Saturday, September 24, 2011

Mito Warrior

Today is the final day of Mitochondrial Disease Awareness week. I am sad to see it end, but I know that myself and others directly involved and in the midst of this fight will continue to spread the word and help raise awareness throughout the entire year, not just this one week. The kids and I are taking the time to remember all the precious Mito angels we have lost (4 alone this week), and those that are still in the fight with us. All of these children, adults, their parents, loved ones and friends, are Mito Warriors to me. I would not be able to be as strong and as much of a warrior as I strive to be without the support and love from the other Mito families that we have met and become close with through this continual journey. So, thank you to all of you. It's wonderful to know that there are others routing for us and are there to text you and call you and help you through hospitalizations, medical procedures, awaiting test results, and the list goes on and on.

I found an new Mito blog today. I am really looking forward to sitting down and reading her journey. She has an etsy shop where she sells items she makes by hand and gives a portion of her profits towards Mito research and helping to find a cure. She is also having a giveaway from her etsy shop of items to help bring awareness to others. Her blog is called: Little Free Radical

Finally, a reminder in the form of a picture of why we continue to fight, raise awareness, and pray for a cure. So no kids have to be hospitalized for a simple stomach bug like Landon was in this photo. Absolutely heart breaking that these children (and adults) have to endure so much so early in their lives, and even at all.

This is when Landon was in the PICU at 10 months old b/c a simple gastric bug caused his blood sugar to drop from 84 to 48 (2 points about when seizures begin due to extremely low blood sugar) in a matter of a few short hours. The diaper (white bulge over his hand) is covering his D10 IV so he would not mess with it or try and pull it out. If we would not have known about his VLCADD, it is very likely that he would have slipped into a coma, had major seizures from low blood sugar, and even died. No one would have known to give him a D10 IV, or even to check his blood sugars. It would have been, "take him home and push fluids, it's just a gastric virus." The newborn screening is so important b/c without we would have never known. Please help us spread the word and raise awareness for kids (and adults) like Landon.

Thursday, September 22, 2011

A Cure For Mito

Please take a minute, or six, to watch this amazing video about how complex Mitochondrial Disease is. Please help us find a cure.

Wednesday, September 21, 2011

Porch Lights for Mito!!

We have turned our porch Mito Green for the week! My amazing friend Nicole is also going to turn her porch green as well. It would have been helpful if we didn't have butter fingers and break not only the green light bulb right out of the package, but also the regular white one when we went to replace it..oops. Made for some good laughs though! So, we will hopefully be replacing it tomorrow (she lives across the street, yay!!)

Here's is how our porch looks! Are you willing to turn yours green to help raise awareness for Mitochondrial Disease and kids like Landon??

Tuesday, September 20, 2011

A few Mito Facts

I have gathered some important and interesting Mito facts from fellow Mito Moms, UMDF, and other various places. Please take a minute to read them, and see the fight that our kids, friends, and loved ones face.

~ There is no cure! Please continue to share this page and others to raise awareness for Mitochondrial Disease.

~ Mitochondrial disease is almost as common as childhood cancer, yet in the case of mito, there isn't a treatment protocol, no cure rate, only a handful of specialists and very little awareness!

~ Mitochondrial Disease is a debilitating and often fatal genetic disorder that robs the body's cells of energy causing organ systems to become damaged and fail. Think of a city, when it loses power completely it's called a "black-out" (and if it only has partial power it's called a "brown-out"), and during a black-out the city can no longer function properly, and sometimes shuts down completely. When a person has Mitochondrial Disease their body is like a city that is on a permanent "brown-out", with periodic "black-outs" (such as when there is organ failure or a mito crisis).

~ There is no treatment and no cure for this disease, and even in the medical community there is very little awareness of its existence (which often causes misdiagnosis and either delayed, inadequate, or non-existent treatment of the symptoms). We need more research and more doctors who both understand this complex disease and are willing to treat those affected. 

~ Every 30 minutes a child is born with a mitochondrial disease. Each year, there is an increase in the number of adults who are being diagnosed with mitochondrial disease.

~ Research tells us that between 1,000 and 4,000 children are born with a mitochondrial disease each year.

~ Research also indicates that 1 in every 200 healthy people may carry the mutation that could develop into a mitochondrial disease in their lifetime.

~  Mitochondrial Disease can masquerade as autism, bi-polar, celiac disease, Reflux (GERD), seizure disorders, scoliosis, auto-immune disease, chronic fatigue syndrome, anorexia (and other eating disorders), endocrine diseases such as diabetes, autonomic dysfunction…the list goes on...YET few are even tested for it?

~ Mitochondrial Disease Facts - Via, "How is Mitochondrial Disease Diagnosed?
   ~ There is no reliable and consistent means of diagnosis.
   ~ Diagnosis can be made by one of the few physicians that specializes in mitochondrial disease.
   ~ Diagnosis can be made by blood DNA testing and/or muscle biopsy but neither of these tests are completely reliable."
   ~ Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy.
   ~ As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death
      will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended. (

Please Help us Raise Awareness for Mitochondrial Disorders, not only during this week for Awareness week but year round.

Sunday, September 18, 2011

Mitochondrial Disease Awareness Week

September 18-24 is Mitochondrial Disease Awareness Week. Please help us bring awareness to this disease that plagues so many like Landon.

I will be posting things about Mito, raising awareness for Mito, and Landon's form of Mito throughout the week.

Wednesday, September 14, 2011

World's Best Brother

I recently got Landon a shirt that says this from Target (see picture below). It really does sum him up. He is so funny when it comes to him and E. When we are out and about running errands and what not, if someone comes up to Emeline he tells them "don't touch my sister." Most of them laugh and say, 'oh, how cute" and talk to him for a minute. Inevitably they turn back to E and again he repeats, "don't touch my sister." I always laugh and say he's very protective of her, and he truly is. Recently in August when he spent a day in the hospital ER for a small stomach bug, he repeatedly asked me, "mommy where's Emma, I miss her." He ran up to her as soon as we got back (she was at the neighbors, thanks Nicole!) and gave her a quiet kiss and hug b/c she was asleep. Even on his worst Mito days, he worries about her and wants to be near her. He is the only one that can really make her belly laugh, and the way she does it is reserved solely for playing with him. After everything this kiddo goes through he loves his sister so much. I know this sappy, but I had to brag on him for a bit. He goes through so much more than a normal child with meds, doctor visits, blood draws, simple stomach bugs and illnesses that other kids can fight at home he has to go be monitored or admitted, and he still has a heart of gold!

On a seperate note, I am looking into getting Landon a medical alert bracelet. Any suggestions?? I would need one that can with stand a 2.5 year old boy, but can also allow me to put all the information I would need to in order to make sure Landon gets the care he needs if for some reason I was not there with him (this is a huge worry/stresser for me).

As you can see, cooperation was not in order when it came to taking a picture in his shirt!

Saturday, September 10, 2011

9 months!

E turned 9 months earlier this week. She is so active and makes us laugh every day. She and Landon have so, so much fun playing. I really love that she is old enough now to sit and play with him. She just loves when I put them both in her crib and Landon bounces on his knees. She just laughs and laughs and laughs this giant belly laugh. I just love to sit there and watch them; it really makes me smile! She has been crawling for a few weeks now, but is really getting to be quick with it. She also started saying "mamama" last week and she says "yea yea yea" as well. It's so fun, I love this age with her. Her well check with her stats isn't until later in month. It had to be rescheduled due to some other things that came up. I will post those stats when I get them after her appointment.

Landon is doing well also. He just loves to play with "Emma" as he calls her. He is so very smart and is learning so much every day. He can now sing Twinkle Twinkle, Itsy Bitsy Spider, His ABC's, many songs he hears on Barney or Sesame Street. He can count to 10, although sometimes he skips a few numbers that I assume he views as unimportant. He loves to read, swim and play "baseball game" which is me throwing a stuffed ball decorated to look like a baseball at his equally soft bat.

We are excited to look ahead to fall, and hopefully cooler temps! We are also getting ready for Mitochondrial Disease Awareness week, which is later this month so keep on the lookout for that!

I had to strap her in to her high chair so she could still long enough to get a picture! She's perpetual motion!

He looks so grown up!