Counting Down...

Days 'til my insurance starts paying for medical costs again... 8.
Days 'til I see my neurologist... 17.
Days 'til I have surgery... 26.

These have been the longest 6 months of my life. And its almost over!

Don't you know the insurance company is going to poop their pants when they see my June totals! Surgery will likely be 6-digits, and my max out of pocket is 7 grand. Eat it and like it Great-West/Cigna!!!!!

Wow!

We're down to five weeks and two days until Bob is gone! (That's 37 days if you're counting like I am). Only four weeks til my neurology appointment, and cardiology is soon after (hey, after my hysterectomy scare, I am making sure I am going to wake up from this one!).

I am still in shock that in our wonderful country, health care is not guaranteed to those who need it. I'm even paying for it, and not getting it. Private health insurance companies are out of control, and we, as Americans need to make sure that it stops.

Here are some crazy thoughts for you:
Your medical tests depend on approval from a non-medical person based solely on their (non-medical school) judgement.
They don't know you, your doctor does, but their opinion determines what you can or can't have done.
In order to get a medical doctor to review a rejection, you have to request it thru the insurance company (and they don't have to do it).
Insurance companies can write anything in their clauses (such as my case - a first year max even though none were pre-existing conditions) and you don't have a damn thing you can do to fight it.
To them, you are a number. It's all about their bottom line. There is no way they can be working for you AND trying to make a profit. It doesn't make sense. They have a HUGE conflict of interest, and you will ALWAYS lose to them making more money. They are a business.

As soon as I am recovered from all my medical drama, I am going to start volunteering for organizations interested in health care (specifically insurance) reform or complete overhaul. It is rediculous that this is what we accept. Did you know that America is one of the only developed countries in the world where health insurance is NOT guaranteed? We lived in England for two years... And we used the health care there. I didn't see a difference. Private health care wants to scare us all into thinking we won't receive care if we turn it over to the government... But of course they do... That's where they make their money!

Anyway... Just thought I'd share some of the rediculous discoveries I've made during my time with Bob. I hope you learned something ;)

Love to all!

Church :-)

We all went today, and we all had a great time - including JT (no joke!). Amazing!

My doctor appointment went okay... She said she believes my 'non-stop' headache is a tension headache... She felt my base of my head (apparently where your muscles come together? I have a horrible memory about some things...) and noted it's severely tight there... My stabby pains in my cheek/jaw/face are neuralgia - the trigeminal nerve. What I hadn't posted on here yet was that my left foot is going numb again like it did a few years back (when MS came up the first time).

From there, she did a few tests, and of course, did my reflex test. Of course, she noted that my reflexes are crazy... And the 'MS' discussion came up again (without me mentioning that it had ever been mentioned before)...

So, she's booking me with a neurologist at Vanderbilt as soon as possible in June (hopefully June 1st). She is recommending a MRI and lumbar puncture to test for MS.

We don't think this is remotely connected to Bob. She felt Bob, and didn't say anything... I told her I don't feel him or even look at him anymore - there's no point... Nothing I can do if he is changing anyway, right? ;-) I prefer to be modestly ignorant.

Anyway... JT was in bed last night, and I asked him for a hug. He then GAVE ME A HUG!!! Then The Hubs came in and handed him his juice, and clear as a bell, JT said 'Tha you'. Mass hysteria in the form of kissing, hugging and yelling 'yay JTmy' ensued (by The Hubs, me and Audrey). Funny the things you take for granted (at least we did with Audrey... We would have never partied like that for a little thank you from her, lol).

Audrey got to go to her friend Ainsley's birthday party at the bowling alley yesterday. I discovered a few things about Audrey... First, she is VERY competitive. Second, she is a pretty good bowler (surprisingly). Sounds like her daddy... She is JUST like The Hubs, actually. Social, funny and LOVES games.

Then there was a tornado in Leiper's Fork. We were driving home, and as we passed under the Natchez Trace, I noticed cars pulled under the overpass... I thought, weirdos... Then I looked up and noticed the beautiful, blue sky in contrast to the horrible, black clouds... That looked like the edge was cut by a razor it was such a perfect line... Yeah, wall cloud. We made it home, and it didn't do anything at our house... One of those crazy moments where you realize it could have gone either way, though.

I do have to share this funny story... We were at the Disney store Friday. This lady was in there with her son, and the Little Mermaid was on the big tv. Her son was fascinated. 'Under the Sea' was blaring, and her son started dancing. She laughs, and goes, 'great song, awful movie'. I looked at the cashier, and we both kind of exchanged this look like, wtf? The cashier (braver than I am) asked her, 'What's so bad about it?'... Get this... She replies, 'Well, it just promotes the woman just give up everything and change everything about herself for the man.' Lest you think it ends there... 'I mean, she had it all great in mermaid-world, and now she's picking up some guy's underwear on land.'

I almost fell over... What?!?!

Plus, anyone who's watched the movie knows Ariel wanted to have legs WAAAAY before Eric!

Long Day

Today was our appointment at Vanderbilt Pediatric Neurology. Let me start out by saying how excited I was to be going to Vanderbilt Children's Hospital - I have heard such wonderful things. He was to have an EEG at 815am, and a meeting with a neurologist at 10am to discuss the blankout stares (which both I and the therapists were worried about absence seizures).
I'm already mad at Vanderbilt. They screwed up, and last Monday sent us home, telling us our appointment was Friday and we missed it. As it turns out, they had scheduled JT 2 appointments with 2 individual ID numbers, and he had one both days... So we were there for our appointment, and they sent us home. After complaining to all the right people, they got us in a week and a day after our original appointment (I kid you not when I say that the first lady I talked to said I'd 'just have to wait' until the appointment they had gone ahead and scheduled last Monday - OCTOBER 3.).
The EEG was awful. Nurse was great, tech was great... But 90 minutes of electrodes sticking out of JT's head, with gauze wrapped around his head/chin like a mummy, plus a sticky heart rate monitor... Was NOT fun. It wouldn't have been fun for any almost-3 year old... Awful. He screamed, I tried to console, he would get distracted, the cycle would repeat.
When it's finally done, they tell us to go to the computer at reception and check in for our next appointment. I did.
After watching the very busy waiting room clear, not once, but twice! - I asked the lady at the desk if we were doing something wrong. 'Oh, you didn't check out of your EEG. Here, I'll do it for you.' I am a computer programmer, so immediately I'm like, how assanine. How can you check into another appointment and it not check you out of the first one?! You can't be in 2 places at once, so it should automatically do that. Besides that, I had done EXACTLY what the people had told me. Ugh.
After ANOTHER 30 minutes (I stood right by the desk as JT screamed, not that the lady cared, eff her), me making her call and check what the heck was going .. fifteen minutes... We go back into the appointment rooms. Our second appointment was supposed to be at 1015, it was now past 1045am. Anyone who knows me knows how much I hate how doctors treat people like their time is more important than mine. If I'm 15 minutes late, I have to reschedule. If the doctor is 15 minutes late, who cares? ME.
At 11, in comes the doctor. Old man, looks grandpa like. He says 'Did you have an EEG done this morning?' Me 'Yes.' (Steam is probably starting to come out of my ears now... Not happy). Him 'I'm sorry to keep you waiting, I haven't seen those results yet. Let me go look at them.'
Ten minutes later. Doctor comes in.
'Tell me about JT.'
I hate these questions. If they're so damn interested, they could invest some time and read the effing chart, or ask me to fill out paperwork. Not one person has asked me to tell them about JT's blank stares so they can write it down.
'Okay. JT has autism.'
'Who diagnosed him?'
This, my friends, is how doctors always react to this statement. Like parents would make something like this up. Stupid doctors.
'Arkansas Children's Hospital... But, uh, it's REALLY obvious. That was just the formal diagnosis.'
'EEG was normal. Why did you get it done again?' (At this point, I am wondering if he is actually listening to what I am saying, or if I could start practicing my french and he would continue having his one sided conversation.)
So, I explain how my therapists and I have witnessed these strange staring episodes, different from the typical autistic kid staring (which is different than NT kid staring, in case you're wondering). Ugh.
'Well, everyone stares you know.'
Duh.
'His EEG was perfect (yes, second time he's said it!). We have no way to know if he's actually having absence seizures since we didn't catch one. But we don't want to medicate something we didn't see.'
'I agree. But is there something I should be watching for with these that would indicate they ARE seizures? Any warning signs I should be...'
(He cuts me off) 'Does he even know you're here? Does he interact with you at all?'
JT, by the way, is hiding under an exam table. He is actually playing peekaboo with Audrey, but the idiot wouldn't know that because he's too busy talking to himself. Asshat.
'Yes, he does. He is actually much better than he was a year ago. He's doing very well.'
The doctor looks at me like he feels sorry for me (there's no mistaking pity in someone's face) and says 'I'm sure he does.' Like I'm a delusional woman who imagines her son is perfect and NT (neurotypical). 'Here's my card if you notice anything else.'
And he walks out, after spending a total of 3 minutes with us. He based an opinion of my son's interaction with others based on a situation where my son was in new surroundings, he had been traumatized all morning by a medical procedure, and the guy had never laid eyes on my son before. AND he had just doubted the freaking diagnosis in the first place!!!!
In this 3 minutes, he has managed to give me no useful information about my son's condition. He first questioned my son's diagnosis, then acted like he was the most severely affected child he has ever seen.
I still don't understand the whole doctors thinking parents make up an autism diagnosis. No parent would wish autism on their worst enemy. It is a freaking disability... Ugh.
So, I am severely disappointed in Vanderbilt. Basically, I am happy his EEG was good, but even in the doctor's words, it proves nothing.
This just adds to my depressing week. I have been so excited about my son's progress... But I began looking at his goals and his levels from five months ago. Language and communication wise, nothing has changed. A therapist told me last week she is afraid of my son. He has now injured two therapists (one over a month ago, one last week). Her injury was because of a blow to the head by a thrown sippy cup. She explained she wasn't afraid of his intent... He wasn't trying to hurt her. But he is impossible to predict (like the plate that bruised my face up about a month ago... You just don't see it coming), and I do agree. Plus I adore the therapist, she was just sharing her input on JT, trying to help (and asking for help herself). It was not meant to be hurtful in any way.
But, how do you react when someone tells you they're afraid of your son?
I am just in a funk. I cried all the way home from Vanderbilt (intermittently cursing at the doctor, how dare he feel sorry for me... I do NOT want his pity). I wish I could fix people's ignorance so they could see my son for who he is and what he offers.
Now it's time to take a deep breath and get on with life. Suck it up, momma. Can't let stupid people (even those with medical degrees) get you down.

My kiddos were both awesome today, especially considering the circumstances. Here are some pics of my little man all hooked up: