3
December
2009
As many know, Dorrie has, on occasion, managed to flip herself over. The first time was months and months ago, but as far as both Bob and I could tell, none of this was deliberate, nor was it repeated soon enough for it to be clear she understood how she had accomplished it.
So even though we were both longing to declare that she had rolled over for the first time, we did not consider that milestone to have been met.
But I’m going to declare it met as of 1am on Wednesday, December 2nd.
I was typing an email when I heard Dorrie make a noise and looked over. She had rolled herself up onto her side and was slowly tipping forward, her left arm trapped underneath her body. I leaned over to see her face and as she appeared pleased with her new position and none of her tubes were being pulled, I did not attempt a ‘rescue’. Over the next few minutes, she managed to get herself more flat on the ground and then, after some very determined struggles, yanked her left arm out from under her tummy.
It was the latter that decided me: she meant to do that.
My only regret is that I was so busy watching her that I didn’t think to grab the camera!
Posted by mom, under moving forward... or not, our little witch
29
November
2009
So once again the ranting part of the post got far too long. The pictures are in this one instead.
In disguise as mommy
That didn’t work
With Uncle Jonathan
Playing with puppy
Such cute hair. And a tree!
Definitely ready to be done posing
Not sure why her nose is yellow so often in pictures. It’s not really that yellow compared to the rest of her face, and I can’t imagine why it would be.
Posted by mom, under our little witch
29
November
2009
No, by the grace of Miss Piggy, we don’t have it.
Around the middle of October, we started to hear tell of kids in other states getting vaccinated, but no matter who we called in NH, no one ever had any. Then we heard tell from Grammy of non-essential hospital personnel getting it in her area (aka some of her friends — people in the wrong age group and with no patient contact). We started calling potential sources more frequently after that, and eventually, the week of October 19th, we heard that some shots had arrived up north, where our specialists are. But neither they nor we wanted to risk bringing Dorrie to the hospital, and they thought for sure that our ped would have them the next week. Our ped’s office insisted this was not the case, but I thought maybe the hospital might have some insider information no one else was privy to. Reluctantly, I tried to stop myself from trying to plan ways to drive ourselves up there to get the vaccine.
Then, suddenly, everyone changed their mind. Why? Did our incessant badgering finally get results? Did the fact that someone from the hospital actually talked to the nurse at the ped’s office finally make their assertion that they had no vaccine real? I have no idea. But somehow, what had been on Friday ‘wait until the ped’s office get some’ became on Monday ‘the nurse will drive down with a dose and give it to Dorrie on Wed’.
First shot acquired and given, check. I tried to stop thinking about it, figuring that by the time she was due for her second shot, there would be more supply and we could worry about it then.
Sure enough, mid-November, the ped’s office called to tell us that they were finally going to get some vaccine in and did we want any? Hell yes, I said, and noted to the woman on the phone that Dorrie had actually gotten her first dose on 10/28, so if we went by the minimum three weeks in between shots, she could get her second dose on 11/18. And could we just have our home nurse go by the office and pick it up and give it? She left and (I assumed) went to relay all this information to the doctor. She returned to the phone to say this was fine and we could come pick up the shot on Wed morning.
Wed morning rolls around and the nurse heads over to pick up the shot. Except once there, they are happy to hand over the vaccine. But what they won’t do is actually provide her with the order that allows her to give it. Why? Because even though every single piece of vaccination guidance states that the second shot can be given after 21 days, their office policy is 30 days or bust.
The nurse very wisely took the shot (possession is 9/10ths of the law!) and came back to report this latest idiocy. We put the dose in the fridge and began calling people again. But we couldn’t get anyone to sign off on it, so in the fridge the shot remained over the weekend. On Monday we tried calling again and still the ped was being recalcitrant. At this point we were getting irritated — they were saying they wouldn’t even give the order for the next Wed (the day before Thanksgiving), because that was only 28 days and not 30. (Because somehow the terms ‘month’ and ‘four weeks’ became equivalent in their heads.) Because of the holiday, we had no nursing coverage after Wed, so that would essentially mean putting off the shot for nearly a whole extra week.
Fortunately, once again persistence and nagging paid off. More calls on Tuesday eventually produced the desired result. Someone decreed from on high that bending office policy to follow state guidelines might not be the end of the world and we finally got our order to give the dose at 28 days. So now, theoretically, as long as Miss D remains swine flu free for the next couple of weeks, she should be pretty well covered.
We just have to figure out where and when to get Bob and I some vaccine.
Posted by mom, under medical morons, our little witch, trying to stay healthy, wtf, people
14
November
2009
Please do read the latest insurance saga below, if only to see a concrete example of the kind of mess private companies have made of complex health care. Honestly, for healthy people, it’s not going to make much of a difference if the health care system is private or public: no one is suggesting physicals and routine things like that will be eliminated. Where the streamlining and improvement will be is in chronic, long-term care. These are the cases that sap profits, because they aren’t one shot deals, they are continuing bills over an indefinite period of time. And these are exactly the cases that private companies try desperately to avoid, by using every trick in their arsenal to get out of paying and dump the costs onto families who are already stretched to the limit trying to coordinate care through five or six different organizations on top of dealing with a medically complex relative.
But also, some pictures I uploaded shortly after Bob’s last post, but then didn’t ever share here.
Ooh. A new shiny toy!
Head Butt!
Go me, I knocked it over!
Let’s try that again
Hey, there’s a phone, too
Posted by mom, under insurance drama, our little witch
14
November
2009
So as mentioned a couple of months ago, our primary insurance changed at the beginning of September.
Fairly shortly after that, I got (several) letters in the mail from our new insurer MVP. These stated that Dorrie’s ventilator, oxygen and respiratory supplies had been authorized for one year. Presumably next year they will decide again if she’s allowed to keep breathing.
I never got any letters stating her enteral feeding supplies had been approved, but though this made me uneasy, we had updated our feeding supply company about the change in insurance, so when September and October passed without any incident, I put those feelings aside. As it turns out, this was not correct. At the beginning of the month, after two months of supplies had been delivered and were supposed to be billed to MVP, we got a call from our supplier telling us they’d just discovered that they were considered out of network and MVP would not pay them for the supplies.
AUGH.
Two months worth of formula (32 cans at $37/can), bags (60), feeding tube extensions (8), replacement G-tube button ($160), assorted syringes, feeding pump rental are easily $1500 and possibly more. We’re still at this point not sure if we’re going to have to cover these costs.
In any case, we called MVP and asked for the name of an in-network company we could use instead. They provided one, and we called them up. We gave them our list of supplies and after a couple days they came back with a reply: MVP would pay for the feeding pump rental and (presumably?) the g-tube button replacements, but they would not pay for the formula or the other ‘disposable’ supplies.
Clearly this was not acceptable! Fortunately, NH law states that the formula must be covered if we have a doctor’s order, something MVP was apparently aware of, since when we called them they didn’t seem to argue about it (though they also have yet to actually pay for any, so we’ll see). But they are still balking at paying for the other supplies. Why the hell would they pay for a feeding pump and g-tube if they won’t pay for the supplies that allow us to use it? Even the doctors are boggled, because these are all things we have an order for and they are clearly a medical necessity, necessary to sustain life. You may die slower than if you didn’t have oxygen but you still need food to live!
Anyhow, we sicced the doctor’s office on the insurance about the supplies, but we also called NH Medicaid, where Dorrie has secondary insurance due to her medical disabilities. They said that they will cover the disposable supplies if we cannot talk sense into MVP. So we called the new company back and told them to get going. Except. They then informed us that they do not work with medicaid for enteral feeding supplies.
AUGH.
So we called MVP back again and asked for another feeding supply company. We confirmed with this company that they do, in fact, work with both MVP and Medicaid. Of course, all of this song and dance took a whole extra week and we just asked the doctor to fax all the orders to the new company on Friday afternoon, something that will not actually occur until Monday. In the meantime, the original supply company needed their pump back, and UPS picked that up from us yesterday. Hopefully we will get our new pump from the new company before the end of next week. The old company has not yet collected their IV pole, but I am sure they will need to do that soon, and we are still arguing with our respiratory supply company about having them send us one (since mostly we need the pole for the vent and humidifier).
And then, on top of this.
After multiple faxes and phone calls, we managed, in September, to get Dorrie’s PPI Zegerid approved by MVP. Now, Medicaid has placed it on the list of drugs it will not cover, so if we want to continue using it, we’ll need to pay the co-pay. The end of the world? No, but still another pin-prick in a week full of stab wounds.
Dorrie was miraculously approved for Synagis for a third year (and yet they will not pay for feeding bags?). MVP contracts with a mail-order pharmacy to send this out, but they also told Dr Optimist’s office that they could just add Dorrie’s dose in to their general order and get it all at once from their usual supplier. This broke the brain of the mail-order pharmacy and they called us and the doctor’s office half a dozen times, utterly confused, trying to find out when and to whom they were supposed to send it.
So, in short: MVP, a company I had never heard of prior to September, now has commercials on tv every five seconds telling us how awesome they are. This is a BLATANT LIE. They have been nothing but a headache and their current refusal to cover medically necessary items may be ‘legal’, but is definitely unethical.
Posted by mom, under insurance drama, wtf, people
26
October
2009
On an unrelated note, I have made a discovery: Dorrie really likes my singing. I sang to her some when we were still in the hospital, but I have rarely sung to her at home, because there have rarely been situations where (a) she is awake, (b) I want her to sleep, and (c) I do not have an audience besides her. (Because I am kind of shy about singing in public.) But a few weeks ago, I finally gave in and decided to try singing to Dorrie at bedtime, and darned if it didn’t quiet her down like magic. I even glanced at her sat monitor while she listened, and her heart rate had dropped down to the levels we normally only see when she is sleeping soundly, even though she was still awake — a sure sign that she was very, very relaxed.
And I was amazed by this, because frankly, I have a terrible time trying to get her to respond when I talk to her. I’ll try calling her name, clapping my hands, making that popping noise with my lips that she seems to like, and usually she totally ignores me, but when I start singing to her, her reaction is almost instantaneous. And I know she is really listening, because when I sing what seems to be her favorite song from my repertoire (“Z Y X”, from Here Come the ABC’s), not only does she become very relaxed, she almost always breaks into a smile when I hit this particularly high note near the end. And of course, this also makes me feel much better about her hearing in general — her refusal to respond when I talk to her sometimes makes me worry, but if she is hearing me clearly enough to recognize a tune, she must be hearing a lot more than I have been giving her credit for.
Posted by dad, under our little witch
26
October
2009
No, none of us are sick — thankfully. However, both of our nurses are sick all of a sudden, which means that our normally well-organized weekly schedule is going to be thrown for a loop. The night nurse is only scheduled for Monday and Tuesday, so we are not really expecting to see her at all until next week. The day nurse is scheduled for Monday and Wednesday, as well as Thursday night, but we have had no word yet on what she thinks she has or when to expect her back. She was out today, and suffice it to say, if she has anything that might be contagious, we probably will not see her Wednesday either — and even if she thought she were healthy enough to come in, we would probably prefer she take an extra day anyway, just to be sure. So, the overall list of activities that this development will disrupt:
- Shopping Monday night
- Mom’s schoolwork Monday and Tuesday nights
- Our ability to get more than five hours of sleep Monday, Tuesday and Thursday nights
The only silver lining is that I have a major project I am trying to finish for work, and Dorrie usually behaves well enough for me during the night that I’ll be able to work on it while she sleeps. (Mom is the opposite way — she would prefer it if Dorrie were awake, since once it is late enough, Dorrie can usually entertain herself and let Mom do her work, whereas once Dorrie decides to go to sleep, she usually requires Mom’s constant attention.)
Posted by dad, under nurse or no nurse, our little witch
17
October
2009
Time for me to post something, because Mom has ABANDONED US! ABANDONED I SAY!
Actually, she just had to go to Pittsburgh for classes again, which means that Grammy came over to help with Dorrie, and it’s just the three of us for the weekend. Which isn’t too bad from my perspective — I already pretty much watch her all day Saturday on my own because Mom has to go to work, but this way I have some help, which means I can take a break and write a post. (That, and Mom insisted I upload some pictures from the weekend so she can see how we’re doing while she’s away.)
Grammy sitting with Dorrie in her new bumbo-esque chair, playing with the little activity center Grammy got for Dorrie.
Mom called while Dorrie was in her stander last night. Here is Dorrie with my cell phone on speaker while Mom is talking to her.
Keeping Dorrie entertained while she is in her stander.
Usually when we put Dorrie to bed, we change her clothes into whatever she is going to wear the next day, since it saves time. Last night however, she got to sleep in an actual night shirt — and here it is. The only problem with trying to get a picture of her was that she discovered that if she lifted her legs, the shirt would slide up to her waist, which she found highly entertaining, but which looked rather undignified.
She’s just a happy little girl.
Her latest new toy is an Elmo doll that can stand, sit, talk, sing, and gracefully accept its fate when it gets knocked over. (“Elmo got so excited he fell over! Hmm… maybe Elmo will take a nap right here.”) Her initial reaction was utter delight, although she soon started showing signs of… concern. But I have a feeling she’ll warm up to him more when she is more used to him.
Posted by dad, under our little witch
12
October
2009
They are often making us look bad, with their many weeks of vacation and low-cost health care.
This story from a UK source is really interesting. I saw a blurb about it on Slate and was skeptical (sceptical?), but if the reporting is accurate, Europe once again makes us look bad. We get Jenny McCarthy and the anti-vaccine hysterics, and they get this guy.
Posted by mom, under tales of interest, we interrupt this blog
6
October
2009
MICE (developmental services for visually and/or hearing impaired children) came for their monthly visit on Friday. OT and PT managed to come then too and we discussed how difficult it is to sign to Dorrie while we’re using our hands for other things (supporting her arms, holding her up, etc.) While everyone agreed on the necessity of being consistent in presenting visual language to her, I don’t think any real ideas were proposed to make it easier to do.
She continues to make small improvements in her hand control, her ability to scoot around on her back, and the effort she expends to hold her head up with proper support elsewhere. But she’s still not anywhere near being able to provide the head control she needs to even safely prop sit or be carried with one arm. It’s very discouraging. It’s easy to see how much easier life would be if she could just capture this one skill. I’m left wondering where we would be if we hadn’t had the major crisis that we did back in Feb-April 08. Was she really making progress on head control before that? She was still so young then, it hadn’t entered our heads to worry about it, and we had no reason to believe it would be a problem. Looking at pictures, she appears better off than she is now, but pictures lie so easily. I had her wrapped in a towel the other night and by arranging it just so I could hide all the tubes and wires. Caught at the right moment, the right angle, everything looks normal.
I like the way they’re both looking to the same side in this picture, and the fact that you can see Dorrie’s neck. It’s an illusion — she’s leaning back over daddy’s arm — but it’s what she probably would look like most of the time if things had worked out differently.
Here’s one of the out-takes from her visit with great-grandma. SMACK.
We got her the slide and swing for her birthday, and yet after her traumatic introduction to the slide, we hadn’t really used it at all. Trying the swing out went a little better. She fit well, but the pictures are a bit deceptive: we had to push it forward a smidge, giving it just enough tilt to have gravity assist her in keeping her head up.
What’s daddy doing back there?
Something is very wrong with you people.
Dorrie’s newest favorite hobby is to watch her sat monitor. She’s especially amused when it alarms or stops reading. I’m not entirely sure she’s connected the fact that this often happens when she bangs her foot on the floor, but she does it enough regardless.
She’s also interested in all the tubes and wires that constantly surround her. This day was unusual, because she didn’t get upset when she moved off of her mat and the carpet and onto the tiles. Most of the time she finds them too cold to stay on them for an extended period.
She’s been working on a new face.
Sadly, she’s pretty much outgrown her SnugRide 32, forcing us to move to the next level of car-seat and abandon the infant carriers we’ve been using for the past two years. Her new MyRide looks incredibly comfortable; everyone who’s seen it has wanted to sit in it. She approves.
Beautiful.
Posted by mom, under little fat fairy, moving forward... or not, our little witch