Could it be??? Could it finally be?

Maggie has been waiting to get a walker for over three years. The reasons for the delay are frustrating and annoying and not worth relaying here. (but know I'm steaming just a little thinking about them...)

Today we went to the doctor and when we came back a man got our of his car and approached us. I smiled, thinking he wanted directions, but NO! He was here to measure Maggie for and try her in a model of the walker! I almost missed him because if I ever knew about the appointment,  I completely forgot. No matter. We found each other and Maggie was chomping at the bit to try it again.

She loves it, but she does tire easily because it's a ton of work for her.She is using muscles she never uses and it's hard. It's also very scary for her, but she just grabs that wheel and moves herself around for as long as she can. I had to grab that vase of roses in the lower left corner of the 1st picture picture as she knocked it over.

                 

Look how TALL she is!

Keep your fingers crossed that it actually comes through this time! It can only help her in so many ways and she can definitely have a little fun too.                      

Home again home again, jiggity jig

Maggie is home and fine. We came home Saturday around noon. There was no reason to stay. There was really nothing from which to recover. After all that it was a bit of a non event. The highlight of the stay was a visit from Tim on Friday evening. He climbed right in bed with Maggie carefully moving tubes and wires.

For the past 18 months we have lived under a cloud. Maggie had a life threatening condition. Maybe it had been there a long time, maybe it was newly formed. It was a time bomb and was going to effect her life. It certainly explained her continuous difficulties and symptoms that would not go away.  We waited and waited for something to happen, but gathering all the needed specialists took months. Finally we had a game plan, but then the surgeon declined to get involved. Back to square one, a little more bruised and frightened and more than a little angry.

We found other surgeons who proposed a minimally invasive procedure that might help. We jumped at it. We knew it might not work, but we had to give her every chance. I worried that we were going to cause more harm than good. I worried that it would not work. I worried that we would get even worse news. I worried that we were playing with fire. I fretted and wondered but decided to proceed.

Everything was arranged around this surgery. We arranged it to happen after our German visitors left because that was just too much of a cultural exchange. Once we had a date, everything was focused on the weekend. Though he has gone every year since I've known him, Steve declined tickets to the Big Game (Cal/Stanford for those of you not in the Bay Area). I declined a couple of invitations to things so we could focus on Maggie. Of course we canceled the school bus for this week so Maggie could recover from this delicate procedure.

The procedure was Friday. They went in and were done in 40 minutes. The condition did not exist. There was nothing to fix. I guess that's good news, but her symptoms will not improve because this problem is not the cause.  The doctors who declined to help her any more made that decision on erroneous information. All that anguish and anger were for nothing. I am more than a little irritated.

It's Thanksgiving week and I am trying very hard to focus on the grateful part of this story. I am very grateful that Maggie does not have this condition. I am very grateful for the surgeons at Stanford who were willing to go in and try to fix it and let us know it wasn't even there. I guess I'm grateful to know who I can depend on when the going gets tough and who will walk away.

I'm also grateful that it rained so hard last night and Steve didn't mind watching the Big Game from the living room while he folded laundry. I'm grateful for the uninterrupted sleep I got Saturday afternoon and evening even though I missed  the two events.. And even though it's too late to arrange for the bus this week, I am grateful that Maggie can go to school on Monday and Tuesday.

Mostly I'm grateful that it is over and Maggie is fine and that black cloud that has been hanging over her head for 18 months is finally moving on. Or was never there.

I'm grateful the worst thing to come out of this surgery is frustration.

The Devil you Know

Our"new" health insurance kicked in November 1. I have the "new" in quotes because, as luck would have it, it was the same carrier as the previous job. It's far from perfect but I know what to expect. I believe that's known as "The Devil you Know."

Lately I've been receiving calls from the insurance company touting various programs they have for which Maggie qualifies. These are always "benefits" of the plan that are "free" to Maggie. There is always one problem though. These "free" benefits are not helpful to us in anyway. These are programs for specific diagnoses without regard to any other issues Maggie might have. Certain medications or frequencies of codes trigger something in a computer program and I start getting calls from well meaning but completely clueless individuals. I know what they are going to say almost before they say it because I receive the same calls about once a year and always several months after the policy has any changes at all. This time it was the same coverage, but a different employer, and we were treated as brand new policyholders. Same child, same doctors, same monthly bills, same supplies, same suppliers and pharmacies and same coverage. But we have to start over with all the calls.

Last week it was Program X which could ease my mind and allow me to talk to a nurse once a month to answer questions I have about Mary Margaret's condition. (They didn't specify which one). In the past I would sign up to look cooperative. I would sit while a nurse came here spent a couple of hours taking a report and never show up or call again because Maggie's complexity freaked her out. Now if it doesn't work I don't take it. I don't want to waste anybody's time, but.I wish that went both ways.

I listened politely to the program and then sighed and said, "Thank you very much but i don't think that's something we are interested in. I have a number of treating professionals available to me quite easily." She chided me a bit, which is never a smart thing to do. These nurses will talk directly to you every month. Really lady. I have one downstairs now and another coming at 11PM. I talk to nurses  until I'm blue in the face. My daughter is total care and this program is not designed for her. Thanks you but we are not interested. Done.

Or so I thought.

This morning I got a call about Program Y. Here's the gist of the conversation

Him:Can I speak to the parent or guardian of Mary Margaret.
me: Speaking.
Him: Free program, blah blah blah for which you daughter is eligible.
Me (bored) : and which of her 57 problems triggered this program.
Him: Well I can't tell you until I know her date of birth.
Me: I don't want to give you her date of birth or any other information until I know what this is about.
Him (panicked,) Ma'am there' something called HIPAA.....
I stopped him right there
Me I am intimately familiar with HIPAA. Here's her date of birth (confirm other information)
.Him: This program will help you better control your daughter's illness because you can talk to a nurse once a mon ...
Me: STOP - I received this call last week and told them this wouldn't work for her.
HIM, NO, that was program X, this is program Y. It's specifically tailored to your daughter.
Me: OK, what is it
HIM. (very concerned): I believe your daughter has been diagnosed with (drops voice and fills it with dread asthma. Is that correct? (sounding sympathetic)
Me - (losing all neck control and dropping my head,) OK, You need to listen to me.  No, actually that is NOT correct. She takes many of the same medications that asthma sufferers do which is probably why this was triggered, but she does NOT have asthma per se. She has the bigger meaner cousin of asthma and requires round the clock care. Hence this program is likely NOT tailored specifically to her at all, is it? You have absolutely no idea whatsoever what goes on in this house or what we have to do to care for her. There are nurses here 16 hours a day. I do the other 8 hours. If she did have asthma in addition to the other 30 things wrong with her, it would rank about #27 on my priority list. Please take my name off of these lists because it is inappropriate for you to use medical information - especially INCORRECT medical information - about my daughter for any purpose.  I'm sure that's somewhere in your HIPAA regulations.

The last thing I heard was him stammering. Another call was coming in and I told him I had to take it.
 Fortunately it was my mother and not anyone else. She loves these stories. When I told her she just said, Oh, the poor guy, but she had the giggles going pretty strong. I'm not sure she really felt  sorry for him..

I'm not always so brusque, but when entities that are supposed to be there to help us make additional work, it is beyond irritating.  They need to go back to denying claims for equipment, that's what they're good at.

Your Tax Dollars at Work

As Maggie’s favorite fictional character Junie B. Jones would say, “I have frustration in me”

Today was the annual meeting with the social worker from the Regional Center. This meeting always happens right around the birthday of the client, which for Maggie was two days ago. Hmmm. Maybe that is why her birthday is often so melancholy. I know what’s coming.
The Regional Center is a private agency that contracts with the State of California to provide state services to the developmentally disabled, like Maggie and thousands of other Californians. They are the gatekeeper of sorts when it comes to services. They can open that door and get what a client needs or stand there shooing folks away. There are many of them in various regions of California (hence the clever name). Ours is the Golden Gate Regional center, which is, by reputation, better than many.

California, like many places, is really screwed up financially. We may actually take the cake in that department; because, in addition to the financial crunch being felt across the country, California has an inept and ineffectual state government that spends more time deadlocked over issues than anything else. I think about five legislators are really running the entire state. And they are doing that with smoke and mirrors. Reimbursement for nursing is being cut 3%, which is tolerable, but there is an indication of more cuts to come, which is not.

The annual meeting is designed to determine what needs the client has and what will be done to meet those needs. The social workers are stretched beyond capacity and generally cut and paste reports from previous years to get the paperwork done and signed as quickly as possible. It doesn’t have to be right, just complete. They comply with the letter of the law, but no one -- and I mean NO ONE -- is paying attention to the spirit.

The documents were already filled in and I was just supposed to sign them indicating everything is peachy keen and working perfectly.

Except it is not.

And I didn’t.

The poor woman was somewhat flummoxed. She was very nice and understood my concern. She wanted me to sign it anyway and PROMISED to change it when she got back to the office.

Sorry. No can do.

She will email it to me for review before I sign. That is better. Nevertheless, the documentation itself is all so silly.

I feel strongly that documentation should be correct, especially as Maggie approaches adulthood. I understand the budget constraints. I understand that not everything will be fixed. Concerns should be documented even if they cannot be addressed by the system. Seems logical enough. Bzzzzzzzzzz, wrong. For example, there is a section called “unmet needs.” That would seem to be the perfect place to list needs a client has that are not being addressed. But no, that would be logical and therefore BZZZZZ.Wrong again. You just cannot do that.

You can only use the unmet needs section to address to needs that the state is already capable of addressing. If there are needs outside of the current array of services, they are not “needs” as defined by the state.

I’m sorry…what? That means there are no “needs” outside of the system. And we all know that the system is absolutely perfect and operates like a well-oiled machine.

Pssst…..your well-oiled machine is leaking. Sproinggggggg.