How do you cut off a disabled kids medical covrage?
I just came back from attempting to pick up one of Al's prescriptions.
The Pharmacist informed me Al was no longer covered.
Thank you incompetent TANF worker.
If I were to purchase this medication it would cost me $300.
Three of them I pay for out of pocket anyway, because Medicaid won't cover compounded prescriptions, and Al can't swallow pills.
The script I tried to get today can be sprinkeled on food.
I am ill.
He has enough GD challenges without this shit.
He has successes also.
Al has typical bully problems at school.
So today he tells me "some big bullys (aka 4th graders) had to come be in my class, because their teachers friend got shot in Dallas and so she wasn't there today."
(Is that so Al?)
"Yeah and um, one of the big bullys let me have cuts in the lunch room and then told me his name was really 'WooWoo', not Richard like Mrs. Monroe said"
(WooWoo?)
"Yeah and um, then on the playground WooWoo and some of his friends played with me, so they ended up not being big bullys after all, but BIG FRIENDS!"
I stuck my hand in the back seat and he promptly gave me five.
I utterly adore this little guy.
Al is small, so small people think he's in Kindergarten.
I don't sugar coat it, he knows he'll never play for the NBA.
Al has mitral valve regurgitation, a tricuspid aortic valve and an increasingly enlarged aorta.
These are secondary to a connected tissue dissorder called Ehlers Danlos Syndrome.
There are nine' types' of EDS and Al has a bastardized version of vascular EDS...they think.
He definately has classic EDS, with the hyper extensible joints and doughy thin skin, which is not all that uncommon.
Jim Carey for example or The Great Harry Houdini perhaps.
But the cardiovascular and GI symptoms Al has are all vascular EDS, which can, without proper prophylactic measures, be life threatening.
The problem with the treatment, began with the diagnosis.
As a rule, individuals with Classic EDS can't have vascular EDS, and visa versa.
Oh yeah?
Al and I are both in a study's at Johns Hopkins Univ and The Univ of Washington to try and determine the...
ok, this is where if I keep writting about this topic, those of you with a medical background will realize I have no idea what I'm talking about other than what his Geneticist has told me.
I learned the hard way not to Google EDS and drive.
I have to get creative quick, because if I wait for TANF to correct this mistake it will be too late for my child.