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Annette Maughan
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84 followers
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Secret combinations, bribery or blackmail?
Finding a happy medium...not such an easy thing. For years, Bug has been overlooked in a lot of ways. I was told it was because I annoyed people, to which my response was: that doesn't make me wrong. But I keep coming back to me being the reason he is not...

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Tethered
These last few months have been emotionally draining, if you couldn't tell by the last post. Bug's surgery for tethered cord was an amazing success! I was a wreck and at one point, he developed a fever. I had a small freak-out, but I am allowed to do that n...

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It's been a while
I'm trying to decide if this will be my last post on this blog. I used it to keep track of Bug's Medical changes so it was all fresh whenever we talked to his Doctor(s). Then it turned into lobbying for Bug and then back to Medical and then...I began to fee...

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The Week
I admit it: I'm at the edge peering over the side. Bug's seizures have held steady at no more than 4 a day. They picked up recently but still less than the last year. He had a day that was scary and nearly ended up in the Emergency Room. He would walk aroun...

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There IS beauty out there
When it's rough watching Bug struggling to walk, laying on the ground curled up in misery, I can spend days crying over his loss of function (and have) or I can look for positive things. Found one. This brought tears of joy and then THIS escaped my mouth: A...

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Really real.
There comes a time, in a special world, where there is an ugly thought that passes through your mind. It also comes with any chronic condition. It IS inevitable and the sooner you learn to face it down the better it is when that thought comes. I first had '...

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The hardest thing
Special needs life is not for the faint of heart.  Yet, so many have faint hearts and so many families don't survived intact. Our family has had its strains over medical treatments and sometimes even over what Bug is feeling. What his body language says. It...

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Typical referral failure: now with enhanced collapse!
I have been patient, I have been nice, I have been respectful and am continually ignored. We went to Boston to the official Tethered Cord clinic on May 23rd for a second opinion and left with little more than we came in with. We were told that his spasticit...

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A surprise - for some.
Last November, when Bug was in Hospital I asked repeatedly for an endoscopy. I asked for it then because he was heavily sedated and miserable anyway so why not have him recover there? BUT, we deferred to staff and waited. On May 1st we took Bug to get that ...

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Abnormal test? The hell you say!
I started writing this post to detail the amount of times Bug has been refused testing and the number of times we have had to wait for results, beyond normal limits, that is. I was going to point out how his ABR was abnormal and recommendations were made to...
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