On top of this, we have considerable mommy guilt about Hallie still being on the bottle and still falling asleep with it in her mouth. The dental attending whom we saw at CHOP/Penn last winter was unforgiving about this, to say the least, and put the blame squarely on our shoulders. In no uncertain terms, she accused us of being irresponsible, negligent, and even abusive parents who had done their daughter a serious disservice by not putting a G-tube into her tummy instead. When I plead my case, it fell on deaf ears. Thankfully, the dentist who actually performed Hallie's dental surgery (a thorough cleaning, x-rays, and an extraction) last February was far more understanding of our location between a rock and a hard place and wasn't into moralizing or reprimanding us. But still the mommy guilt lingers on: even if we know that Hallie can grow, or at least hold her own weight wise, by still consuming most of her nutrients from a bottle and that she went on a full food strike when we tried to remove it from her this past winter, and even if we know that we're sort of given a pass by virtue of the disabilities that we wish she did not have, it doesn't help to walk around thinking that we are harming Hallie, or at least her teeth, by not removing the offending bottle.
In the intervening months between last February and now, we've managed to get Hallie used to--and even fond of--brushing her teeth. At first, we just let her chew on the brush and put a bit of fluoride toothpaste on it for her. As it turns out, she much prefers our cinnamon flavored Crest to the bubble gum kid's variety emblazoned with the likeness of Dora the Explorer or Sponge Bob Squarepants. We then started to brush for her, and, over time, she began to open her mouth wider and wider for me and let me do an increasingly thorough job. She's now at the point where she will sort of brush her own teeth (though my efforts are more effective) and will ask to brush her teeth multiple times a day. She's even gotten good at spitting water out after she's done (indeed, this activity is one she finds extremely appealing). I haven't managed to get her used to swishing around fluoride rinse but that's something we'll continue to work on with Hallie. So, at least from the perspective of oral hygiene, we knew that Hallie's mouth is in a better place now than it was a year ago. Still, the nagging feeling that we're ruining her teeth with the bottle lingered on.
As it turns out, we were right and the Wicked Witch Dentist of West Philadelphia was very wrong: it wasn't the bottle that was eroding Hallie's enamel but the chronic regurgitation. Now that she vomits infrequently, she's doing a whole lot less damage to her teeth. (We're now at 239 days without vomit, and counting, for 2009). As it turns out, her mouth is in great shape and there has been no further discernible damage to her teeth this year.
But I'm getting a bit ahead of myself here.
To prepare Hallie for the visit to the dentist, we began by telling her social stories. I let her know that a dentist was going to take mirror, put it in Hallie's mouth, and use a big shiny light to see her teeth. Hallie and I looked at her teeth in the mirror and practiced 'saying Ah!' and opening wide. I told her that she would have to lie down on a very big chair and that the dentist would look and then brush her teeth for her and that it would not be fun but that it also would not hurt. We went over this scenario for a few days before the big event.
When we got into the dental office, Hallie was very cooperative, at least at first. The dental student showed her the mirror and allowed Hallie to play with it, look in it, and place it in her own mouth.
Matters became a bit dicier when the dentist actually had to reach in and have her own look around inside Hallie's mouth. This elicited some tears, but not too many:
Hallie did work hard at "being brave" and held my hand the entire time.
Matters got a bit worse when the dentist brushed her teeth for her, but not too bad. Since we are using a regular toothbrush at home, the dentist decided to use a regular one to do the cleaning, but showed her the 'tickle brush' (the electric version typically used for cleaning) and told her we would be using this one next time. We'll pick up a battery operated toothbrush to use at home in anticipation of this next visit, I think.
The only time things got really dicey was when they had to paint Hallie's teeth with fluoride for her treatment. Hallie's not a big fan of bubble gum flavored stuff, and, besides, the fluoride no doubt tasted more medicinal than bubble gum would have, so there was some gagging but no heaving during this procedure and we escaped the office in the same clothing in which we arrived and without leaving a pool of vomit in our wake. That was a pretty major victory, as far as I am concerned.
Unfortunately, upon leaving the practice area and going to check out, I was delivered the news that Hallie's insurance through Medical Assistance (Medicaid) had been canceled. Having to pay out of pocket and knowing that I was about to face a huge battle for reinstatement left me with a bad taste in my mouth.
(Note: it's not like we don't have private dental insurance for Hallie; in fact, we have her double insured for dentistry under our own policies. It's just that the CHOP Dental Clinic, which serves only those who are Special Needs or poor, only accepts Medical Assistance. And while there are pediatric dentists who do take our insurance, we were pretty badly turned off by the biggest Center City practice and unable to locate another private practice that was good at treating special needs kids locally).
By the time we got back in the car to go home, I had confirmed with the HMO that administers our Medical Assistance plan for Hallie that her insurance had, indeed, been terminated, effective October 31, 2009. This meant that bills for all the therapies that she had received during the week (Floortime/DIR; OT; PT; Speech; Special Instruction; and her Personal Care Assistant) were going to go unpaid. Even more significantly, it meant that all of these therapies were in jeopardy and might require suspension while I worked out this kink in the system. The cost of these therapies is probably in the area of a thousand dollars a week. I can't say for sure how much the total is because we never see bills; up until this point, they would just get paid. The only thing we ever needed to deal with was getting the proper referrals and prescriptions and calling to make sure that Medicaid, as our secondary insurance for Hallie, got billed for co-pays. But there is no doubt that the therapies are expensive and that having to cover them all while we worked out this problem would have been impossible for us to do; Hallie's therapy costs exceed our mortgage payment by about 200% and juggling both would have involved bankrupting ourselves and maxing out our credit cards.
So I needed to step into high gear and solve this crisis. Which is precisely what I did the second I got home. First, I went to this website put together by the Pennsylvania Health Law Project to bone up on the procedures for certifying that Hallie falls under PA Loophole 95, which allows disabled children to be covered by Medicaid in the state of Pennsylvania regardless of parental income. Then I got on the phone with my contact over at the Disability Rights Network of Pennsylvania to explain what had happened and to make sure that I was handling matters correctly. Both agreed that Hallie should not have been dropped from the Medicaid rosters in Pennsylvania; instead, I was supposed to have been provided with a written request for a review of her status to determine whether she was disabled and prior written notice that afforded me a ten day period to appeal any effort to disenroll her from Medicaid. We never received any of those things. Calling the local Medicaid office proved useless since it was impossible to get a live caseworker on the phone, let alone a person who knew anything about the provisions governing disabled children.
Thus, I spent the better part of last Thursday evening assembling all the documentation that we might need to re-apply for Medicaid for Hallie and filling out the forms at the Department of Public Welfare's website. And on Friday morning, I high tailed it down to the local DPW office to submit all of this stuff in person. Fortunately, we were in the midst of a transit strike in Philadelphia. While this made my life more miserable since it entailed a long walk back into Center City from the DPW office (happily, Sharon dropped me off there on the way to work), it meant that the office was less crowded than it typically is and I was able to get in and out of there in under four hours. And it is a good thing I went in person; not only did it mean not having to risk losing original copies of Hallie's birth certificate and Social Security card, but it also meant that I didn't make needless errors on the extraordinarily confusing (even for me) paperwork that would have resulted in the whole thing being bounced back to us for completion.
So I got the paperwork in, but then the question became: how in the world do I fast track it? That's where my contacts over at the Disability Rights Network and Health Law Project really came in handy. I felt like it was a pretty major victory that we managed to get Hallie reinstated for Medicaid in two full working days: by early Tuesday morning, her case was provisionally approved and her bills were being paid again. It was kind of a no-brainer: Pennsylvania is a very liberal state when it comes to insuring children generally and covering the medical costs of those with disabilities in particular. Both Hallie's global developmental delays and her diagnosis of Autism Spectrum Disorder, for which we have corroborating paperwork, easily qualifies her for coverage. Sadly, this is not the case in many places in this country. But, what really helps is that I am very familiar with the law and with where one must go to find help in making sure that it is implemented correctly. Trying to get this done without intercessors who knew how to contact the proper people within DPW and actually had sufficient clout to get them on the phone, make them pull up Hallie's records and review them on the spot, and then authorize a status change, retroactive to October 31st, would have been, as Hallie likes to put it, "very too hard."
So, all in all, it was a minor hassle and I still have to figure out how to get our out-of-pocket dental expenses reimbursed, but all's well that ends well. And, most importantly, Hallie's teeth are fine and we don't have to put her under for another dental surgery any time soon. But I definitely could have done without the drama and the wasted time and the crisis mode into which this little event thrust us.