Life with Jack: Wordless Wednesday. . .

Wordless Wednesday. . .

Wednesday, October 26, 2011

{a long night}

2 comments:

Kyla said...: Feel better, Jack!; October 27, 2011 6:20 AM
Debbie said...: Oh Heidi.....the picture, then just got caught up on your post below that.....

Don't beat yourself up over the "brain blip" at the appointment.....it happens!
My first thought was just email him what you forgot, but of course you knew that.
I know that awkward silence as dr s stares at your kid, types away....I always wonder what he's thinking....
You are doing a great job on Jacks behalf, and he is so lucky to have you.

I'm sorry for the sock in the gut when it comes to hope....I pray our boys will have a chance to see benefits from some of this coming through the pipe line.....don't think too far down the road....the unknown is scary....focus on today,....it helps to remain grateful for having our boys here, when so many have and are loosing their battle. Hugs to you....; October 27, 2011 3:54 PM

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Welcome! I'm Heidi. After years of working, I'm now a busy stay at home mom of 4 amazing kiddos with a very expensive art degree! I love photography, as you can see I dont have to go far to find great subjects! I'm also a wife of 18 yrs to an incredible guy. We make our home in the NW, near Seattle WA. What started out as just for fun, blogging has in turn been a form of therapy for me as I learn to cope with our youngest son's diagnoses of Mitochondrial Disease. I hope in some small way I'm also helping spread awareness to this progressive and devastating disease that affects so many other families. God continues to give me strength and always reminds me how blessed we are.

a spirited and spunky 9 year old and our little hero. He entered this world 5 wks early, fighting from the very start. After years of therapy, too many tests and procedures to count, including 2 misdiagnoses, in 2008 he was diagnosed with Mitochondrial Cytopathy I+III & IV. Mito is a progressive disease affecting any organ in the body, currently there is no cure. Jack has many issues but his low muscle tone and GI system is what he struggles with most. Jack has been 99.9% G-tube fed since age 2. Despite his daily challenges, he's stable today. We continue to manage new issues as they arise and do our best to keep him well. He's one amazing little boy and my heart.

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Wordless Wednesday. . .

Wednesday, October 26, 2011

2 comments:

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About Me. . .

Jack. . .

Senna. . .

Easton. . .

Logan. . .

Another Mito Angel

Mags, 6.18.08 - 2.26.11

Ella, 8.21.08 - 5.19.09

99 Balloons

So what's Mitochondrial Disease anyway?

Previous Posts

{Faces of Mitochondrial Disease, Jack 5:13}

{before Jack's Mito diagnoses, created 3.11.07}

{Life with Mitochondrial Disease, pray for a cure}