Sunday Weigh-In

90.4 lbs this morning. I'm afraid we've hit another plateau.

"Everyone" Knows (2)

I think the issue with C is resolved for now. N said that C approached him yesterday and indicated that N had indeed been correct, that anorexia is a "mental disorder." C had gone home and talked to his mom -- who either looked it up or clarified her original statements to C. Anyway, I could tell that it wasn't bothering N anymore because I had to ask him about it.

N is going camping tonight. I'm not nervous about it in the same ways I've been in the past. He'll eat fine while he is gone (or he knows that he won't get to go camping in the future). I'll also make sure that he eats well before and after. I hope he has fun and is able to feel confident with his friends.

"Everyone" Knows

N told me last night that "everyone" in his class knows about his anorexia. Apparently at lunch yesterday, one of N's friends started talking about suspecting that his sister had anorexia. N responded by saying that he didn't think she had anorexia (given the few facts that C shared). At that point, and obviously I'm missing parts of the story, C stood up and started shouting that N had anorexia. Maybe it was a joke, but N responded so vehemently that the friend immediately knew it was true.

The hardest part of this exchange, for me to hear, was the comment made by C that anorexia is a "life choice." I know this isn't true. N knows this isn't true. But way too many people think it is true. N tried to convince C that anorexia is a brain disorder, but C was insistent because that is what his mom told him. I told N that I could go talk to his class about anorexia -- "No, they'll think I'm weird." I told him some things that he could tell C. I also sent him armed with a Newsweek article (not exactly scientific, but a little more accessible). I'm not sure what else I can do. I'd like to have a loud voice that everyone could hear while I explain what anorexia is and what it isn't. I'm not sure anyone is listening.

Monday Weigh-In

N weighed 90.4 lbs this morning. This is slightly down from last week. But I weighed him after he had eaten last week. So, I'm not concerned about it.

This weekend has mostly been anorexia as usual. I did take him shopping for shorts. I timed it carefully and spend more money than I like. But I'm happy he found something that he likes. He did fine in the store. He wanted to buy a pair of shorts on the small side and I said, "no." I was really up front about him still needing to gain weight. I didn't want to pay $15 dollars for shorts he might wear once or twice. Plus, growing out of clothes is never a good thing for the anorexia.

N told me that he hasn't been counting calories since last week. I'm thrilled.

Shorts

Apparently yesterday was not the lull between the waves. This morning, N decided to wear shorts. That would have been a great idea yesterday (very warm temperatures), but today snow and storm warnings were in the forecast. He's worn the same two pair of jeans for months now. Shorts would have been a good change. He said, "I can't believe you're not going to let me wear shorts, just when I get the courage." It was terrible timing. Then ensued a 30 minute battle complete with lots of disrespectful language and consequences. It wasn't over food, but it was about the anorexia. N has continued to not count calories. He's winning the war with the anorexia on the food front. It's still a draw, though, when it comes to flexibility.

Waves

I shouldn't get so excited after a couple of days of good progress. I have to remember that recovery seems to come in waves. This week the wave seemed to peak on Monday. Yesterday's lull wasn't terrible. I let N go to a friend's house after school to complete an assignment. He ran in the door only to leave 15 minutes later for scouts. Thankfully, he didn't have additional homework. But it did mean that he missed his morning snack and his afternoon snack. So at 9:40 p.m. last night, he was fighting his evening snack, which was larger than usual because of his missed snacks. He said that it wasn't that he didn't want to eat something, but he was tired of everything we had at our house. We insisted. He fought back. After 30 minutes, he finally ate two ice cream sandwiches and he went to bed late.

I am so frustrated by his complaint. I shop so carefully and deliberately to refeed him. For so long he has only wanted predictable foods. He was willing to eat a variety of different things, so I was happy to stock those foods. Now he wants more variety?!?! And he complains! I'm not completely sure that it wasn't the anorexia trying out a new tactic. He seems to only want to eat food that he loves. I don't think he can stand to put calories into his body associated with something that tastes just okay. I also think he was a bit stressed about junior high registration today. We had been talking about that right before the problems with his snack occurred.

Hungry!

N informed me yesterday afternoon that he was hungry and asked if he should he eat. Of course! 10 minutes later he was hungry again and asked the same question. He did this all afternoon. He asked me why he was so hungry. I explained that his body needed the calories so desperately. I also explained that he was probably growing. I didn't mention that part of his extreme hunger probably was a result of him finally acknowledging that he was hungry. A huge step in my mind! Because I was sick, I slept through dinner. But T mentioned that N had been worried that he would throw up because he was so stuffed. I believe it. T also mentioned that N had fixated on the fact that he might be growing. Hopefully that doesn't backfire. It's good that he is hungry and eating, but he still needs to "blame" something for his eating. Maybe that will fade as he continues to recover.

N told me that he didn't count his calories yesterday. Two days in a row! I only saw N briefly before he left (early) to school. He was wearing a shirt that he hasn't worn for months. He has always insisted that it was too big. Hopefully, that is also a good sign.

Strep Again

Well, I'm sick with strep again. Apparently, the 10 day course of medicine didn't kill the bug. So, I'm back on antibiotics again. And I'm worried again about N. Without a positive strep test last time, it could mean that he is very vulnerable again. I'll have to watch him carefully.

Sunday went well for N. He said that he didn't tally his calories for the first time ever. He also kept telling me that he was hungry and I kept telling him to eat. Actually eating was more of a struggle, but the fact that he expressed hunger was a good step. This morning he was pretty cranky. I wasn't fully engaged with him so I'm not sure if it was just tiredness or the anorexia pushing back.

Sunday Weigh-In

N's weight this morning was 90.6 lbs. He had already eaten breakfast. So, this weight is not quite accurate.

N spent all day Saturday resisting and restricting. He wasn't angry on the outside, but I could see it simmering below the surface. He had tears several times. I tried to get him to go play outside, but he was also isolating himself. At the end of the day, T and my Dad gave him a healing blessing. I'm not sure N wanted the blessing (I'm not always sure that he wants to be healed). But I felt like, just like we couldn't wait for him to want to eat, I couldn't also expect him to want to get better/want a blessing to get better. Hopefully, I have enough faith for both of us to make up the difference.

A Second Visit to the Children's Hospital

N had another appointment at our local children's hospital yesterday. His weight was basically the same (though my scales show an increase). The team was happy that he had even maintained. They were also extremely complimentary about the role we've play in his recovery. I was surprised to hear that there aren't any other parents taking this same active role in their child's treatment.

N was honest about his ongoing anxieties with food. They explained that it often takes a while even after a child is fully nourished to have mental healing. That is consistent with the Minnesota Starvation Study, so I knew that already. We also discussed strategies as we register N for junior high. We are having to make decisions right now about his courses for this fall. It would be nice to have a crystal ball and know that he will be recovered by then. But I don't, so we have to make our best guesses. I'm concerned about his physical education class (which he wants to take twice as an elective). I am also worried about him being late for his first class. Maybe we can schedule a less important class for that first hour. Or maybe it would be better to have a class that he is excited about at the first of the day. The social worker did recommend that we establish a relationship right now with his school counselor. I had been thinking the same thing. So, I've already put a call in this morning.

In my prayers recently, I've had the repeated thought that N needs a blessing. T already gave him a father's blessing -- that's not what I'm thinking of. I think he needs a healing blessing. So, I'm going to ask my Dad and T (both have the priesthood) if they will give him a blessing tomorrow.

More Good Days

I'm seeing an upward trend with N right now. He's been getting to school more or less on time. He's also getting his homework done each day. He wants to go to school and seems to be enjoying it. I did see some hesitation in his clothes choice this morning, but the threat of missing school was stronger. He was iffy, but made it to school only 15 minutes late. We still have issues over food. He still resists eating here and there (usually when I change/add something), but even those episodes are spacing out. He might be getting to the point that he can start making some food decisions for himself. However, I'm not willing to let him do that until I see him make consistent choices with his school lunch (which he doesn't do yet).

Almost to 90 . . .

N weighed in on Sunday at 89.3 lbs. We're so close to crossing that 90 lb threshold. Despite our doctor's contentment with 90 lbs, I'd like to see N at at least 95. He is growing so fast, so I may need to revise that based on his height this week.

N had a good weekend. The only real glitch was Sunday dinner. He flat-out refused to eat. But I made something new (that wasn't fantastic). I think his refusal was less about the anorexia and more about anxiety aimed at a new food. He went to his room, thought about it, and came right back in when I invited him. He ate, but it took a while. He voluntarily ate his evening snack on Sunday evening.

Early!

Another good day! N ate well. He got his homework done. He had a good talk with his therapist last night. He was EARLY for school today!

A Pretty Good Day

I was right about N's homework being too much last night. He was in avoidance for hours yesterday afternoon. He cried and yelled and was generally upset and mad. We were having three issues simultaneously: 1) homework, 2) eating and 3) wanting to play his new video game.

N has been responding violently to his anger. He's kicked and seriously hurt his brother several times now. He'll also throw things and kick walls. Our concern has been big enough that we've banned him from any fighting or battling video games, computer games and tv until he changes the way he responds to his anger. We already limit that kind of stuff anyway. We've never allowed "M" games and only purchase occasional "T" games. We avoid all "first person shooter" games. N purchased a new game on Saturday, knowing about his current situation. He was mad yesterday because I wouldn't give in and let him play it.

After a long afternoon, he perked up in the evening. He got his homework done and spent some time on a make-up work assignment. This morning he was up early and he made it to school on time. We've had a few battles over food and some stuff (like the anger issue), that may or may not have anything to do with the anorexia, over the past few days. But overall, I feel like he has done better -- two steps forward -- this week. Is it the antibiotics?

Future Plans

N was pleased with himself for getting all his work turned in yesterday. He felt like it entitled him to a break yesterday. Having seen him fall behind quickly, I felt like that was a bad idea, but gave him the choice. Of course he pushed the homework to today. I think it might be too overwhelming tonight.

Speaking of overwhelming there have been so many decisions to make over the past few days. N wants to attend a different junior high, connected with his current elementary school. However, he wouldn't not be allowed to choose that connected high school, but instead would be required to transfer back to our own high school. We said, "no." It's a hard call, because he could use the stability of friends now. But how likely is it that he would continue to see these kids in his classes anyway? Junior high is a time when most kids have to make new friends. I feel like it would be harder to change into a different high school three years from now and have to make new friends all over again. It will probably take a deliberate plan, on our part, to help him make new friends with the new school year this fall. Plus he knows many of the kids already (even though he doesn't realize it yet) from church, sports and school.

We've also been considering a temporary situation that would take us to the UK for 6 months. It wouldn't be for several years. The whole trip would be paid for separately from T's salary. I feel like it would be a wonderful opportunity for our whole family. It is so hard to make future plans not knowing how N will be doing at that point. Will an interruption in school cause anxiety? Or might it be a needed break? Will he be so well established with friends that leaving would be hard on him? All these questions! If things are still bad, we probably would be able to back out, but they are wanting a pretty firm commitment now. All we can do is be prayerful.

No School

There wasn't any school today, which is good since my kids wouldn't have gone anyway. I'm feeling mostly better, but pretty weak.

N has had a fantastic day. He made a list of all the things he wanted to do today. He had 3 hours of homework to do (because he didn't do 1/2 of it on Friday). I helped him organize them so that things were in reasonable increments. Then he jumped into his schedule and got everything done. I really think it helped for him to see all the possibilities for his day as well as what he would loose if he just laid around. He also had a prioritized list for his homework (make-up work actually). He burned through that list so fast. We talked about objectives (to complete the assignment quickly) and how trying to do things perfectly might get in the way. We also talked about making best guesses a moving on even if he didn't know the answer. He got a lot done! I made sure to praise him and remind him of all the free time he had because of his hard work.

Sunday Weigh-In

I forgot. This morning N weighed 88.9 lbs, but he had already eaten his breakfast.

Family Strep

In the past 24 hours, 3 of us have been diagnosed with strep. This morning N's little brother was running an 104.5 degree temperature and we were quite concerned. Now, all of us are on antibiotics including N. N, actually, tested negative for strep -- though he has all of the symptoms. But thankfully, they put him on antibiotics anyway for a bad sinus infection. T never gets strep, go figure. So hopefully he stays well. Regardless, we should all get better soon.

The strep brings up some interesting questions. Has N's relapse the past few days been tied to getting sick? He confessed to me that he has been secretly weighing himself. I'm pleased that he told me, but I'm doubly concerned that some "sneakiness" has started. I'm eager to watch and see if the antibiotics (a z-pack) change anything.

Paul Wellstone Mental Health and Addiction Equity Act of 2007

I haven't talked about the problems we've had with our health coverage and N's anorexia. Our insurance isn't good about covering his anorexia. Many insurance companies won't cover anorexia because they view it as purely "psychological" even though a decade's worth of research is proving that anorexia's origins are actually biological (though there are emotional/psychological repercussions). We're lucky because our out-of-pocket costs, though costly, won't break us. We haven't had to consider inpatient services or other very expensive treatments because N is doing well with out-patient therapy. But many other families aren't as lucky and the costs are huge.

Anyway, on Wednesday the Paul Wellstone Mental Health and Addiction Equity Act of 2007 is coming up for debate in the house. It is not a perfect bill, but it makes great strides in acknowledging that many mental illnesses are indeed medically based and merit similar coverage. Paul Wellstone initiated this legislation (before his death from a plane crash) because of a little girl that died from anorexia because her insurance would not cover her treatment. That little girl could have been N. I have seen the research and can also tell you that N did not choose this disease. He wants to get better just like we want him to.

If you are comfortable supporting this legislation, would you please contact your representative and tell them to support the passage of this bill? I've included information about the bill below and links to your representatives.

Paul Wellstone Mental Health and Addiction Equity Act of 2007

http://thomas.loc.gov/cgi-bin/bdquery/z?d110:hr1424:

Paul Wellstone Mental Health and Addiction Equity Act of 2007 - Amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act, and the Internal Revenue Code to prohibit treatment limits or the imposition of financial requirements on mental health and substance-related disorder benefits in group health plans which are not similarly imposed on substantially all medical and surgical benefits in any category of items or services under such plans.

Click here to contact your rep: http://www.house.gov/

School Work

On a different note:
We've been working extra hard, the past few days, to get N caught up in his school work. Rather than have him stay after school, he's been spending an extra 1 1/2 hours at home. I really thought he was doing better with his school work. But even though he is extremely smart, he has terrible organization skills (both physical and mental). He doesn't turn in his assignments. This is usually because 1) they aren't done (but he won't turn it in even for partial credit -- a perfectionistic characteristic for sure), or 2) he just forgets. His backpack is a nightmare. I reguarly communicate with the teacher and I also check up on which assignments are missing.

If I didn't intervene (regularly go through his backpack with him), his grades would be even worse. I've had him stay after school to finish assignments, but his teacher says he doesn't use that time well. I've even sorted his papers for him (with posted notes and everything) and sometimes he still doesn't get them finished or turned in. I'm good with follow-through. I'll ask, "did you turn this in?" when I pick him up from school. And if not, I'll send him back into the school to turn the assignment in. Even with all of that, I'll sometimes find the assignments in his backpack a week or two with post-it notes still attached. I've even walked back into the school with him to turn things in. I'm so nervous for 7th grade (next year).

Strep

Yesterday afternoon I was diagnosed with strep. I had a miserable evening with a high fever and everything else that comes with strep. I'm so nervous, now, that N will get it. With all the research about the connections between strep and anorexia, I wonder how it would affect him.