog Keep On Going...No Matter What!  They hope to get the word out about Cystic Fibrosis and some of Brady's other medical conditions just like I hope to spread the word about VLCAD.

I asked Darby to write a guest post for our blog because I've learned so much about Cystic Fibrosis through her & Brady.  I've also learned a lot about about how to keep my head above water while working through Klaw's genetic disorder.  Enjoy!

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Brady is the happiest little boy you'll ever meet. He doesn't have a
care in the world...he loves his life, just the way it is, and longs
for nothing! Don't you wish to long for nothing one day? I sure do:)

Even though he's made to do 2 breathing treatments, 2 chest therapy
treatments, take 10 medicines, and do multiple g-tube feeds each day,
he is just the happiest thing ever! He looks forward to his breathing
& chest treatments as they are "fun" for him. He even fake coughs
when he sees the equipment! Why is all this necessary for Brady?

He has Cystic Fibrosis... what is Cystic Fibrosis?

We feel honored that the Lord chose us to be Brady's parents, to take
care of him, to raise him, and to love him. We wouldn't want him to
be any other way than he is...regardless of how long he lives.
Currently the life expectancy is about 37 years old, and Brady's 2.5
years old right now. We have plenty of time to show the world how
much we love our son and plenty of time to get the word out about
Cystic Fibrosis, which is a progressive disease with no current cure.
Brady will spend his entire life fighting to breathe...what will you
spend your life doing? Personally, I'm an avid runner, as running
clears my own lungs of whatever is in them, and running will clear
Brady's lungs of all the bacteria/infections in them on a regular
basis. Running is the best form of "natural" treatment for Cystic
Fibrosis patients, and we can't wait until Brady can learn to
run...walking is first on our list though...
he's almost there, but not quite.

Here's a quick example of why running is so important for CF
patients...take a minute and check this out...

Every spring is the Great Strides Walk for Cystic Fibrosis...this will
be our second year walking as last year Brady was in the hospital on
the day of the walk so we weren't able to go.

Check out our Great Strides Page for more information on the walk.

We want CF to stand for Cure Found!

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If you would like to make a donation to help find a cure for Cystic Fibrosis,

I've added Darby's Great Strides widget to my sidebar.