Garrett has Mitochondrial Disease.
That's all I feel like I can say about that.
But it isn't all I can feel about it.
It is unfair, scary, and an unknown territory.
There's a huge, purple and orange elephant tromping around in the room everywhere we go.
Some say that Oscar and I will get to a point where we know the elephant is there, but it doesn't cause us to react or to feel so awful having it right there.
Right now I don't know that that point can come soon enough.
Irrational thoughts of what it would be like here without one of our children. God, please no.
We do not know the exact type of mito we are dealing with, but based on the types the specialist thinks it will be, the future is, well, let's say uncertain, at this point. 
I will share more another night. We are in Idaho house hunting this weekend. Or maybe I get more exciting calling it homestead or house hunting!!! Looking for a cooler place where Garrett and Addie will be more comfy, and all three kiddos have more room to roam!! We think we have found a perfect little farmette out here even with a guest house!! We will finally get to see it and several other potential homesteads very soon. 
Thanks for checking in, and when the dust settles with a diagnosis for Garrett, the final test that yields that info will be run on Addie....jsut a blood test. 
Read "Diagnosis Search" and "Muscle Biopsy" from the menu on the left to see the actual results and more details.
Blessings, and watch out for the elephant poop if you come to our house...... 
Lorraine
11/7/2010 03:14:32 am

Dear Clara-Leigh,

Hi, my name is Lorraine. I am Mom to a beautiful, three year old little boy who has hypotonia. I came across your blog as I was searching hypotonia sites as I have been for three years.

We have being dealing with the unknown in regards to Ethan for three years. So many specialist and tests have happened along the way since then...it's hard to remember where everything starts and ends. MRI's, ultrasounds, x-rays, x-ray procedures, nuclear medicine, blood tests, blood tests, blood tests, (ohhh...and did I say blood tests?), muscle biopsy, and for the first year of his life monthly visits to physiotherapy and occupational therapy. He has so many specialists: pediatrician, neurologist, metabolic/genetics doctor, cardiologist, respiratory doctor, feed doctor, physiatrist, and urologist.

Needless to say, our search for a diagnosis has been a long and grueling journey. Within the last three years, Ethan has also had numerous medical issues that have arisen like seizure, aspiration pneumonia, torticollis, acute and chronic urine retention (that did require hospitalization), constipation, etc. It seems we are always dealing with a medical issue which result in ensuing tests. This past June, he did have a muscle biopsy, which revealed what we already know about Ethan clinically so, in other words, non-specific findings. Specimens were also sent to a lab in Pennsylvania to test for a specific type of Muscular Dystrophy so we are therefore awaiting those results. Waiting is tortuous, as you know, all to well.

I can relate to so many of your worries and concerns. My heart is always heavy, my brain is tired, I feel scared, and I am always aware of the unwelcomed elephant in the room. Watching our little boy struggle for strength and waiting for skills to come is torture. It’s nice to know I am not alone, thank-you for sharing your story.

I crave a diagnosis for a clearer picture of what might be in store for our little guy in the future…. and so, the journey continues.

I wish you and your family strength as you navigate Garrett’s diagnosis of Mitochondrial Disease. You have a beautiful family, Clara-Leigh.

Lorraine

Reply
4/15/2011 05:34:48 pm

If you wish to be the best man, you must suffer the bitterest of the bitter.

Reply



Leave a Reply.