Monthly Archives: January 2016

So strange…

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Ten years ago I decided that our local Childrens Hospital no longer got to be involved in Danny’s care. We had a long stretch of doctors choosing to not look for the underlying cause of Danny’s physical symptoms….they were dismissive and condescending.  Across many specialties. They stopped at the autism label. I used to complain that if either one of my typical kids presented with any one of the multiple physical ailments, it would have been a completely different story. 
Thank goodness for Dr N and the Cleveland Clinic and Dr Pam’s willingness to fight for our out of state referrals to consult with anything that has arisen over the last decade as I just did not trust our Children’s. 

We a follow up with the neurologist that we saw eight weeks ago. 

I can not believe the 180 in the attitudes of the professionals now than from how we were treated ten years ago to now. I’m treated not just as mom, but as the lady who is the expert in D. We consult and come up with a plan together rather than the docs informing how things are going to go.  

It’s going so well, that I’ve asked for a GI consult to see if we can find a doc that we can work with who also has privileges at TCH. To be able to coordinate care under one roof just forty five minutes from home rather than eighteen hundred miles would be amazing. 

Btw- neuro doc is staying on board team D….we will change it up when she feels like she’s in over her head.  Which is great as I really like her and her honesty with her comfort level and knowledge base. 

D likes her too. She’s young and cute. And spent the time to reassure him that his X-ray (MRI- but X-ray is how he’s labeled it) was just fine and there was nothing for him to worry about. 

   
 

Stock Show!!!

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We only get here one out of three years, between the weather and Dan’s health. 

But boy oh boy, when we make it, we have lots to talk about.  And chat we do. So much language talking about the cows, horses, donkeys, sheep, chickens, ducks, and Cowboys. 

And the folks here are so kind. Inviting Danny to pet these ginormous animals. 

We always have so much fun.