No Mito Allowed!!!

No Mito Allowed!!!


I love pictures, especially ones I take!! Of people I love!! And of things I like!!!

The theme of this entry is NO MITO ALLOWED!!! And I mean just that.

These are photos of our beautiful, perfect Garrett during moments Mito cannot taint, shadow, or ruin. It's the raw footage of the fun stuff. Playing outdoors in the water, goofing off when he should be napping, and enjoying the affection and huge heart of his big sisters Addie and Ainslee. I try to hard to photograph these times because they are, of course, the way I wish things could always be. No frustrating behavior, lack of communication, frustration, tiredness, constipation and tummy trouble, worries about the future or how we will survive the day!! While Mito affects our family and occupies our thoughts many times daily, there are just some things it cannot touch!! So today, as we are in the middle of Mitochondrial Disease Awareness Week, if you or your loved one(s) are affected by Mito, then try to focus on the things, even if they are the tiniest moments, that take your breath away about your child. What can Mito not take? Can we just for a moment give Mito the finger and smile, celebrate, and laugh in its face. We all need to!!

Godspeed,

Clara-Leigh

Mito Interview For Awareness Week

It's here!! Welcome to Mitochondrial Disease Awareness Week 2011.

Another mom of older kiddos with Mitochondrial Disease used an interview format to share thoughts on her family's life with Mito to increase awareness this week. I hope she doesn't mind me stealing her neat format and sharing my thoughts in the same way.

21 Questions: An Interview About Mitochondrial Disease and Your Family

1. What type of Mitochondrial Disease does your child (children) have?

Our son had Mitochondrial DNA Depletion Syndrome, and his doctors suspect his oldest sister has it as well.

2. When was it diagnosed?

June 2010

3. At what age were symptoms first noticed?

At 12 months, we knew something was up but had never heard of Mitochondrial Disease, or Mito. Looking back to before that age, there were some soft, innocent-seeming signs much earlier.

4. What is the biggest adjustment your family has had to make?

Learning to do things as a partial family has been the hardest......having to leave Garrett behind while the other four of us do activities is certainly not how we envisioned life as a close family.

5. What Mito gene does your family have?

We do not know yet, but more and more gene tests are leading to new ways for us to learn that, hopefully soon.

6. How do you explain Mito to someone who inquires?

Mitochondria are the power plants in every cell of your body except red blood cells. When there is a problem in the power plant of a cell, an energy deficit results. In our son's case, his brain, skeletal muscles and GI tract are affected. The range of severity is different in every person, ranging from not obvious to profoundly and severely affected. There is no cure, and most types of Mito are progressive.

7. What assumptions do people make about your child?

"Oh, he is so busy! He doesn't look sick! He certainly doesn't lack ENERGY from the way he is active!" Totally wrong. His random, unorganized use of energy is merely is brain's way of misusing the little he has to an extremeand further depleting the little bit of energy he has. And the "sick" you cannot see is because you cannot see his mtDNA depleting lower and lower and his mitochondria functioning incorrectly.

8. What is the hardest part of each day?

It depends. Sometimes it is the many, many times of each day where dealing with behavioral issues seems like a task we can no longer handle. It feels hopeless often. Other days it is looking at Garrett while he has his shirt off, realizing how wasted and little he is. Then others it is at night, after I go to bed and before I begin to pray, when my mind replays his Mito specialist telling us he has a progressive, incurable disease. For Garrett, the hardest part of the day is taking his "yucky medicine!!!!"

9. How many doses of meds does your child take daily?

16-20 depending on his daily GI status

10. What Mito-related support organizations do you support and/or use?

United Mitochondrial Disease Foundation, MitoAction, and the Muscular Dystrophy Association

11. How does Mito affect your child's education?

Because of the effects it has on Garrett's brain, he is functioning as a 2.8 year old to a 3.2 year old when he is now six years old. He is ADHD, on the Autism spectrum, has sensory processing problems, and anxiety.Thus he was in a special needs preschool for two years and now attends a special day class program in a public elementary school where aides take him to some kindergarten activities as he can handle them. School is 5 mornings per week and drains him many days. But he LOVES school!!! We currently do not know what to expect as far as his future for his learning.

12. What would people be surprised to know?

Maybe it would be surprising to know the roller coaster this has been. One moment we can be in the pit wrestling with words like "progressive, life-shortening, usually fatal," but in the next moment we can read a letter, a comment here, or have a hug from a member of our church, neighborhood, or family and realize how blessed we are. Most of all, the blessings have outweighed the curses a million times over.

13. What is the hardest thing to accept about Mito?

That this disease can kill our child anytime and there is no cure and no protocol for how things will go and how to treat them. The helplessness.

14. What is your opinion of Mito awareness to date?

It is astounding to think that this is as common a disease as childhood cancer, yet 99.9% of the people we come in contact with have never heard of it. We have lots of work to do!!

15. What is something you feel your family misses because of Mito?

We miss what we envisioned for our family: closeness, completeness and an active lifestyle including showing ALL of our three kiddos the world. We truly feel the gaping hole where Garrett is missing when we have to leave him behind. We also have had to grieve the loss of what we thought would be a normal, healthy child and face the cold, hard possibilities of future decisions.

16. What has Mito taught you?

Sounds cliche these days, but we have to take note of the wonder of this life each second and not waste time in selfishness and worry. People who do not even know you can end up being your best supporters and cheerleaders and comrades through sharing this Mito experience through the internet. It has also taught us to look for the good in everyone. AND NEVER, NEVER judge on snapshots you see of others' lives!!!

17. Please tell us a secret! What do people say that gets under your skin the most, but you could ` never tell them about face to face?

There are two things. One is the oh so common "wow, he looks like he is doing so WELL!!!" I know they mean well, but they have no idea what this is like when they aren't seeing the snapshot. Second, it's not really under my skin, but it gives credit where credit is NOT due: "You guys are so amazing to handle this situation with Garrett. How do you do it?" Honestly, we do nothing special whatsoever that you would not do if Mito lived in your life. We have no choice. We don't choose this, and in our shoes, you would do the same. You could handle it probably better than we do!!!

18. What is your favorite thought, quote, or scripture that keeps you going in dark times?

Wow, the entire Bible is full of scripture that moves and motivates me, but when all else fails, I think of eternity and how we are on a little field trip here on Earth. Someday we will be together in perfect bodies, and I cannot wait to talk to and play with and get to know Garrett again then. This is but a blink of an eye. Wow.

19. When someone's child is diagnosed with Mito, what would you like to tell them?

Find support through others walking the same path. Mito parents are simply amazing. There are numerous online message boards, local support meetings and camps. Get plugged in, get mad and raise awareness and research money, and carry on!!!! And science is moving rapidly in the direction of Mito as funding increases and so does awareness. Above all else, lean on God and He will sustain you!!! And call me......I promise I can make you laugh!

20. What is something that surprised you about Mito?

I am most surprised to learn how differently even siblings with the same exact gene affected can have such a varied expression of the disease. I am also astounded to know that one out of ever 3000 children will develop Mito by age 10. And that number is increasing as research pinpoints more types.

21. Anything else you would like to share?

THANK YOU for reading this. Please spread the news about Mito. Your prayers and support are felt and seen. We appreciate you!!!!

Godspeed,

Clara-Leigh

My Daddy Rocks!!!!

MY DAD ROCKS!!!

You just never know what might be going on outdoors around out house on any given day. These are some of the most wonderful times.....these are some of my favorites!! In the past I cringed when I saw the fun and felt like I was running a race to go get the camera in time. But now I usually laugh so hard on the way to the camera that I have trouble running!! Yesterday was one of those times. This second photo is one of the many I took as Grouchy took Garrett around and around our horse grazing pasture as the sprinklers (Irripods) were running. Garrett was all smiles and laughs and occasional blood-curling screams of terror as the water shot him in the face!!!

The last shot is of one of Garrett's first driving lessons on a real tractor. A few moments later, I looked out to see him driving all by himself with Grouchy walking alongside!!

And the first, a flashback to winter last year when the snow was on the ground. It didn't take but a dusting of snow for Grouchy to hook up the sled behind the four-wheeler and have redneck sledding at its best!

And what do these things all have in common??? Grouchy! My husband is the most amazing man. He is my best friend, a Christian mentor and leader in our home, an incredible dad, father, and daddy. I am so thankful!!!!

Godspeed,

Clara-Leigh

Horse Fun and Garrett's G.I. Appointment

First, let me share some great news!! No, two bits of great news.

1) After much prayer and serious lack of patience on my part, Addie has a terrific new horse to use for a while. His name is Big Red. He is 22 years old, but don't let numbers fool you!! He is sound, sweet, and oh so pleasant to ride!!!! We thank Joan for letting us borrow her sweet gelding. He is like our Ernie. Joan has had him since he was 5, and Big Red raised her son on his back!!! It was a tearful exchange, but we are honored to get to learn from him!!!

2) I give thanks to God for pulling Ernie, Ainslee's gelding and my first child, through a very scary medical episode. He was twitching all over, eyeballs rolling back into his head and having trouble breathing!! I seriously thought we were losing him. We had the vet out, who thought it was the West Nile virus, but over time he improved back to normal. Then I remembered the acronym HYPP which is a genetic mess up in horses with the sire Impressive anywhere on their papers. Like our kiddos with Mito, depending on the genetic pattern or inheritance, a horse can have it or carry it or have and carry or not have or carry. We never had Ernie tested because he cannot breed as he is "fixed," or as I say, "broken." And he has never had any episodes. So while talking to my sweet friend Vicki about it last night, it hit me that it was the HYPP. SO I researched and we need to change Ernie's feed so we decrease the potassium, and that should prevent further trouble. I was scared to death, but I am so, so thankful it turned out well!! THANK YOU GOD!!!!!

So today the girls wanted to do photo shoots with their horses. Addie is in the hat with Big Red, and Ainslee is with her 3 year old project, Dusty.

And in Garrett news...... We saw his G.I. nurse practitioner on Thursday. Need I once more say how much I love this lady???? Garrett had Megacolon at the end of 2010, meaning his colon alone could hold 7-8 DAYS of stool, leaving Garrett unable to have any sort of sensation or control of that area to help him evacuate. Now that has improved some with more months of Miralax and Exlax. However, his constipation is still very bad. She says he has solid poop that is building up in his intestines but never emptying on time, so then he has lots of very nasty, old, stinky sludge slide past the solid stuff and cause days of no movements then days of many blow-outs with no pattern even on meds. She switched him to Lactalose from Miralax and ordered another cleanout. Hoping we get him cleaned out by Monday!! SO he has to take more than usual of the meds and we wait for 3-5 watery, almost clear stools within 24 hours to know his system is purged. And just when he was wearing big boy underpants and urinating all the time on the potty......gggrrrrr. The NP also says to leave him alone as far as pushing him to have bowel movements on the potty. She wants us to just try to get him where he will ask for a pullup or go into the bathroom with a pullup on to poop. She does not think he has control or awareness of his bowels enough to use the toilet for #2. Meanwhile, she brought up his hoarse voice again. She thinks he is better in the upper portion of the GI with his reflux in that he has healed in the esophagus some, but she is worried he may be damaging his airways with the reflux. The Prevacid helps with the acid but not the physical act of reflux. She is also concerned his airways are not staying open enough due to his low tone. So off to see pulmonology and ENT next. And he is due to see cardiology as well. We hope to see Dr. Koenig, his Mito specialist, in Houston in October or November. She brought up the possibility of Garrett needing a Nissen Fundoplication again. I cringed. This procedure would tighten up the top of the stomach to keep anything from being able to reflux upwards. We thwarted an attempt bu surgeons to go this when he got his feeding tube placed in 2006, but now it is mentioned again. We will see what the other specialist think. I am so thankful for the wonderful doctors in Boise and the access we have to great medical care coverage!!!!

School is going great for Garrett this year. He wakes up before me and wants to get ready and get on the THE BUS!!!!! He loves his teacher and her sweet son, Baylor, who he gets to push in his wheelchair all day!! Today Garrett enjoyed sharing a box of snacks with his class. While so many things Garrett can be so incredibly frustrating, reading a simple note from his teacher about his kindness to his classmates makes things all go to smiles. I also thank God for Garrett's teachers and aides and my dear friend Andrea who is doing his developmental therapy in our home. I can never repay anyone adequately for the love and support they give to our family!!!

On a "we knew it was coming but were in complete denial" note, my parents are leaving to return to their beautiful place in Alabama in a week and a half. I don't think any of us know how much of a huge hole there will be here when they leave. They plan to spend next summer here in our guest house, but that seems like forever away!!! Garrett will be asking about them for weeks after they leave, and he will be running over to "Papa and Nina's house" looking for them when he gets off the bus. He did this last time they left and it just made me cry every time!!!

Grouchy is home for a few weeks, and we are thankful for that for sure!!!! We are irrigating and just put up another cutting of hay. We hope to get a 4th cutting in a couple weeks. Fall is in the air tonight and the moon and stars are brilliant. I can't help but wonder how marvelous and breathtaking Heaven will be if Earth is this amazing!!!

Addie and Ainslee will be giving a presentation about Mitochondrial Disease and passing out Mito awareness bookmarks Sunday in their kids church program. That is our way of participating in Mitochondrial Disease Awareness week. More awareness means more funding which means more research which means better chance for a cure!!!

Godspeed,

Clara-Leigh

Random Photos

My hubby bought our homeschool classroom a MAC, so I am seeing our photos in a way I have never seen them....on a large, very clear new screen!! So this morning as I was browsing ohotos to email for a horse we are selling, I saw so many wonderful shots I never knew were so cool!! So I will share some with you!!

We plan to go to a couple of places in the desert mountains with my dad this morning to look for agate and opal. Should be fun!!

Godspeed,

Clara-Leigh

Mito Awareness Week Coming Up!!

The United Mitochondrial Disease Foundation is putting together materials for families and friends to use during Mito Awareness Week September 18-24. Go to their website to order free materials to use to help spread awareness during that week or just anytime:

http://www.umdf.org/

Meanwhile, we started school today!!! One day down....lots to go!! AND the really cool news is that we bought a Mac computer for our homeschool!! It is so pretty and new and SIMPLE!! I love simple these days!! I set it up tonight but cannot play yet because it needs to load updates. Since we live in a very rural area (LOVE THAT!!!!), our internet connection is a bit slow, so I had to walk away and let it all download overnight. How hard for me!!!!!This year we are using Sonlight and Math U See. Addie is in 5th grade, and Ainslee is in 4th. We plan to dive into Rosetta Stone Spanish this year....bought it last year but our home computer crashed!!! The girls will also be using a CD-ROM of World Book Encyclopedia as they will be doing lots of research through that medium this year as we dive into school!! Now they will have a nice, simple, fantastic computer to use for school and for the fun free time they earn.

Grouchy returns to Louisiana without us tomorrow to finish the early soybean harvest. He will be back in about a week and then have to go back one more time this year for the later beans to be harvested. We are sad when he leaves us, but we know we are doing our best as a family to build a business with a future. Have to pray it all works out, and we have pride in what we are doing. He cut our hay here in Idaho yesterday, and a neighbor will rake and bale later this week. We think this third hay cutting is the best yet. Should be after all the irrigating my dad helped us with this summer!! We are starting to get the hang of this irrigation thing. It is lots of work!!!

The photo I posted is a tidbit Aunt Becca made of Garrett!! We plan to help Grouchy's mom make a card with this photo to put with the bracelets she is selling to raise money for Mito research. She is quite the saleswoman, and several of the ladies in our family are making more to sell. THANK YOU!!!

And GREAT news for the Muscular Dystrophy Telethon. The 2011 MDA telethon INCREASED in money raised by about 3 million dollars this year in only a 6 hour telethon!!!!! I am so excited to see the numbers begin to come back up since the recession started!!!! A HUGE THANK YOU to any of you who gave via phone or online or contributed to MDA in any way in the past years. THANK YOU!!!!!!!!!!!!!

Prayers for the Mito kiddos inpatient tonight and especially those kiddos starting the new experimental drug. The future will be bright. We just have to give, pray, encourage and wait!!!

Godspeed,

Clara-Leigh

MDA Telethon

We flew home from Louisiana (which is also home!!) to Idaho early because Tropical Storm Lee was coming and would prevent us from continuing to harvest soybeans there. Grouchy even came home too!!! So we have about a week to have a "normal" week together as a family before Grouchy has to return to the business.

Since we came home early, I was able to make it to the Idaho MDA telethon to answer phones for a while. It was fun, and I met some more AMAZING families!!!! There is a strong support group here through MDA, and I hope we can get involved. This year, MDA was able to have some great artists on!! I was so excited to see this year's line-up!!! My mom went with me, and she enjoyed meeting people as well. Our phones were not working so well at first, but I think that the MDA staff got that straightened out. Lots of businesses were there to give MDA their checks from their contributions. Problem was, the phones were not ringing very much at all, and that makes me very nervous. Jerry Lewis had been the leader for the telethon for years and years, and this year was the first he was not on. I do think that the telethon has revamped and re-energized, but Jerry will be missed!

This week will be an adjustment week for our family as we send Garrett off to school Tuesday morning and then he has therapy at home for 4 hours, and then we plan to get this year of homeschool underway as well. The first day is always a little stressful as I think I am dreading any whining or complaining from the girls, but they almost always pleasantly surprise me!!! SO I am praying that it goes well and that with Garrett having his afternoon therapy almost daily, we can do better getting our school work completed each day. I know my girls are fine, even probably ahead of some kiddos as far as their learning, but I still always worry I am somehow not getting everything done!! We plan to do a four day curriculum called Sonlight this year again, so when we can do five days of school, we get an extra week of school done every 4th week, so that's cool since soon we will be enjoying snow skiing again!!

My parents.....wow, that's a whole 5-6 entries alone. They were so gracious to keep Garrett for a couple of WEEKS while I was in Louisiana with Grouchy and the girls for harvest. I have always bragged about having wonderful parents, but they get more wonderful each year and I could never thank them enough.
And my mother in law!!! She housed, fed, and kept us in clean clothes for harvest. AND she took marvelous care of Addie and Ainslee!!!

Telethon is still on, so it's not too late to give as of right now!!!!!

On the drive home from the telethon Mom and I had time alone to talk.....really talk. I vented some about the adjustment I go through when I return home after time away from Garrett. She helped me refocus and realize I cannot be resentful to my child and that we just have to move on, move forward.....keep going!!!!! No choice there. We can keep going in a frustrated way, or we can keep our chins up and move forward in proper style!!! But at one point my mom did get frustrated about it all and said, "Of course this is frustrating, but what is frustrating is this $^*^$%^$#%^&^*(*&^%#%%& disease that has taken over this child's body and mind!!!! He did not want any of this and cannot help it, but we have to just love him and help him!!!" And yes, she said bad words and her voice cracked, and it helped me not feel alone in this again. My mom and dad and husband and mother in law and so many friends and relatives are so helpful to get into the trenches with me some days and just be real.....not cheerleading or pitying but reminding me how beautiful Garrett is and how unfair and ugly Mito is. Thank you!!!

Hug your kiddos, say your prayers and get up tomorrow with a smile and a CHOICE to make it a good day!!!

Godspeed,
Clara-Leigh