Tuesday, December 23, 2008

Everyone who hates incompetence, raise your hand!

Who can you strangle when everyone is pointing the finger at everyone else?! I have been in a battle with Jade's enteral supply company (Apria, for those of you who know how idiotic they are) since yesterday. I merely called to find out when she was getting her next supply of food (note: she's already 10 days late). I find out that some kind of authorization was needed to be signed by her doc for her food and supplies. Fine. I call her doc's office and they faxed this authorization on December 10th! Of course, Apria has no record of this and now they are telling me that this time frame for authorization has expired, whatever THAT means! I call the doc's office again, and this time the nurse calls Apria and gives them holy hell for not sending a child's food supply (you go girl!) and tells them it was faxed. Doesn't seem to matter, because when I called again today, they told me they are still waiting on the doctor's authorization. AARRRGGHHH!!! I cannot stand these people. Now, I am waiting on the nurse to call me back (she's gonna pull her hair out too). After Apria finally gets the fax they should have already had in hand, apparently the insurance company must approve it first before they can send her food. Thank god I have stockpiled her supplies because we would be in deep doo-doo by now if I hadn't. Bunch of backwoods dumba--es!

On top of all of this crap, Jade's running a fever. First temp today was 101.4. So much for her starting to feel better after the bout with the stomach flu. Now I know why she was seizing ALL DAY yesterday. Big, bad, ugly seizures. I have no idea what's going on, but I hope she kicks it in the butt soon. Speaking of seizures...gotta go :(
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2 comments:

Kelly said...

UGH!!!! How frustrating!!! Hang in there!

December 23, 2008 at 5:43 PM
Anonymous said...

I believe I have a big pile of dog poop I can send Apria for the holidays!

Thank goodness for your keeping after them and doing such a great job of taking care of Jade!

Merry Christmas to all of the family...hope to see you soon!

December 24, 2008 at 7:57 AM

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Our peanut in a nutshell...

Hi everyone! Thanks for visiting my blog. My name is Jade and I am currently 8 years old. I have a big sister and a big brother whom I love very very much.

I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.

Some of the problems I face include:

Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.

I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.

I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.

I cannot talk nor communicate with gestures.

I cannot walk, nor will I ever walk.

I grind my teeth. So much so, that some loosen during seizures.

I cannot grasp objects or use my hands for the simplest of tasks.

I cannot sit on my own. I can, however, sort of roll over from side to side.

I am choreoathetoid. I cannot control the jerky movements my arms and legs make.

I have life-threatening seizures every day. This is my greatest challenge.

So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.

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