All my BOYS!!
(ignore the time stamps)
I know, I know. You wonder if you should have your vision re-screened.
Yes, this is REALLY me.
I was NOT abducted to the best of my knowledge (except now that I think about it, my kids have been monopolizing all of time until lately).
I will attempt to briefly brief you (hahaha)
NOVEMBER 2009
Wiggles begins getting nauseated and falling down a lot. He deteriorates right before my eyes. He gets too weak to walk, too weak to stand, then he can only lay on the ground screaming in...pain?...frustration?...fury?...Hell if I know. But it KILLS me to see him this way. Nothing we do seems to help. Nothing comforts him. After hours in a downward spiral, he crashes. Throwing up for hours afterward. It takes him days to return to "normal". I feel helpless to this invisible vice that rips my child from my arms and renders him helpless and hurting.
Three days a week.
Then one day a week.
Then IT was gone.
DECEMBER 2009
Bad times people, BAD times.
This was a very humbling experience for J and I. We literally used up the last of our savings trying to stay current on our bills. I should probably elaborate on that a little...our normal monthly obligations AND Yummie's medical expenses. (For all of you who know; what is considered "medically necessary" from various doctors and specialists to find out what plaques your mystery child, and what said child's insurance company deems "medically necessary" are quite often never the same.)
We were once again DENIED by Medicaid.
I know, SHOCKING!! In October I applied for [benefits] for Wiggles.
On December 24, 2009 our lives were changed when, he was approved!!
YES! I cried and laughed and gave the Medicaid office the one finger salute from my driveway!! Because not only was he now getting [benefits] but full Medicaid insurance benefits too.
IT came back.
Last week of the month for only one day.
JANUARY 2010
Sotos testing came back...negative.
Geneticist swears that he has the syndrome however. She says she will begin talking to her peers at conventions about Wiggles and show his picture to all of them as well...I don't know how I feel about that. On one hand, I am glad that she feels compelled to classify my child. On the other hand, it sucks knowing that that is what she is trying to do, classify my CHILD.
We added another geneticist to his cause.
What is her initial impression???? She thinks he has Sotos Syndrome. Of course, right? We said, "Sorry, but he was tested for that and it came back negative." Much to our dismay she asked, "which test did he have?" Um................the new one...???
Apparently, there is a test for deletions which thankfully, we had negative results from already (meaning we wouldn't have to repeat this test) and a test for mutations, which we had not been informed about.
So you want to know what the results to the second test are, right?
Yeah, me too.
Only I am too much of a chicken s*#@ to go and have the second test. I have put him through the agony of test after test, doctor after doctor, and now that the end may be in sight... Now that we may be able to put a name to this face that has tortured us relentlessly (not literally--although...) for years, I cannot bring myself to do it.
I think I am afraid of knowing. Like, as long as we don't officially know then there may be a cure, there may be hope for him to be normal... Give me another test, I will take him tomorrow. But this one... It scares the hell out of me.
IT came back again.
Three times a day, once every week.
FEBRUARY 2010
IT is still here!
We spent all night in the ER one night because he lost too much fluid. He threw up eight times in one day alone!! Not to mention that was the third time that week that he had been sick!
The doctors are NO help! They are stumped. We don't know what IT is. Is it a new symptom? Is it a new condition altogether???
MARCH 2010
At this point we were directed to a neurologist. We had an EEG done. Want to guess??? Yeah, normal.
She thinks that maybe he is having migraines. Okayyyyyyy. How do you know if your child who can A: not speak B: not point and C: not draw you an effing picture is having a migraine?
You don't.
So we tried medication for migraines and nausea medication for well... nausea.
APRIL 2010
IT still lurks beneath the surface. We tried the elimination diet for two months to no avail.
MAY 2010
We try a different migraine medication. It doesn't work either.
IT comes once a week now.
JUNE 2010
Now we have a GI doctor.
He orders an Upper GI series and an abdominal ultrasound to start.
IT only comes once this month.
(We still managed a beach trip)
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