Wednesday, February 29, 2012

You gotta see this

Get these guys a contract! They're gonna be stars!

Packing day

At noon we go over to the residence and pack up Toots' stuff to bring it home for storage.

I will try not to lose my composure.

Tuesday, February 28, 2012


We haven't spoken to Toots since my shortened visit on Friday. Very unusual for her not to call us. I spoke with the social worker at the hospital yesterday, and SW told me she wasn't interested in talking to us. Maybe we'll call her this evening.

Monday, February 27, 2012

Monday morning

Baggage's little daughter Stargirl is having surgery today. I know she would appreciate prayers and positive thoughts.

I made an appointment for Wednesday to clear Toots' stuff out of her room at the residence. She really is going back to Big State Children's Hospital. We haven't spoken to her since Friday, when she gave me a hard time during our visit.

Friday, February 24, 2012

Short visit

Toots didn't like the Aveeno skin lotion I brought her last weekend, and she requested baby lotion. She didn't like the smell of the Aveeno. Why did I accede to her request? Because she gets very dry skin in winter, and needs to be using lotion. Now that she's decided against the Aveeno, she'd rather eat nails than use it. So I brought her baby lotion. After that, my visit this afternoon didn't go well. You see, when Lew was on the phone with her the other night, and she was talking about having assaulted a staff person, he said (as we have done before), "Toots, I can't continue this conversation when you're talking about having beaten someone up. Love ya, honey, good night." And hung up. Note that he did not slam the phone down abruptly. Today, Toots started in on how she feels very insulted and disrespected by that action of his. I tried to explain to her that we cannot accept her assaulting staff, and that it is in no way OK. She said that it wasn't her fault (it never is), she got mad when they tried to get into her room, and "I just blacked out and didn't know what I was doing. When I realized what I was doing, I stopped." It was further excused by the fact that she hasn't done anything like that in years. I corrected her memory; it's been just over a year since she assaulted a police officer. She said, "Well, many months." In the discussion somewhere was, "I'm not stupid, I'm not a little kid, don't you think I know better, I apologized." Sorry, Toots, I don't buy that. Up till now, you've gotten a bye because you're a psychiatric patient. In the outside world, if you assault someone, you will be arrested and go to jail. Her reaction, of course? "Well, I won't do that!" Famous last words. How many times has she said "I know how to behave, I'll just do it", and then gone blithely on to do exactly the opposite. Anyway, to make a long story short, I left 25 minutes into an hour-long visiting period.

Wednesday, February 22, 2012

Not much news

No word from Toots or the hospital yesterday. Does that mean she's mad at us, or that she slept all day? At least it probably doesn't mean she engaged in more assaults or cutting. I'm sure we will talk to her today. Ninja is spending the day in the city with the Police Explorers. The group is going into New York to learn about forensics and, apparently, meet the cast of NCIS. I've never seen it, but apparently this is a big deal. He's loving the Explorers - comes home from meetings with a big smile. It's like "Where have they been all my life?" I'm glad he's got a new interest, as he hasn't been motivated to join any clubs or activities at school. When I think about the Ninja and the things he does - the way he makes friends wherever he goes - how much he has absorbed about martial arts, cars, sports, etc. that he didn't get from us - I get sad that Toots is not having the same kind of life. And it doesn't look like she ever will.

Tuesday, February 21, 2012

The mighty Ninja

I need a little cheering up. What does it say about me that I like to watch my kid fighting? This was the Ninja's fight at the last Fight Club ranking tournament. (He's the one with the red chest protector.) Since there were no other boys his rank and age there that night, this was actually an "exhibition" between him and one of the girls from his school. Boys and girls don't spar together in competition. She's a very good fighter too--mostly wins her division--and that night she won by one point.

Monday, February 20, 2012

Bad to worse

Well, she cut herself again today, using the piece of foil off a juice cup. I would have thought that foil was too soft to cut anything, but when Toots is determined, she's determined.

We don't have full information yet, but the unit had to "call a code" on her this evening. She got mad about something (who knows what), barricaded herself in her room, and wouldn't come out. I assume the staff tried to get her to open up, because she got madder and assaulted one of them.  Apparently the person is not badly hurt.

Oh, Toots. Where in the world can you be safely? Is there anywhere?

Thursday, February 16, 2012

Another step backwards

Toots is back on " close supervision", with a staff member near her at all times. She is upset about being referred to Big Children's Hospital and doesn't want to go there. So, she cut her arm three times (with what? Somehow she gets hold of things with points or edges), and stood outside the nursing station refusing to budge (I'm not sure about the timeline here).

I feel that 99 out of 100 people would not want to be on close supervision, and would act any way they needed to in order to end it. Sometimes it seems as if Toots welcomes it. She's always been all about the attention, and there's no attention more total than this. Just another aspect of Toots that is hard to understand.

Enough about that. Baggage of I'm looking for baggage that goes with mine is feeling especially sad today over a piece of medical news. Go show her some love.

Monday, February 13, 2012

A recipe from my long ago

I ate vegetarian for many years. Long story why I stopped. I still don't eat a great deal of meat. We had company for dinner over the weekend, and I made Cashew Chili, a favorite from my 20's. Julie Jordan, the originator of the recipe, owned a restaurant in Ithaca, New York for many years. It was named Cabbagetown Cafe, and I remember meals there with great fondness. I Googled Julie, and she is apparently working for Wegmans, a supermarket chain in upstate New York, as their head of vegetarian cooking. Good for her--I'm sure it gives her a wider audience.

Anyway, here is a link to a version of Cashew Chili, based on her original. I omitted the carrots, bay leaf, and vinegar, used raisins instead of molasses and raw cashews instead of roasted. It was delicious. I'm glad I resurrected it, and I'm going to make it again soon. Maybe I can even persuade Mr. Carnivore Ninja  to try it.

Sunday, February 12, 2012

Leaves me speechless

Visited Toots today at the hospital. It was a pretty quiet visit because she'd just gotten out of bed (at 3 pm). We were sitting in the unit dining room, and she mentioned that another girl had flipped all the tables and chairs in the room last night. Toots went on to describe how throwing furniture is "fun" because you get to express your feelings and "you get lots of attention from the staff". I said, "Toots, don't forget that, if you get a job, you wouldn't be able to do that if you got upset". She laid into me about how I "always hassle her". "I KNOW I wouldn't be able to throw furniture! Why do you always have to say the same things!" Etc., etc.

Again, nothing I haven't heard a thousand times before.

She's supposed to be in eleventh grade. We should be looking into colleges and shopping for a prom dress. Instead, she's settled into an institutionalized life of sleeping, eating, and watching TV. I fear she will never go back to school at this point. If she doesn't want to, the law says we can't force her.

I know that she is who she is, but it still makes me very sad.

Friday, February 10, 2012

Gastroenterology days

Well, Toots had her appointment at pediatric gastroenterology, for her ongoing stomach pain, yesterday. It was largely an exercise in frustration. Two doctors reviewed her history and all the tests that have been done--blood work, colonoscopy, sonograms, CT scans, you name it.

They didn't seem to be sure what else to say. Aside from some minor inflammation, there are no indications of problems. They ordered some more blood tests and a stool test. Something was said about the possibility of inflammatory bowel syndrome, Crohn's disease or colitis.

We return for follow-up in about six weeks. Meanwhile, if her pain persists, we are likely to see more self-injury, suicidal thinking, and furniture throwing.

Wednesday, February 8, 2012

Cause and effect

Just got off the phone with the nursing supervisor from Toots' unit. Because of the furniture throwing, her doctor has decided that she can't ride unescorted with me to her gastro appointment tomorrow. She and a staff person will take a Medicaid cab and meet me there. So, once again, she has sabotaged something she wanted (driving with me, so she can ask to go shopping or eat) by her own behavior.

She has done this so many times over the years, it doesn't even surprise us anymore.

Tuesday, February 7, 2012

What passes for normal

Just got off the phone with Toots. She said that she went to "school" at the hospital today, for the first time since she's been there this round. She didn't do her work in the classroom for some reason; she went back to her room on the unit and did it there. The teacher did not award her the points she was supposed to have earned.

"So", she said matter-of-factly, "I threw furniture."

Monday, February 6, 2012

On a chocolate note

We attended a Super Bowl party at the home of friends last night (Yay Giants!). The Ninja had requested a chocolate cake. I made this devastating Flourless Chocolate Cake which is very unhealthy. People with cholesterol problems should not even be in the same zip code with it. But it is truly amazing. Thank you, Ann Hodgman.

(More on her, later.)

It's always something

I made the appointment with the pediatric gastroenterologist on Saturday morning, and informed the hospital immediately. The plan was for me to drive her back and forth to the appointment. I also re-confirmed this with the unit's nursing supervisor, when we were there visiting Toots yesterday afternoon. So there shouldn't have been any problem, yes?


I arrived at the hospital this morning, leaving a good window of extra time to get to the doctor's office. Informed the nurse at the nursing station that I was there to pick up Toots, and all heck broke loose among the staff.

See, due to her self-harm and suicidal statements Toots has been on "close supervision", which means a staff person is only a few feet away from her, 24-7. Since she has been OK for a few days, this morning she was taken off "CS" and moved to the next lower level of supervision. Her psychiatrist had announced, during morning rounds, that because Toots had just come off "CS", she couldn't ride with me alone in my car. The morning staff had not been informed about the appointment. Many phone calls were made among various offices, trying to find a staff member who could drive her. (I would have met their vehicle there.) I didn't see her, but back inside the unit Toots was apparently having conniptions at the idea of a staff person driving her. (I strongly suspect that she was intending to ask/tell me to take her out to lunch. Because of the timing of the appt., I would have done so anyway. But I digress.)

In the midst of all this, Dr. decided that Toots could only travel in an ambulette. I was informed that an ambulette would be pulling up momentarily. Then, it wasn't going to happen. I was asked to call the doctor's office and try to reschedule the appointment for later in the day. Knowing how this office runs the schedule, I didn't think it was likely, and I was correct. I was fortunate to be able to reschedule for Thursday. If she has an OK couple of days, they will let her ride there with me unescorted.

So is anybody thinking, "Is that really a good idea?" It probably wouldn't have been a problem today, and there probably won't be trouble on Thursday. True, in past years, Toots and I have had some scary car episodes. Like when she tried to seize the steering wheel and run me off the road....and when she fought me and gave me a bite scar that's still visible on my arm....

But, going to a medical appointment she has been clamoring for, and with the prospect of food afterward, most likely she would have been fine.

Still, you never know. And, this is not the kind of hospital policy we tend to question (although there certainly have been others over the years). And, I'm used to things not going as planned around Toots. Very used.

Sunday, February 5, 2012

Stomach pains

Toots has continued to complain about her stomach hurting, and her psychiatrist has given her Percocet for the pain. This doctor asked me to schedule an appointment for her with one of the pediatric gastroenterologists at Big University Hospital, where she gets most of her medical care. I was able to get an appointment for tomorrow. We'll see what transpires.

Toots has had chronic constipation for almost ten years. We have run countless times to the emergency room, and almost always there has been nothing else wrong but constipation. The doctor is speculating that she might have ovarian cysts.

Saturday, February 4, 2012

Another detail

Regarding the overdose threats. Toots told her intention to a staff member on the unit, on Wednesday afternoon. That evening, when she was given her bedtime meds, the administering nurse saw that she did not swallow her Seroquel, but hid it in her pants. The nurse asked her to take it out, and Toots went ballistic, screaming "Why doesn't anybody trust me? I took it!" and threatening to punch the nurse in the face if she touched her. Toots went into her room, and another girl followed her and said, "I know you have it." Toots gave the Seroquel to the girl, who took it to the nurse.

She has a history of "cheeking" her meds, and she's very crafty. She tells us that she "doesn't want to be in the world anymore".

Downward spiral

Toots is still in the community psych hospital, and is being referred to the children's state hospital, for her self-harming, suicidal statements, and threats to save up her meds and then overdose, over the last few days. If she goes, it will be her third or fourth time there. I have lost track over the past nine years.

Toots has also been talking again about how she wants to be "un-adopted" and go back into foster care so that she can live with another family. Hospital Social Worker tried to explain to Toots that no foster family would take her, at her current level of self-harm. Didn't think it really got through. She was reluctant to tell me this. I told Social Worker that it hurt, but it was nothing we hadn't heard before. And that we are not dissolving the adoption, no matter what.

If Toots goes to the state hospital, the residence has to "close her bed". That means we will have to go and clean out her room. That will be fun. Not.

Residential Social Worker said that she could apply to come back. When would that be?

Wednesday, February 1, 2012

The Ninja's demo team

The name is Blue Thunder. They didn't win their competition, but they still rock.

Still in hospital

Toots is still in the hospital. Social Worker went to visit her yesterday afternoon, but I haven't heard from her yet.

One of Toots' complaints about school, during her two days back, was that the boys in her class were teasing her. She's in an 8:1:1 class, with only two boys in the group. Social Worker spoke to the assistant principal, who said that the boys in the class were not the teasing kind, and he would be very surprised to hear that they were doing that. We have no reason to doubt him, as we have found the school staff to be truthful and helpful. What is the real story? Were kids teasing her in the lunchroom or hallways? With Toots, it's so hard to know what the truth is.

Toots was also complaining that she wanted to go to Tech, the vocational high school where she was scheduled to go part-time starting last fall. (She didn't go because she was hospitalized.) Assistant Principal reminded Social Worker that attending Tech requires nearly perfect behavior, and she wouldn't be able to take her 1:1 aide. She would need to attend the High School Day Treatment program for some months, and display appropriate behavior, before she could try Tech.

Social Worker was going to talk with Toots about all this yesterday. Toots' reaction may have been, "Then I'm not going back at all." We have about run out of options. If she doesn't go to school, she can't live at the residence. But we can't have her back here, either. Don't know where we will go from there.