Connor will now have to learn that he can’t head butt everything in sight and get off scot free because we are done with the cranial remolding helmet! Well, mostly. He’s still going to wear it at night to prevent the pressure on the back of his head, but that’s really just sort of precautionary. It’s not guaranteed to make a difference. At any rate, Connor had a scan this morning and the changes were very minor from the last scan. Most of the correction took place in the first few weeks and it’s just not enough at this point to justify continuing treatment. While his head isn’t perfect, I think it’s vastly improved. Plus, he has so much hair, you can’t really see anything anyway. The scan diagram actually makes the change look more minimal than I think it actually is. We go back in eight weeks for an exit scan and we will be done! Imagine that, treatment finished before it ever even gets paid for by insurance…
Not sorry to see it go, but I will miss the wide eyed shock of children in public running to their moms and loudly whispering, “What is on that baby’s head?!”
I haven’t checked, but I’m guessing mental healthcare is not well covered by my insurance policy. I assume this as United Healthcare is currently trying to push me over the edge, and clearly they don’t plan to foot the bill.
United Healthcare has denied our appeal of their denial of Connor’s helmet. Apparently, while some devices are covered, this helmet is an orthotic device intended to “change the shape of the body” and is specifically excluded. Soooo, it’s just a silly fashion statement I guess. Chris and I are just so ashamed of the flatness of the back of Connor’s head that…oh, no, wait a minute. His head shape didn’t particularly bother us. His neurologist recommended it, wrote the prescription, and his physical therapist and pediatrician concurred that it was good idea. Well, I’m no doctor, but I’m guessing they would have told me to buy him a hat at Target if they were just trying to create the new Gerber baby.
So here we go. Appeal number two, complete with letters of medical necessity. Bite me, United Healthcare. Thank you for continuing to waste my time. I also spoke highly of you throughout 2012 when Connor’s medical bills hit somewhere close to $400,000. Sure, we hit the out-of-pocket max and that sucked. But somehow, when looking at six-figures, a standard in our twisted healthcare system, $7,000 suddenly feels like pocket change. Even when I’m no longer working.
But now you’ve left me focused on this $3,000 “fashion statement” and our substantial premiums we pay every month.
I found this as part of your Mission Statement on your website. Check it out:
Walk in the shoes of people we serve and those with whom we work.
We believe: In order to achieve the full potential of our enterprise in its purpose, to Help People Live Healthier Lives, we must fully understand and align with their needs and realities.
We value compassion: We will walk in the shoes of people we serve and those with whom we work. We celebrate our role in serving people and society in an area so vitally human as their health. We must be truly compassionate and genuinely understand, feel and identify with their needs.
We behave: We will actively listen to fully understand and genuinely empathize with people’s realities. We will then respond in service and advocacy for each individual, each group or community, and for society as a whole.
And may I add one more part? We will not add stress to the lives of people who have family members with chronic illnesses and health conditions.
You can help with this further by paying our doctors and hospitals in a timely manner. I don’t why it took almost a year to pay our neurologist for some of his services. I don’t know why when Connor first came home from the NICU, I received repeated phone calls from the hospital to call you and find out why you weren’t paying up. I didn’t need that.
My one-year-old son Connor and I were stalked the other day. It happened at Target as I pushed his umbrella stroller through the women’s clothing section. Our stalker darted from clothing rack to clothing rack, unaware that I was watching out of the corner of my eye. I’d estimate that she was about five, and I’m pretty sure the reason she was following us was because she wanted to know what the thing was on Connor’s head. I would have just told her, simply said, “Oh, it’s just a cranial remolding helmet for the plagiocephaly that has occurred in the posterior region of his skull. No biggie.” Okay, that’s not really the way I would say it to a five-year-old, but I felt like I would ruin her fun by acknowledging her presence.
Yes, Connor has a fancy, new, almost $3,000 hat. And that’s minus any bling. You’d think three grand would get you some rhinestones or something. Thus far it has not impeded his favorite activities, which include throwing everything on the floor and turning his bottle upside down and squeezing the nipple to fill his belly button with milk. Or this:
Connor’s physical therapist had brought up the possibility of a helmet many, many months ago when the flattening of his skull was much more extreme. We were able to do a great deal of correction simply by positioning his head, but he was still left with some residual flatness as he neared the age of one, so his neurologist suggested moving forward. I wasn’t thrilled with the idea of a helmet, but accepted it. I made the appointment and took Connor for the fitting. There were pictures and sample helmets around the office. I actually found myself getting a little excited. Having to get the helmet wasn’t ideal, but I couldn’t believe how adorable some of them were. There were tons of designs to choose from, and I narrowed my top two down to one with airplanes and one with soccer balls. Then the orthotist returned and obliterated my adorable vision of Connor with airplanes circling his head. He felt very strongly that the clear plastic helmets were a better choice than the more popular styrofoam lined version that come covered in adorableness. Plastic ones were less likely to chafe the skin, they don’t absorb sweat so they don’t stink, they are easier to clean and you can see any skin irritation that may be occurring. They can also be vented by drilling holes in them. I nodded along in agreement and said things like, “Can’t argue with that.” But in my head I was cursing the stupid practical helmet, that for the same price, comes minus flaming soccer balls. How do you say, “I want the cute one,” after that? But stinky styrofoam? I could wash dishes with the sweat that pours from Connor’s head, so clear plastic it was. That wasn’t the only moment my stomach would drop during the appointment. To be honest, I went in having done no research. I’ve spent the last year reading so much about his genetic condition of tuberous sclerosis complex that I just wasn’t that worried about a helmet. I’d find out the details when I needed to know them. So I was not expecting to hear that he had to wear it 23 hours a day. I also wasn’t excited to hear that while treatment is usually three to six months, since Connor didn’t get his until he was a year old, his treatment would likely be closer to six months than three.
Those were my only negative moments though. Do I love the helmet? Not so much. I hate that it makes his head sweat so much that the effects of a bath are destroyed ten minutes after I put it back on his head. I hate that my adorable child has to wear it 23 hours a day. Oh, he’s still adorable in it mind you, but no parent wants anything to prevent onlookers from having the full experience of perfection that is their child.
I think if the last year had been “normal,” this helmet would really bother me. They’ve become much more common since the “Back to Sleep” campaign to combat SIDS, since putting babies on their backs has caused a huge increase in plagiocephaly (which is far preferable to SIDS, obviously). Nonetheless, I think I’d take it off him every time he left the house or someone came over. But the last year has not been normal. Connor was born with tuberous sclerosis complex, which causes benign tumors to grow in the organs. Currently, only his brain is affected, but we’ve dealt with five weeks in the NICU, seizures, brain surgery, daily administration of several medications, multiple EEGs, MRIs, infantile spasms, gross motor delay and speech delay. He has physical therapy, speech therapy and music therapy. I could care less about a stupid helmet.
I want a life where I care about the helmet. I also want a life where the opthamologist assures me that the occasional crossing of his one eye is not a big deal, but if it gets worse, it can be corrected with glasses, and then I freak out about how I don’t want him to have glasses. But I don’t care about the glasses either. I don’t want to be the mom that impresses the doctor by taking glasses (and helmets) in stride because after everything else, they just don’t matter. “A lot of parents ask if their kids can just have eye surgery instead,” the assistant told me. “They’d rather their kid have surgery than have to wear glasses. I guess TSC really gives you perspective.”
Perspective. I’m drowning in it, whether I like it or not. And it only took me 31 years to find it.
The weirdest thing happened when I called Boston Children’s Hospital to schedule Connor’s MRI for August when we will be up there for the TSC study again. An actual person answered the phone, and he immediately scheduled the test.
It was surreal. I dialed. Someone answered. Things were accomplished.
Meanwhile, I’m still waiting for Children’s Healthcare of Atlanta at Scottish Rite to return a message I left with the medical records department 2.5 weeks ago. So my list of CHOA departments that don’t return phone calls is now:
1. Scottish Rite EEG (note: call was returned after I recruited neuro office to get involved)
2. Emory-CHOA billing (note: call was returned over a month later once I wrote a letter of complaint and sent a copy to every single board member including the CEO)
3. Scottish Rite Medical Records (note: pending)
The reason I was calling them is that I recently submitted my application for Katie Beckett Medicaid, which, if approved, will help pick up costs of Connor’s medical care not covered by insurance. I’ve submitted 8 metric tons of paperwork, only (I hope) minus his surgery discharge papers. Those must have been accidentally thrown away. I don’t know if the board is going to want proof from the hospital (even though the neurology notes make plenty of reference to it, but it’s government after all) so as a precaution, I sent in a medical records request. None of the check off boxes described what I needed so I tried to explain what I was looking for. They don’t provide the records until they figure out what printing it will cost and then they send you a bill. Apparently the department thinks I need the whole 200 something pages and they want to charge me over $100 for it. So I called to clarify that all I need is a couple pages pertaining to the surgery and I’m not paying $100 for it. The discharge papers were like six pages for God’s sakes. That was 2.5 weeks ago. I hate CHOA and their unprofessional business ethic.
A couple companies that deserve a positive shout out so that I can offer contrast: Level 4 prosthetics. Connor recently got a cranial remolding helmet (a more detailed blog to come on that). At his initial screening, it appeared to be covered and we paid the uncovered 20 percent portion. Fast forward a few weeks and I arrive home today from one of Connor’s helmet follow-up appointments to find a denial from United Healthcare. Say what now? You want us to pay for this $3,000 helmet? So I freak and contact all his doctors and physical therapist to get proof of necessity, and then I call Level 4, who I should have called first. They’re already on the appeal for me. Good stuff. Thank you! And United Healthcare, my child is adorable in his helmet, but I assure you it’s not just a fun accessory.
The other company is AquaTots of Kennesaw. I became nervous that I would soon be doing time for homicide due to parents who think they get to save the limited dressing rooms for their swimmers, so I expressed my dissatisfaction. They were very quick to respond and remedy the situation. And now the mom who thinks it’s okay to let her children leave their cars in front of entrances where other customers can fall and hurt themselves walks the earth safely again (until she once again almost simultaneously paralyzes me and makes me change my kid on the floor, then all bets are off).
So these are my days. Doing Connor stuff, trying to get into some freelance writing and watching Roseanne reruns. I feel like I should miss working more, but I don’t. Probably because by the time I left, my teaching to do list had changed so drastically.
Sample To Do List 2005
1. Lesson plans for next week
2. Copy 2nd grade newsletter
3. pull center materials
4. choose new read aloud novel
5. try not to turn beet red, break out in hives and pass out from anxiety when undergoing mandatory teaching observations
Sample To Do List 2012
1. Some random excel sheet with random meaningless data to be submitted to someone who will never even read it, assigned 5 minutes ago, due now
2. see #1
3. see #2
4. Collect elevendy bajillion weeks worth of data so a student can receive services, but probably not
5. Attend a committee meeting
6. see #5
7. see #6
8. see #7
9. figure out what you’re teaching tomorrow. Somebody wants another excel sheet with data due in 5 minutes
10. try not to turn beet red, break out in hives and pass out from anxiety because it’s a work day
And all for less pay every year. Hey, I get it. There’s no money to be had. Just be ready to see more of this stuff on school property if you don’t want to pay people in the education profession:
I won’t say where I took this recent photo. I might need them to hire me one day.
What I do miss is how hilarious some of those kids can be. I received texts from a former co-worker the other day. She teaches students now that I taught a couple years ago in first grade. They told her that my “shoes haunted them.” My heels were like two feet tall, and they always watched out for me because they were afraid I would topple over. If I’d known I would have based my compare/contrast lessons on heels vs. wedges.
I also decided to start pursuing my original plan to make some of Connor’s food myself. I have the little baby blender/steamer combo, but I’ve only used it for pretty basic stuff. I decided to finally make one of the recipes from the little booklet that came with it. Hey, why not? Connor eats EVERYTHING. I mean EVERYTHING. This was the result:
I used to be disgusted by moms drinking and eating after their kids, but the other day I found myself fighting the urge not to eat half his spaghetti and meat sauce. Then I let him drink out of my water bottle. But I also realized he has 50 percent of my DNA. That means it’s half my saliva. So that’s okay, right? Is that what these moms have known all along that I didn’t understand? Or should I just go out and buy some mom jeans now?
Despite the failure of my foray into baby chefery, I am still happy because winter is finally rolling out and warm days have come. I leave you with photos of my little Gordon Ramsay in a good mood enjoying the weather.
Please click the Top Mommy Blogs link to the right! It really does make a difference!
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.