we are all human..

We went to Disney for a couple days and it WAS magical. I honestly felt like everything was ok in our world for a couple days and maybe this god awful disease didnt exist. The third day or so Owen's body said enough and he was exhausted physically and mentally. Scarlett was in heaven loved everything from the princesses to the pirates. The real world came back when we got home and Owen had xrays, ekg,bloodwork etc...He has developed scoliosis from weak muscles.We will have to monitor him every 6 months as the curve can progress. He had an abnormal ekg that they are going to repeat in a couple weeks. Owen's legs need some support when they are tired and he was fit for superman braces for his legs. Thanks alot you terrible, miserable god awful energy draining disease. I know things could be ALOT worse but I am only human and he is my son. I remind myself daily how lucky we are but there are days when I am angry. All of this testing does not end when you walk out the door, we live it daily with Owen's anxiety and fear. He now wonders why, why do I go to the doctor all the time? Yeah, dont worry I play the strong roll,"well Owen this is what we have to do". I believe god chose me to be Owen's mother for a reason. I understand him from his soul outward.My mom was over last night and for the first time I realized she understands me that way. There is nobody else, I love you mom. People change on the outside as they get older and maybe sickness sets in but the bond between mother and child never changes. We are all human,remember that somebody else's struggle may be on the inside...

birthday wishes...

Here it goes another year older and definitely have gotten wiser. Owen has been thru alot lately we went to Cincinnati Children's Hospital for a week. He was poked, scoped, etc..It was a great appointent as they are looking more into the root of all the issues. He is severely deficient in his fat soluble vitamins and they are checking for malabsorbtion. The other thing we are looking at is immune system problems, which are common with mito kids. They started him on a med that is supposed to help with chronic pain. I feel we have found great doctors who can help find out more about my medical mystery child. Scarlett is doing great and it is very important to me she feels the same love as Owen. I can be honest and say lately I feel overwhelmed with our situation. I almost feel like not answering the phone or the door. I can't pretend some days, I just can't. If I had a cake in front of me with candles, I would close my eyes and wish....

It's been awhile...

I have had several people ask me why I have not written in so long. I think Owen's situation overwhelms me at times. When you have mitochondrial dysfunction there is not 1 doctor that does everything. We are always seeing our different specialists to keep tabs on how he is doing. Owen is doing extremely well, compared to other children who have this disease. We have had another muscle biopsy at the Cleaveland Clinic, its showing his mitochondria do not work right. There are only 2 places in the country to have a correct biopsy done Cleaveland and Atlanta. We did not know that, or we would not have done the one here orginally. Owen still fights his battle with fatigue, "tired legs", chronic headaches, chronic stomach pain etc....BUT he does not let it stop him as some of you saw during the holidays. I want to stop him but I am learning to let him make decisions for himself. He is looking at possible sinus surgery coming up because he is on a constant antibiotic for sinus infections. The ENT did an extensive workup, his immune system works but at the very low end of normal. He was also tested for cystic fibrosis due to slow weight gain, chronic sinusitis and it came back borderline. I do not quite understand that but he is being restested. We are going to Cincinatti in Feb for a week to find out if we can help his stomach condition "eosinophilic esophagitus"....biggg word huh? It is basically chronic stomach pain due to an allergis response from food etc. I guess this is why I have not written. I feel defeated some days because he lives at the doctors. Alot of people do not understand this but when you have a multisystem disease, you see the specific doctors for that condition. We see neurology, allergy, ENT, GI,cardiology,endocrinology etc...
Owen is kind of "done" in laymen's terms, no more he wants to scream. I scream it too when nobody is around but what am I supposed to do????? I have learned this is what we have to do, to stay on top of this illness. I have also learned it could be worse and be thankful it is not. Owen is an amazing,smart, beautiful child! I am proud to walk this walk with him and fight this battle.

I know it's been a long time...

Sorry it has been so long, we had a rough summer with Owen. The heat took its toll and we spent most of our days indoors. Owen was also diagnosed with a stomach condition called eosinophilic esophagitis....basically every food he eats makes his stomach feel "pukey and pokey" in his words. We are now battling chronic stomach pain and headaches, he also had his diet restricted more so now we are dairy,egg,soy,beef,all nuts and gluten free. On the positive side of things he has started kindergarten and is doing awesome, I do have one smart little boy I must say. We went back to our mito specialist at Cleaveland Clinic and he wants to do another muscle biopsy there on him. We are awaiting insurance approval our it would cost 22,000 dollars. The reason for another biopsy is the first one is so abnormal he wants to get more and better info. They are also doing a blood test to rule out Myotonic Muscular Dystrophy causing his mitochondrial disease. We are waitng for insurance approval for that test as well.....if you know me I HATE WAITING.
Scarlett turned 2 and is fiesty as ever. She is my beauty and I love her so much. Her health has been fine so far. We sleep on the floor of her room together alot and I look over at her and my heart melts. God delivered this special little girl to make me smile when I need it most.

I have tears today...

"The Special Mother" by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

hmmm sleep would be nice

Well it is about 3:22am and I can't sleep! I wish I could blame it on Scarlett but she is actually sleeping right now...hopefully.I just gave Owen some tylenol to help bring down his metabolic fever...yep that's right wierd I know.He played alot the day before yesterday and now he is fighting bad stomach pain and a fever that goes up to 103. He is dealing with a chronic stomachache for over a month now and we are waiting to have him scoped.I can see his body fighting itself and it scares the crap out of me, but this is his reality. Yep...his reality you play like a healthy 5 year old and your body goes haywire. So what are my choices be a overbearing,suffocating mother..or let him do it and pay the price. The scary thing is if his energy gets too drained he could regress or lose more healthy mitochondria and then what? Let's see end up in a wheelchair sooner, or maybe start having seizures. I don't know the answer that's why I am writing this at 3am in hopes of my brain relaxing a little.
Scarlett is still helathy as a horse and as beautiful as they come. We are having alot of sleep issues since moving her into her big girl bed. We seem to spend alot of time together around 2am or so. I almost dont mind in the sense we can bond be together just her and I. She makes my world alot brighter that is for sure:)I can't believe she will be 2 soon! Ok with all that said I hope my mind can now ....nope Owen just called me, no sleep for mothers right?

Mitochondrial disease symposium...

My husband and I just returned today from 5 days away from the kids. I know we both really neede it but it was a bit too long. We actually spent 3 days in Phoenix at a mitochondrial disease symposium.. It was a great experience with people that actually understand our situation and live it everday themselves. There were doctors and families who came together to learn more about this disease, I felt at home. It was a truly remarkable and I am so thankful we were able to attend. Mike and I then ventured to Vegas for a couple days, the whole trip brought us closer together. Owen is hanging tough, although the summer is kicking his butt. He has developed alot of stomach problems lately, so he will be scoped in the near future. Scarlett is growing more beautiful with each passing day and her smile gives me strength to move forward. I am blessed, I realized that while I was away. My path may be a little different than others but I own it....