Just ONE of the Faces of the Health Care Crisis

For a limited time, I'm using her real name.

Some of you may know that my daughter, Virginia Grace, is losing her health insurance, most likely on Tuesday. We have been through so many hoops with TN Care, SSI, TN Cover Kids, and tried everything we know to do to help insure that she's insured.

A little background on Virginia Grace: she was born with a cranio-facial disorder called Pierre Robin sequence, and has been diagnosed since then with many many disorders that have required and will require more than a dozen surgeries, a tracheostomy, a gastronomy tube, through which she gets 100% of her nutrition (medical nutrition), speech therapy, occupational therapy, and so on. It was discovered last week that she also has a very very rare genetic mutation, one that we (and her geneticists) are just beginning to learn about. She will require surgery within the next few months to repair a fistula in her neck. She is one big pre-existing condition. (To read more of our story, click here.)

We are losing her health coverage because the state of Tennessee recently won a 20+ year court battle which allows them to push Medicaid-eligible people off of the TN Care rolls. Because we adopted Virginia Grace (instead of permanently leaving her in the foster care system, a situation which would have had the state paying at least double what they're paying now), she no longer receives an SSI check, though she is medically qualified as disabled. Because she does not receive an SSI check, Tennessee is no longer required to cover her.

We have appealed both the TN Care and the SSI, and are waiting for the appeals to go through. The TN Care appeal is on Tuesday, though the SSI determination may be months coming; the former is dependent upon the latter. Between the time that TN Care terminates her insurance (she was actually terminated on February 25, after only two weeks notice), and SSI does or does not deny her SSI, we are in a lurch. Because we elected to keep her coverage during the appeal process (with the caveat that we will have to pay back all of the many expenses accrued in the interim), we were denied by Cover Kids, the organization which is supposed to be the next step for her (with significantly decreased coverage and SIGNIFICANTLY increased out of pocket). Our private insurance would cost us almost $1000/month to add her. We simply cannot afford that.

Why am I telling you all this? I know that many of my friends come from disparate political positions, and I know that there are no easy answers to this problem, for anyone affected. But what I do believe is that this isn't just about "pushing through tort reform," and "allowing businesses to reward workers who have a healthy lifestyle," or "being able to purchase health insurance across state lines." I also believe that small businesses cannot bear the burden of the costs. I frankly don't know what the answer is. But what I'm asking, or hoping, is that people talk about it, think about it, and when people talk about it they think of Virginia Grace.

Please feel free to share our story . . . because we're not the only ones.

Click HERE to tell YOUR congressperson who you're inspired by.

It's Come to This

I really have been writing. Just not here. I'm going to finish this G-D thesis THIS G-D semester if it kills me. And, in between my memoiry angst, I'm writing some stuff for Memphis Parent Magazine. So, in lieu of an actual post today, I thought (inspired by Elizabeth Alley) that I'd make a list of the things that I would have written about had I been writing here.

1. VeeGee started school in August. Her pre-k teacher is awesome (and strict!). I can't believe she's there every day. Crrrazy.
2. I've, as of today, lost 40 pounds (since April). And yet, I don't look very different when I look in the mirror.
3. I went to my second bachelorette party with the same group of girls at the first, about ten years ago. It was fun, but the strippers were icky. I heard tell they put on "crotch cologne."
4. VeeGee has spent the night out twice, once at the great grandparents, and once at the grandparents. She didn't miss us at all.
5. She is still not eating, but she's talking up a storm.
6. We're going through, perhaps, the very worst financial crisis of our marriage. And yet, we're relatively happy. I don't know whether it's denial or just a deep-seated reliance on each other. Probably both.
7. I am feeling really really sad and worried and afraid that I'll never land a job.
8. I'm afraid that our financial situation is going to force us to stay here when we should be moving on.
9. I am both sad and happy to hear that VeeGee is most likely not going to be allowed to stay in the special needs program.
and, 10. I've seen a hummingbird almost every day that I've sat at my desk writing. They're extraordinary. In the future, I will call this the Summer of Hummingbirds.

Not so fast . . .

So, just when I thought we were not going to be putting VeeGee under general anesthesia for a while, her GI had decided that he really needs to do a suction biopsy to rule out Hirchsprung's disease. Of course I'm on it like a fly as soon as we get home and, of course it describes everything about VeeGee (chronic FTT, chronic constipation/diarrhea, weight loss . . . .). He also wants to do a scope of her esophagus to see what kind of damage is/has been done with the chronic vomiting (now just retching, of course, but she's getting more and more ick out as time passes).

I am not going to believe or really entertain this dx until/if it's made. I'm betting (hoping) that the issues are more related to the combination of her being the age she is with the temperament that she has plus low tone. But it's still just sobering to know that there are still these hurdles. It's never over. I so frequently think, "We're getting to the end of this. After this surgery, she'll just be a 'normal' kid." I've actually even felt guilty lately when I read about some of my friends who have kids with for real life threatening issues, like, it's not that bad. The tube's no big deal. She's breathing now. Not eating, but . . .

And then I'm reminded that her issues are systemic, permanent and that we may keep discovering facets of them into adulthood.

This is my little thumbs-up girl,
right after surgery this last time.
She's so AMAZING!!!!

Reluctant Poster

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I've been reluctant to post since we got in here because it's been such a roller coaster and I kind of go from feeling whiny to giddy within hours. I really thought we were going home today, had my bags packed and everything. And then the doctor tells me it's going to be at the earliest Thursday before we'll go. I'm so sad, and at the same time kind of relieved. I had been worrying that she wasn't doing so great, but I am sometimes a glass half full kind of person (as much as I try not to be), and so I had pretty much decided that I was blowing things out of proportion.

As of tonight, I'm really glad we're here. She's developed a fever higher than she's ever run and she's been incredibly lethargic all day long. When she's been awake, she's mostly been laying down, and when she's sat up at all it's only been for a short time, like half an hour. I'm trying really hard not to start freaking out. I hear from so many moms whose kids have gone through these things. It's just part of the process. But it's really a challenge to balance my intellectual understanding of that process against the fever listlessness of my little girl. I hate seeing her this way. So cliche, I know.

In the midst of all this I have friends whose kids are going through things far more life threatening, or at least more definitely and imminently life threatening. And they're so generous with their support of VeeGee and me. Truly amazing.

Being in this room, which, fortunately is pretty opulent by hospital standards, is incredibly surreal. I mean, I've heard that it's hot outside, that rain is coming, and yet I haven't been out there. That's so very strange to me.

And these people, the nurses and other staff, come and go and have stuff going on outside of this place that's everything, my world, right now. I guess that seems rather trite to be thinking about, but all of these nurses, or most anyway, are these young cute vivacious girls, mostly, probably more than a decade younger than me. K and I were talking about how weird that is, that these girls are caring for our daughter are about the age we were when we first started dating. And god bless america, I wouldn't have trusted either one of us with a kid's life, like really her life!, for a million dollars. 'Course in our collective hubris (which was amusingly and embarrassingly HUGE) we probably would take umbrage at any suggestion that we were ill fitted to do anything.

And on that lovely reflective note . . . good night.

She's Out with A Pout!!!

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She's out of surgery and Dr. Kelly believes it was a great success. We had some concerns when his intern didn't know anything about the combo p-flap/sphincteroplasty, and didn't get to talk to Dr. Kelly until afterward. But he did do the combination. So, basically, they've made a purse string in her throat along with taking some tissue from the very back and making what's kind of like a curtain. These two things should help her regulate air and improve speech.

Right now, she's pretty doggone angry, and fighting the IV and pulse-ox tape pretty hard. Each arm has two no-nos (kind of like splints to make her unable to move her arms) with socks on top of those because she's such a Houdini. She's already wiggled her way out of all of that twice, so we're taking turns keeping our hands on her to prevent her trying again.

Her mouth is pretty bloody and swollen, and there's a little bit of bleeding coming from her nose, but those were both to be expected.

We're in PCCU right now and will be here until, at least, 9am. We hope that we'll be able to get one of the family sleeping rooms (with shower and private bath) that they give out on a first come first serve basis (based, in part, on how far away you're from - so we're pretty likely to get one). That way we can take turns resting throughout the night.

Thanks so much to everyone who's sent love and prayers and good wishes. We really appreciate it!!!

Much love,
VeeGeesMommy, K, & VeeGee

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T-Minus 44 Hours

In forty eight hours, VeeGee will likely be in the recovery room waking up from surgery. I had to take her to the doctor this morning because she's been hoarse the past two days and I was worried that there could be the beginnings of an infection that would knock her out of being able to have this surgery. And we've waited so long for this, agonizing about whether or not it is the right decision for her, agonizing about how the recovery is going to be different this time, since she's so much older and more mobile than she's been in previous surgeries. I'm dreading the time in the hospital primarily because I'm worried about how we'll keep her still enough to get better. She's so wonderfully active now.

The surgery, which is going to be a combination of two different surgeries, a pharyngeal flap and a velopharyngeal sphincteroplasty, is supposed to help her be able to have more productive speech by regulating the flow of air. I've read many accounts of how wonderful this surgery is and what incredible gains children have made after having it. And then I've heard the opposite. It's really hard to know how to choose these things. I mean, darnit, I'm not a doctor, Captain, I'm a writer!

Basically, our approach has been to hit at the problem from every angle available to us: oral motor, regular speech, occupational (feeding) therapy (which we also think has helped her speech), nutritional therapy (fish oil!!!!!), and surgery. I'm sure that at some point we'll have to start picking and choosing, or that we could get to a point of diminishing returns. But we're not there yet, and she's really thriving and her speech improvements pretty much stun everyone every time they see her (not just therapists), even from week to week.

I think that we special needs moms, like other moms, but more so, are kind of like general contractors. We have to kind of know what's going on in a global sense and then find people to execute different parts of the "project" as appropriate to each one's particular expertise. That's one of the problems (and advantages) with medical specialization (which is relatively new). Each doctor has his/her own little special interest, their own little (frequently very narrow) territory, largely to the exclusion of other possibilities. This puts us in a position of having to make decisions that sometimes pit specialists against each other. I just have to hope that it becomes an iron sharpening iron situation and that the one who can make the best, most accessible argument, is the right one.

Who knows what our path would have looked like if VeeGee had been living with us since birth. It's so hard to know those things, and it's almost too painful to think about them. There's a big part of me that looks at other children with the same disability profiles and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. My gut actually tells me that both the cleft and the severity of the retracted jaw did, in fact, make those things necessary (though I think I would have certainly worked harder than her birthmom did to facilitate bfing because of the oral motor benefits that I'm sure, at the minimum, it provides).

I guess I say that to say that there are SO MANY ways to go about a treatment plan. And that, even if we make "wrong" decisions, like the ones that we had to pick up after, a kid can still thrive in the end. In most ways, you'd never know that VeeGee was/is as far behind as she was/is (until you lift her shirt and see that danged button). I know it's easy, and hard not to, agonize over every single decision. But I'm having to kind of give myself a break and let instincts do some of the work. Do I trust her surgeon? Yes. I trust him mostly because he's willing to sit down with me and treat me like an intelligent person. I don't know. Is that a good enough reason to go forward with this surgery? I hope it is. I trust it is. That's the best I can do.

Okay, so we'll call them "InchStones"

VeeGee licked pudding off of her fingers (three weeks in a row!!!!!!!) at feeding therapy without coercion OR gagging!!!!!!!!!!!!!!!!!!!!!!! Yesterday in speech therapy they were playing with play-doh and her therapist cut out a "cookie" which VeeGee, with a bit of doubt in her eyes, picked up and licked (I guess she's starting to get the hang of the routine!). However, she was none pleased with the taste and said, "Play doh tastes yucky!" (Also an inchstone!!!!!!!) Yes, VeeGee, play-doh is yucky tasting. But YOU ROCK!!!!!!!!!!

Social Rejection

In some ways it was easier when VeeGee had her trach, because there was a clear outward "signal" that something was different. Now, without it and because of the jaw distraction, only her size signals something different (until someone speaks to her, of course). What we were noticing tonight is how she just doesn't try to communicate with her peers verbally. Her only words are "uh huh" AND "uh uh."

So someone asked, “Can you find some other families with special needs children for your child to make friends with?” Well, you know, that can be problematic for several reasons. One of the main issues, for us, is that we want her to be able to mimic the speech of typical kids as opposed to other kids who, like her, have a difficult time speaking. Also, well, I'd like her to be able to live in the "real world" and not a little enclave of SN people. Besides, the spectrum of special needs is as broad as the spectrum of typical people - so it's not like you can "go shopping" for someone who is just like your kid.

I know that wasn't mean to be offensive, but, I have to say, it kind of was.

For the record, VeeGee has always been in a school with 50-50 kids with SN and "typical" kids. I am most certainly NOT living in any sort of fantasy world about that (well, beyond the occasional, "Wow, this is our reality" kind of thing that, I'm guessing, is something at least SOME of us feel at times).

One thing that I think informs my feelings on this subject is the fact that I have a 16 year old brother who has Down Syndrome and I have seen him in both sorts of situations: inclusive and not. He spent his first thirteen years in schools that were completely special needs oriented - though my parents worked very hard to have him involved in extra-curricular activities where he could also be around "typical" kids. Now he is in a school that is primarily a typical school, and he has a few peers who have special needs.

What I have seen, firsthand, is the way that he has really thrived in both environments, though, now, as he grows older, it is entirely appropriate for his world to begin to expand to include all types of people because - fact of the matter: he will have to live in the "real world" at some point (hopefully!).

As to the quality of relationships that he experiences, and the concern about their potential superficiality, I think, truly, that he experiences most relationships just as they are. He most definitely has real reciprocal relationships with typical kids. They are no more "superficial" than the relationships most people have with each other. Obviously, they are different than the relationship two typical teenaged boys would have with each other, but I don't think they are qualitatively less mutual or rewarding.

I am not looking for my daughter's friends to be her therapists. I am, like any mother, hoping that she will be able to learn good things from her friends. All mothers, I think, try to facilitate relationships for their children which they think can benefit them. Why is it wrong for me to want my dd to be around children who are modeling a strength/skill which she lacks? That doesn't put any onus or burden on her friends to be anything other than exactly who they are. F what it's worth, VeeGee's two "best friends" (insofar as kids her age have "best friends") are typical girls who, somehow, understand her attempts at language. They play and "talk" to each other.

I don't disagree that it is/will be important for her to be around and have the support of other children with disabilities. She gets plenty of that even now through her daily therapies (several of which involve group play) and through playdates and whatnot. I'm not trying to pretend that she's not disabled - that would be virtually impossible - I just want her to have access to as many types of friends as she can have - black, white, special needs, disabled, typical.

We were at a party the other day with some of VeeGee's typical friends. I'm noticing the deepening chasm between her ability to communicate and theirs. It's making her more and more awkward. One on one she does really well with typical kids, but in this particular situation (which was uncommonly frenetic - a birthday party in a very small house, with no outside access) she just defaulted to "playing monster/tiger" and chasing the kiddos around. It was cute at first, but then dh and I both realized that it was continuing because VeeGee just didn't have any other way to interact with the other girls there. Cognitively, she functions on their level, which is what makes this harder, I think. So, we're wondering, "does she know that they're ahead of her verbally? How might that make her feel?"

Cleft Palate Fissures & Vandy Visit

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Well, I'm excited and nervous and totally fried. VeeGee and I have been at Vandy for the past two days. We have seen six doctors (craniofacial surgeon, allergist, GI, pulmonologist, and the GI surgeon), had allergy bloodwork (bless her heart), X-Rays, and, ahem, an enema. I have NEVER seen ANYONE suffer like my baby girl suffered after the enema (saline). She screamed for forty five minutes straight, forehead flat against the wall, tiny fingers clenched, teeth clenched, And then she crawled into my lap and pooped 9 days worth of poop all over herself, and me. Pretty crazy. And THEN, we had to go have four vials of blood drawn. Naked. Well , her, not me.

So, the craniofacial surgeon, god bless him, scheduled cleft palate repair for the 30th OF THIS MONTH!!!!!!!!!!!!!!!!!!! "Our Other Doc," Dr. W*#@*&^, was going to wait until she was AT LEAST four. Meanwhile, she continues to be unable to eat, to speak (and be understood by anyone but me), to have repeated sinus infections ear infections, blah, blah, blah.

Anyway, Other Doc fired, Vandy dude rocks.

There are concerns, though, about the repair. It will be the second attempt. The first attempt was when she was 6 months or so (before she came to live with us) and there were serious fissures (like so serious that every doctor who has looked at it as recoiled in shock, that is, every doc except Dr. W*#@*&^, who, apparently has NEVER ACTUALLY LOOKED). So the primary concern is that there might not be enough tissue to make the repair without further fissure(s). The other options, as I understand them, are to pull tissue from the cheek and/or a pharyngeal flap. This doc does not think a tongue flap is a choice for VeeGee b/c she's too young to tolerate it. Same reason not to do an obturator.

GD+SN=?????????

I think a lot about how special needs parenting forces us to give up so many of my "crunchy" ideals. And I'm wondering, now, if gentle discipline is one of those things we have to give up.

VeeGee has GERD and has thrown up pretty much constantly since she was born until she had a nissen fundo in January. Thankfully that ended the vomiting. And, for the first time, we can see inside of her mouth without her completely clenching her teeth. I know it might seem ridiculous, but we've just never been able to fight her hard enough to be able to see inside her mouth without her throwing up. But now we can.

Anyhow, we've discovered that her teeth are almost black - likely from the acid and the "neglect" and the massive amounts of antibiotics. SO, we've decided to start brushing them. And you'd think we were torturing her.

I'm used to torturing her, to her screaming in pain or agony or fury. I HAVE to do horrible things like give her breathing treatments, change her trach (until last month), clean/rotate her mickey button, oh, and change her diaper. I have to hold her down, probably hurting her, when nurses change her IVs, take her blood pressure, her temperature, her ears.

And now I'm wondering just what she understands. How much am I supposed to hold her accountable (I don't even know if that's the right word) for her occasional hitting, throwing and other 'misbehaviors' - mostly mild, really? Her therapists complain about compliance, and I just don't know how much more I can push her.

How do you establish boundaries, 'rules' or whatever when you're not completely sure that your little one understands? How do you cope with people who think you spoil your child because they aren't always 'following instructions' or whatever?

You Know You're The Parent of a Kiddo With Special Needs

when . . .

You're just so thrilled to see poop at all that you don't mind cleaning it up!

Or you've quit worrying about telling people what her trach does and started just telling them it's a necklace. . . . And you don't hesitate grabbing somebody else's kid who decides they'd like to take that necklace.

Or you answer that stranger's pitying, "Oh is she okay?" question with, "Yep, just fine, and you?"

Or you've quit worrying about the vomit streaks on your clothing "as long as it doesn't smell too bad."

Nissen & Gagging????!!!!

I am wondering if it is normal for her to gag after the nissen a bit and if that's okay. I know that was one of the initial problems post surgery that indicated she wasn't emptying. Should I be worried that, when I just gave her 5ml of multivitamin and 2ml of her pain med, she gagged for about a minute? Only a dribble of "vomit" came out. Will she ever be able to vomit? I know I should have asked these questions of the surgeon, so please don't flame me. They just literally pushed us out the door at discharge, so I was pretty discombobulated.

Also, we are just, for the first time, beginning bolus feeds, but she seems to be tolerating me pushing the formula A LOT faster than the doctor indicated. In fact, I don't think she could sit still for 30 minutes while I bolused her. Is there a chance that I'm messing her up by going too fast

Uncertainty

Uncertainty really is one of the hardest parts of parenting a special needs kiddo. K I sometimes say it's like trying to stand in an ocean with crashing waves all around you - in the dark. You never know what's going to hit next. That said, we find that, for one thing, having a sense of humor about it all is a lifesaver. Yeah, this is your life, and, yeah, sometimes it sucks. But, really, it can all be pretty funny too - if you allow yourself to relax into it.

Restraint?

A is now 30 months and is in a stage where she is kicking us during diaper changes, and when we have to do things to care for her special needs (she has a feeding tube and doesn't want anyone to touch it - though we, obviously, have to). I have been trying the "be gentle with your feet" tactic and have seen some response, but, at a certain point, I just find myself having to restrain her just to get the diaper on.

I guess my question is if restraint qualifies as gentle discipline. I know it can't feel good to her, and I'm terribly concerned about it hurting her, but I just don't know what else to do. I try to keep the restraint as brief as possible and I absolutely don't express any anger or anything - it's just a means to an end.

The other question is whether or not it's appropriate to *force* her to walk with me to do this or that (like clean up or coming out of a room she's not supposed to be in or that sort of thing). I try very hard to hold her in such a way that she can't dislocate her shoulder or anything dangerous while I (almost) drag her to whatever place or away from whatever place. I know I could just pick her up to remove her, which is what I do in emergency. But this is for when I'm trying to teach her to move away from (or toward) something that she doesn't want to do.

Too Much Going On?

Oh, yeah. I am right there. It seems like there's just too much. But someone reminded me the other day that therapists know we can't do it all, they're human too, they just have to lay it all out there because that's their job. Our job is to sort through all that stuff and figure out what's going to work best for our child and for our families.

A's therapists keep telling me we need more structured activities (I've posted, in exhaustion, about this before). What I've finally come to realize is that I'm only going to be able to provide a certain amount of structure. Aside from that, she has to be able to LIVE for goodness sakes. And unstructured time is what is most precious, and creative and educational and therapeutic, in my house. I think (I hope) she's learning all of those things that they want her to learn in a structured way by interacting with her daddy and me in the garden; walking on uneven ground; touching sticky, wet, gritty stuff; barking at the dogs; tasting her pool water (ick, I know - but she's SWALLOWING, something we couldn't get her to do in a "structured" environment); etc. If she had siblings, there would probably be even more of that (but that's not happening).

All that to say, I have to do what my heart tells me. I know what's best for my kiddo, better, even, than therapists. This I know for sure.

She's Tall! - Um, No.

I was just folding A's clothes and thinking how tiny she is. She's wearing 12 months and she's 25 months old. What's really funny is that every once in a while someone will ask how old she is and, when told, say, "Wow, she's so tall!" Cracks me up!!! I guess it's because she's so skinny as well as being short.

But, I'm only 5 feet tall myself. So, I kind of like that she's tiny. I always loved being the littlest one around. I figure, she's got her daddy's red hair, and my height. It's my own little way of "claiming" her, since she's adopted.

Kids like to try to grab her trach. I guess they think it's jewelry or something. But I really don't mind that. Actually the worst comments I've heard are from parents of other children at the therapy clinic. It's like they've never seen something as strange as her. Yet, they are the parents of a special needs kid. Strange.

From the Peanut Gallery

I find it kinda funny in a sad sort of way, that when people are like "oh, I'm so sorry that your daughter has problems." And people often notice dd's trach and humidivent and ask, "Will she get better?" It really gets to me. I usually say, "Oh, she's actually fine. She's not sick at all, it's just how she breathes."

I guess having a child with special needs is kind of like being pregnant: people feel less inhibited about touching and making comments. You know, like how perfect strangers feel just fine about rubbing a preggo tummy.

Usually, I just try to blow it off, laugh at the goobers. But, as A gets older and becomes more aware of language I think I will be more fierce about cutting people off. And that's where it will get hard. I don't want her to have her attention drawn to her disability. I don't want her to ignore it either. I just want, so badly, for her to roll with it.