Our Prader-Willi Life

3:55pm: Frank's Broken Ankle
On Valentine's Day Frank slipped on some ice at the Community College and seriously broke his ankle. Kyle was with him at the time and he was taken to the hospital by ambulance. He was in such pain. We took him to see Dr. McDevitt the next day and it looked ok at that time. However, on the 20th when we took him back and they x-rayed him again, things in his ankle had shifted enough so that Dr. McDevitt said that he needed surgery. On the 21st he had a six-inch titanium rod screwed into his fibula. There are five small screws, along with one large screw that will need to come out shortly. He came through the surgery pretty well, but has since been anxious about the screws coming loose and traveling up to his heart and killing him.

The first couple of weeks were awful. Frank couldn't put any weight on the ankle at all and needed constant help to do anything. Cyr and I have been taking off every other day for the past five weeks. He finally started walking around the first week of March. I decided to try leaving him alone for a day last week and he got into some food - bad - bad -bad. I guess someone had left the freezer open and so Frank discovered it and got a 4 pound bag of frozen ravioli's. He ate most of it and got really sick. Diarreah everywhere. It was disgusting. On Monday he had started back to school, to a reading class. He couldn't go on Wednesday, he was too sick. Tuesday (3/14) was the day he had eaten all the ravioli. Of course, Frank had to drop all his other classes. He was too injured to go at first, and then he had missed too much. I had tried like crazy to keep him in the math class that I was taking with him. I brought home all the assignments and tried to help him with them. The day he went back (in a wheelchair), the teacher gave us a take home quiz. Frank was lost. There was no way he was going to make it.

So now we have this problem of nothing for Frank to do and the fact that Cyr and I are using all our leave. We have a meeting tomorrow to get Frank into Opportunity Builders in Hanover. It is a sheltered workshop environment that is real work, but closely supervised. I'm hoping he can do school on Monday and Wednesday mornings, have some service hours for supervision on Monday and Wednesday afternoons, and then go to OBI on Tuesday, Thursday and Friday. Then after May, he could go to OBI full time.

Frank still thinks he is going to be a vet. He doesn't understand that it takes a certain kind of person to get a college degree and to go on to vet school. Even before the broken ankle, Frank wasn't doing well in school. He hardly ever did any work and he was antagonizing his teachers and always trying to be funny. It was just too hard for him. He doesn't get it. Actually, breaking his ankle was a face-saving way to get him out of college without his getting kicked out.

Here's a couple of pictures:

10:46am: Walk at Nature Trail

Frank and I went walking on the Piney Orchard Nature trail yesterday. We did a half an hour. He was short of breath, but it was so beautiful there that he didn't seem to mind.

This morning at church I found a wrapper of a jumbo candy bar in his pants pocket. I can only guess that he stole it while we were at the drugstore last night picking up some cards for father's day today. Rachel would tell me that I should never take him into a store, that he always steals when he gets a chance. Maybe she's right. I just can't see leaving him in the car every time. I just can't do it.

Someday he's going to get caught. His weight this morning was 228. Down a couple of pounds by not going to Toni's. I told him that he can't take me to the dinner out until he gets back to 223.

Here's another view of the nature trail. I had no idea we had a walking path so beautiful so nearby.

1:23pm: Graduation!
Actually just a citation, but still - he walked across the stage! He was so excited! Here he walking across the football field.



And the cute scoreboard---

5:34pm: Polish Festival
Lisa couldn't make it today for Frank's four hours of care. The rest of us had planned on going to the Polish Festival while they were out. We decided, rather than miss it, we would take Frank with us. It was a hot day and basically, I babysat Frank while the others did whatever. I still am glad we went. Frank had soup, a couple of peirogis and half a pastry. At least he walked alot. Frank was demanding though. He wanted whatever the other kids got and he wanted a lot of attention. Here's a picture of Frank eating and me supervising. Yes, I had a couple of cold ones. Rachel drove home. It's nice to have a designated underage driver in the family!



Here's another picture of the family at Patterson Park.

5:42pm: Last regular day of high school
Here's a picture of Frank from yesterday at Johns Hopkins hospital in Baltimore.



We went there to see about getting a sleep study. They were supposed to call me today with an appointment but they didn't. I guess I'll call them Monday morning. I wonder why they didn't call. He's having a fit right now because I said we might go to the mall, and then I decided not to because I'm short on money. He's crying and acting like a 2 year old. I should never mention the possibility of doing anything with him because he takes it as fact and cannot handle it when it doesn't happen.

I should know better.

Well, Frank walks across the stage next week. He's going to be done with high school. Hope this community college plan works out!

Here's another picture from the Prader-Willi Walkathon at Calvert Hall High School a couple of weeks ago. We all got t-shirts.

8:30pm: Tight tight t-shirt
Frank and I just went over to return some movies to the video store. He's been in his room all afternoon watching videos. When he came downstairs, he looked like he was about to burst. I mean his, xl t-shirt was stretched very tightly around his belly. So tightly that I said, "Oh my God, what have you been eating?" As we left, I asked Cyr to check his room. He checked while we were gone and called me on the cell phone. There were several trash items of food stuffs, some of which were ours, some of which are not. One was an empty bottle of dill pickles that is not a brand that we buy. I asked him where he got it and he said that he got it out of someone's recycle bin. More than likely he got it out of someone's garage or kitchen and ate all the pickles.

The thing is - he still wants his dessert. I think I'll give him a carrot. Otherwise he'll have a violent fit. I'm afraid it's like that Monty Python show. One more wafer and he will burst.

Tomorrow I have to take him to Hopkins for a doctor's appt. After that it will probably be too late to take him to school. Since I have to go to the office, I kind of have to leave him home alone for a few hours. So what will he do? Roam the streets? Check people's open garages/kitchens? Steal food from 7-11? Some day soon he is just going to burst. I will check his weight in the morning.

He has gained 30 pounds in the past year. Both Kennedy Krieger and Family Practice have it documented. We've got to get more help from the state. I'm calling Julie tomorrow. The whole issue with AACC next year has me scared too. I'm not sure college is enough structure for him. We've got to make it so it is.

10:01pm: He's always hungry
Frank just came downstairs and told me he's really really hungry. I said, it's 10 pm, just get a drink of water and go to sleep! He says that if he doesn't get something to eat he feels like he will sneak. I gave him three low-fat triscuits. Cyr says not to give in to him. It seems like he is happy with a small amount, but, I really don't know what is the right thing to do.

On Saturday I was out of town with Rachel visiting Salisbury and Frank was home with Cyr and Joe. Early in the morning, he twisted his ankle and hurt his foot. He said it hurt really bad, but he went ahead and went bowling. Cyr wouldn't listen to him. It was still hurting yesterday (Monday) so I took him over to the nighttime peds. I thought maybe he had broken one of those little bones in the side of the foot. I did that myself when I was fifteen. Turns out nothing is broken, they told us to wrap it up and to keep giving him advil and ice treatments. Thank goodness nothing is broken. But now he is telling me he doesn't want to go to school tomorrow, that it hurts too bad. Of course, he could go bowling, out with Lisa, to school today, etc, etc. He just wants to go to Toni's so that he can eat.

Did I tell you that he weighed 232 at Kennedy Kreiger last week? He's been weighing 225 at home here in the morning, so that must have been a weird day.

I have a birthday cake for Rachel locked up downstairs. I hope it makes it to her 18th birthday tomorrow.

10:45am: Locked himself in the bathroom at school
One other incident I forgot to mention. A week or so ago, I got a call from Arundel to come and get Frank because he had locked himself in the health room bathroom. Turns out on the Friday before, he had refused to leave a classroom when the aide asked him to. When the aide told Mrs. H about it on Monday morning, Mrs. H told Frank he would not be able to participate in the activity that afternoon. Well, the activity involved food. So Frank was very upset! He locked himself in the bathroom and would not come out. I told Mrs. M that it would take me over an hour to get there from work. Cyr had to take off too since we had carpooled that day. We got almost to the school when Mrs. M called me on my cell and said that Frank had finally given up and gone back to class. AAGGHH! We decided not to go back to work. Just too much driving - I figured I would have had to put 130 miles on my car altogether if I went back. I went shopping instead. I was kind of proud that Frank got himself back together. Still it was almost two hours. He really acts like a two year old very often.

10:10am: Recent updates
It has been awhile since I did any updates here. The usual things are still happening.

1) My 17 year old daughter was in the pit band for Fiddler on the Roof at her high school. She's always played softball in the spring before, but this year she decided to do something different. She had a blast, the play was incredible, and she asked if we could have the cast party at our house after the last performance. We agreed. We had over 50 teenagers at our house and had lots of pizza and cokes and snacks. The kids had a good time, but I had a horrible time because the entire time I had to basically sit on Frank to keep him from going crazy with the food. I guess I had thought that he would be tired and would be sleeping since he is usally asleep by 10 or so and the party didn't start until after 11. He really got beligerant that night. He couldn't understand why he couldn't stay with the kids and make new friends. We let him for a while, but all he did was eat. He didn't talk to a soul. I finally got him to come upstairs where I sat with him in his room and rubbed his head and tried to calm him down. He just cussed at me and started having a fit. Then Cyr wanted to get involved by yelling. I couldn't allow that! It would have made things even worse.

2) We've gotten several calls lately from the school where Frank has been stealing food. He stole a cake from one classroom. They searched his bag and found it. He stole someone's lunch from the refrigerator. This new aide is terrible. He's left unsupervised too often.

3) We have a new service coordinater. She told me to get applications for respite care from the ARC and from Bello Machre so that we can say we've tried everything. The state will want us to have done this before we can get any residential services. I've tried to do this before and give up when I never get my calls returned. So here I go to try again. I have to keep on calling. Anyway, I finally got a call back from Bello Machre. They can't handle Prader-Willi. They had a client with it a few years back and it didn't work out. They don't lock up their food and they don't provide 24/7 coverage. No wonder they hadn't called me back. I hope to get some kind of response from the ARC this week.

4) We have a new weekend care giver: Lisa. She's good. The last one we had - Trina -was ridiculous. She never showed up on time and she didn't have a car, so she was trying to get rides from people all the time. We had to drive her home to Columbia (30 miles away) twice. One time she did come with a car and took Frank to the mall. The only problem was that she wore these spike heeled pink boots. She couldn't walk! One of the reasons Frank has this care is to get him out and get him some exercise! Then, on the way home, she was hungry so she ate Popeyes in front of Frank. Obviously, no common sense. The week she quit she never called. Frank was waiting at the front door for her to arrive. I called her home and they told me they didn't know where she was. Humanum should fire her from all their cases. Prader-Willi's don't like last minute changes of schedules. Gladys - the lady we had before - was so wonderful. I'm sorry we had to lose her. Lisa is good, though, too. She's not coming today because of Easter, but she'll be here next Sunday.

5) Another worry - Toni's husband Joe died suddenly in early February. Toni is someone that can watch Frank. We take him to her house for school vacations and it works out pretty well. She feeds him a little too much, but at least he is safe. She said something the other day about selling the house and moving back to NJ. What would I do without her? I can't leave Frank alone. I don't know of anyone else that can watch him for a day. I'll have to figure something out.

6) Oh, at least some good news, after calling social services many many times... Frank finally has his medicaid card. Finally. Even though he is covered under our medical insurance, he needs the medicaid card for lots of services. Another bit of news - Frank has a B in geometry right now. That's the last class he has to pass to get his diploma.

7:03pm: Shoplifting evidence
Two recent episodes -
1) Yesterday morning we were all getting ready for work and school, Rachel was in the living room and got up to see Frank going over to the coffee milk to drink it. She said for him to stop it and to leave the milk for the coffee. She also called him a a--hole. Frank got very upset and started yelling and throwing things. He broke a travel mug. I told him to calm down, but Cyr was yelling at him and it was crazy. I told Rachel not to call him that and not to set him off on a Monday morning. I wound up giving him a tranquilizer and getting him off to school anyway. Cyr and I went in a little late because we wanted to make sure he got off.

2) Today, Cyr told me that he found an empty can of almonds in Frank's room. Frank admitted to shoplifting it from Safeway - on his own - he walked over there after school, stole it and came back home to eat it. He said he hid it under his coat. I talked to him a little more about it and he also admits to stealing money from us and then going over there to buy food. No wonder he weighs 220 pounds. It's impossible to keep the money locked up all the time. We just can't do it. It's also bad that he spends two hours a day unsupervised. Who knows how many times he's gone to one of the fast food restaurants, or the chinese buffet right across Rt 3. Not to mention that it's not that safe to cross Rt 3. It has no cross walk.

Plus one other thing - yesterday he said that three or four times he started feeling real hot and then like he was going to pass out. I wonder what that could be?

I want him in a group home. Now. It's the only way to keep him alive.

By the way, here's the Christmas picture of the kids from December:

7:49pm: The Quiznos fight last night
Last night I had a lot of trouble with Frank. The teacher from school called me during the day and said that their outreach program was going to go to Quiznos instead of Subway or McDonalds. I said that was fine that I would get with Frank in the evening and decide what he could have and email her.

So in the evening we pulled the menu off the internet and Frank asked if he could have the bbq sub (of course he wouldn't pick a salad or a light sub!) . I said ok as long as he had a small one. He said no he wanted a regular size. I told him that they were really filling and that he really didn't need the regular size. He wouldn't budge. So I said no chips. He said he always gets chips at Subway. I said the subs were smaller. He ran off yelling and screaming and went into his room. He was cussing me like crazy! The things he called me. Fat b___h. F__ing b___h. You get the picture. He kept on asking why he couldn't have a normal meal. I said it was because he is 80 pounds overweight!!! He yelled at me for calling him fat. I gave him a tranquilizer to get him to go to sleep. I needed tylenol to get to sleep myself.

This morning I gave in. I said he could have the sandwich and chips if he just had a salad for dinner. He agreed. I had to go to work and I didn't want them calling me in mid-morning to come get him when he had a fit. I'm so blackmailed.

The worst thing about it was that they wound up not going to Quiznos at all. It was temporarily closed for remodelling. So they went to McDonalds. He had a salad and an ice cream cone. All that mess for nothing.

Found in his room yesterday afternoon: an empty can of cheese whiz, an empty box of fruit snacks, several american cheese wrappers, several cinnamon crisp cereal bar wrappers, and some other unidentifiable wrappers and trash.

Found in his room tonight - a small back (empty) of sunflower seeds, an empty ramen noodle soup wrapper, a small utz pretzel bag. Plus his pencils and pens were all over the room from throwing it last night when he was mad at me.

He's home by himself for two hours every afternoon and somehow he finds this food. I haven't bought any of the above items myself - except for the ramen. He must be stealing it or stealing money and buying it.

9:23am: This past weekend
Frank had a pretty good weekend all in all. Rachel and I went to Rutgers to visit their meteorology department and left the boys home alone for Friday and most of Saturday. I got home in time to pick up Frank from bowling and when I got there he was acting a little crazy. He had not taken his meds that morning. AAGGHH! He wasn't too bad. Actually when he misses the adderall he usually sleeps really well.

Sunday he went to early mass with Cyr, went to Baltimore with Gladys and got a foot rub from me. He's also been playing tons of Mahjong on AOL. He loves that game and it can keep him occupied for hours and hours. It's great.

He keeps on gaining weight. Don't know what to do about that one. It's from stealing and sneaking, because we feed him about 1500 calories per day only.

8:38am: Frank on a cold October morning
This morning when I woke Frank up I found the following under his bed:
Half of a loaf of French Bread (wonder why it wasn't eaten??)
An empty box of pop tarts. Size large.
My unsweetened cocoa from the pantry.

He wasn't happy when I asked about when he got them. I figured it was last
night since the bread wasn't all eaten.
Weight is 210 as of yesterday.

I left and he still was not dressed. Cyr told me he was telling him to put
on a coat and long pants since it was 34 degrees. Frank was only
interested in getting coffee and pulled the front door open so hard that
the door knob came off. He went to school in shorts and a t-shirt. No
coat.

AAGGHH!

8:06pm: Back from vacation
Frank finally got SSI! Yay! After two years of appeals. Plus they are going to give us back payments to when we first submitted the application. I have to keep records of how the money is used. Will call Leisl for suggestions. I want to pay ourselves back for all the child care and camps we've paid out the nose for the last couple of years. Very expensive.

Anyway, the beach was stressful this year. Either Cyr or I had to be with Frank at all times. When we left him alone, he would get into the frig and eat. We didn't have that much around, but that didn't stop Frank. He ate the pickle relish for the hot dogs, for goodness sakes. Maybe next year we won't take him for the whole week.

This morning we took him to Toni's - no camp or school for two weeks, so we need to take him every day. Tonight he looked ok when he came home, but just now his stomach is super extended like he just had some big binge. I looked for evidence and didn't see anything but it looks like he just ate a ton of something. One of these days he is just going to kill himself.

Here's a picture of him from vacation. I love this picture. He's so relaxed, just hanging out, watching tv and drinking coffee.

7:48am: Frank's weight
I've been weighing Frank every day because he is looking so heavy to me. Yesterday he was 199. Today he was 201! I know there was a lot of food at the party on Sunday, and he's probably eating too much at Toni's. I really can't do much about it. I've been taking him out for a walk every night after dinner, but he can only handle about a mile right now. His stomach is so huge. I hate the thought of him going to camp right now. As long as they keep him from gaining.

7:25pm: One more thing I forgot from week before last
On Friday, June 4 the cbi group at school was going to six flags. Frank had worn his quick drying shorts and brought a towel so that he could go on the water rides. Well, when they got to the park, it was too cold and Mrs. Holmes was telling the kids that they couldn't do water rides. Frank got all upset. Mrs. Holmes called me at work and asked me what she should do. I thought she just wanted me to back her up, so I said to tell him he can't do the water rides. He took the phone and was begging me to let him do the water rides. I said do what your teacher says. So Frank takes the phone and throws it. It breaks. We have to send Mrs. Holmes a check for $100 so that she can replace it.

He's being so unreasonable lately. Nothing can change. Nothing. Or the people who or around him get it big time.

I can't live like this anymore.

7:21pm: Walmart fiasco
I was thinking of taking Joe up to Spalding this evening for a summer band session, and I mentioned it to Frank earlier. I said we could maybe go to Walmart while he was in band. Big mistake! Joe didn't want to go and I just had no energy tonight and so we decided not to go. Frank couldn't handle it. He is still crying. He is still trying to get me to take him somewhere. He threw his pencil box across his room and is using such foul language it is unreal. Cyr wants to take him to the police station. I just want him to settle down. I gave him two tranquilizers and am praying they kick in soon before Cyr loses it or Frank really destroys something.

What a mess. Never tell him any plans!! Never....

3:41pm: Email from yesterday
I got this email from Cyr yesterday afternoon. I had been in meetings all day with tons of stress.... Frank is not doing too well lately. There have been several incidents in the past week or two. I'm hoping it's the end of year stress he feels every time school ends.

From: Cyr
To: Anne
06/09/2004 03:12 PM

Subject: Frank


Rachel called.

Frank Took some yogurt from the Cannings.

Grandfather caught him. Asked why he did it. Put hand on Frank's neck.

Frank got belligerent. I don't know if they asked him to leave or not.

Frank came home. Started throwing things.

Left the house, Kyle went and got him.

He is home now and calm.

I talked to him, did not yell.

Can't wait till he is in camps - or a group home - or somewhere.

9:34am: Fit on Tuesday night
We had a big problem with Frank night before last. Rachel made a cake for her softball team dinner. She had left it on the counter to cool. Now, grant it, she might have left it there too long. I went downstairs to get something and I spotted a sheet of foil on the floor under the couch in the living room. It looked like the same size as Rachel's square cake. I knew what had happened as soon as I saw it. Frank had stolen the cake and eaten the entire thing!!

Rachel got mad, Cyr got mad, and there was a big blow up. Cyr told Frank that he would not be allowed to go to his pizza bowling party on Saturday. Frank threatened to kill himself. Rachel says "You'd kill yourself over a pizza party? How stupid is that??". Cyr said, "Fine, go ahead and kill yourself. It'd make our lives easier." It just got worse after that. What a mess. I don't know if Frank is going to go to his pizza party tomorrow or not. I hope I'm not around whatever happens.

Oh, Frank also threw his TV off the stand and broke it. Who get's punished with that? Frank gets punished by not having a TV, but we get punished also, because Frank won't have something to occupy his time. He'll want to take over the basement TV or something and it'll be a fight with the other kids.

I wish he would get in a group home. I wish it would happen real soon.

7:24am: Frank at the red cross
Frank has regularly been giving blood whenever our church or his school has blood drives. I think he does it because he gets snacks afterwards. You know, cookies and juice, stuff he wouldn't normally get in the middle of the day. I let him do it because it's a good thing to do to help others.

A month ago he got a call from the red cross about giving platelets. I guess platelets really help for treatments of people with cancer. We made an appointment and I took him there last Sunday morning early. He had to be hooked up to a machine for over an hour, but he seemed to enjoy the attention from the nurses and everything. I can't help but think philosophically about it. Everyone has a reason for being here on this earth. Maybe Frank's platelets will save someone's life. I was really proud of him.

Still no word on the SSI appeal. I sent in a daily activities list recently. I was much more honest than the first time. For example - if not supervised, Frank will steal money and buy food. He will steal food from the neighbor's homes, etc etc. I also sent in a form that allows me to find out what is going on with the SSI. Seems like we should hear something from them soon.

8:42am: Thanksgiving
Once again, the family had to spend Thanksgiving apart. I stayed here with Frank and Cyr took the other kids to Farrell to spend time with his family. Frank and I had a pretty good time. We went to my sister's house in Virginia for Thanksgiving dinner. We stayed there about five hours and of course, there was food out everywhere. Frank ate non-stop for most of that time. For a while we got him interested in a solitaire puzzle which helped for about thirty minutes. After dinner, everyone was hanging around the dining room table talking and I had to spend that time hanging halfway in the dining room and halfway in the kitchen so that I could make sure Frank wasn't eating anything more. He kept on coming back in and trying to get more food. It was difficult. We left before anyone else.

He weighed 195 this morning. On Thanksgiving morning, he weighed 196.2. He was at Toni's last week and always gains weight at Toni's. Still, I have little choice. I can't leave him home alone when I have to work. He didn't have school and I had to work.

Oh, we also got a call from Heather Rounds. DDA wants a copy of Frank's denial from Medical Assistance. I never got a denial from Medical Assistance. He was denied SSI, and when I looked up what he needed for Medical Assistance, it was obvious that he would not qualify, since we are too wealthy. I wonder if that will keep him from getting the services that are supposed to start on January 1. Probably, knowing my luck.

7:39am: A new issue
Lately, we've been discovering evidence of Frank sneaking food that we don't usually buy. Turns out he's been stealing from our neighbor, Terry, who has a refrigerator in her garage. She also keeps some canned goods stored in the garage. The other day, I saw Frank walking in the door with something stuffed under his shirt. It was a cold loaf of bread. It took a while to get the information out of him, but he finally told us he got it from Terry's garage refrigerator. I immediately took it back to her, and she confirmed that she had just bought that bread.

On Sunday, we found three empty cans of bushes beans in Frank's room. Over 1500 calories worth. Not a brand of beans that I buy very often. Cyr eventually found that it was from Terry's garage as well. Of course, this was after much going back and forth and lying etc.

We are trying to tell Frank that this is breaking and entering and stealing. A homeowner could shoot him! It happened last week in our county that someone shot a burglar on his propertly. We asked Terry if she would press charges and she said she did not think she could do that. But she will write up something for us to keep with his files.

When Frank wants food, nothing will stop him.

1:09pm: Imagine Article from the PWSUSA newsletter
I found this article so moving. It is so true and so sad. Makes you think.

Prader-Willi Syndrome Newsletter Article
By Teresa Kellerman 1/29/1997

IMAGINE... what it would be like if you were born with Prader-Willi Syndrome.

Imagine that your desire to get food is so strong that you would do ANYTHING to get it, even crawl out of your bedroom window in the middle of the night to walk to the store several miles away.

Imagine that you are hungry all the time, and that you are on a diet, all the time, and that you can only eat about half as much as everybody else, not to lose weight, but just so you don't gain weight. Imagine that if you do gain weight, you will have to go on an even stricter diet, getting about as many calories in one day as there are in just one cheeseburger and fries. Boy, would you like to have a cheeseburger and fries! But that's not in your diet. You are told that your diet is very important, because if you gain weight you could get really sick and die, because your heart can't handle the burden of obesity.

Imagine that everybody in your group is going on a hike, and you want to go to, but you know you will get tired easily, because you muscle tone is not really good, but you don't want to be left behind, so you go along, and it's really hard for you to keep up with everybody. And when you stop for lunch, the person next to you has a big sandwich with mayonnaise and cheese and roast beef and five cookies and potato chips, and the person sitting on the other side of you has 3 granola bars and trail mix with nuts and a candy bar. And you have two skinny slices of diet bread with mustard and a thin slice of ham, and a rice cake, and a teeny apple. You think that candy bar looks really good, and you watch that candy bar, because maybe it will get set down, and maybe you can get your hands on it, and maybe it would taste soooo good, and you can't think about anything else but that candy bar.

Imagine that you find a $20 bill laying on the ground, and you pick it up and put it in your pocket and don't tell anybody, because maybe you can buy some candy bars with it some time when no one is looking. But you get found out and you are accused of stealing, and nobody believes that you just found it.

Imagine that when you see a scab on your arm, you just have to scratch it, you can't help it, you just have to! And when it bleeds, you get in trouble. And you try really hard to leave it alone, but you can't! And sometimes it takes over a year for sores to heal.

Imagine that when you want something to eat you have to ASK, and then you usually get told NO or you get carrot sticks, and you can't eat what you want because there is a lock on the refrigerator and on the pantry too. But you know if there were no locks, you would get more food, and gain weight and get sick. So you really don't mind if the food is locked up. At least you don't have to worry about getting food like you used to before there were locks, and you would wait until the middle of the night to get up and go get food without anyone knowing. You feel safe with the food locked up.

Imagine that there's something you like to do and you're really good at it, like working jig-saw puzzles. And you have one that is a THOUSAND pieces, and you've been working on it for days, and you want to put it together all by yourself, because it's YOUR puzzle and you know where all the pieces go, and then someone else puts pieces in for you, and you take it all apart to start over, and you get yelled at, and you are told you are STUBBORN, but it's YOUR puzzle, and you just want to work it yourself.

Imagine that you are going to the movies, and everybody else is getting popcorn and candy, but you can only have a diet pop, but you have to sit there and smell everybody else's popcorn and chocolate, and watch them eat, and hear them munch. You really wish you could have a giant tub of popcorn like that guy over there! And you see a piece of popcorn that someone dropped and you pick it up and someone tries to grab it from you but you are faster then they are and you eat it, and they get mad at you, but it was worth it because that one little piece tasted so good. Better than the air popped stuff.

Imagine that you have a hard time expressing your feelings and get mad easily, but only when things aren't fair. Only when someone breaks a promise. Only when you're not getting what you think you need or deserve. Imagine that when you can't say what you want to say and when you scream and hit. You wonder why you get in trouble for hollering when everybody else is hollering too! Or sometimes you just sit and REFUSE, and nobody can make you move. You know you feel better when you take your medicine, but you don't want to take you medicine. You don't know why, you just don't want to take it. When you refuse to take you medicine, you get in trouble. But when someone in charge forgets to give you your medicine and you lose control, then you are the one who gets in trouble.

Imagine that you have family and friends who understand you. Imagine that your teacher, your case manager, you care provider, your doctor, all understand PWS. They know you are different, but they know you are special too. Imagine how lucky you would be!

DEFINITION
Prader-Willi syndrome (PWS) is characterized by decreased fetal activity, obesity, muscular hypotonia, mental retardation, short stature, and small hands and feet. Prader-Willi syndrome is considered to be a dominant disorder and it is typically caused by a disruption or a deletion of a gene on the arm of chromosome 15. One in 12,000 to 15,000 people suffer with PWS. People with Prader-Willi syndrome rarely live past 25 to 30 years of age. The cause of death being cardiac failure and diabetes. People with PWS have a better chance for survival if strict weight control is achieved. PWS patients have been known to score better on visual motor skills than on auditory verbal processing skills. Adolescents with PWS suffer from psychological and behavioral problems, which are due to their obsessive compulsion to food (i.e., repetitive thoughts on hoarding food). Physical characteristics are characterized by a narrow bifrontal diameter, almond-shaped eyes, and small hands and feet.

8:27pm: Emergency room tonight
Just got back from a trip to the emergency room with Frank. Earlier this evening, he was at the neighbors playing with their dog. I guess he realized it was nearly dinner time, so he got up and ran to the side door by the garage. He tripped over the walkway and fell flat on his face. He scraped his legs, elbows, and got a big gash in his chin. The neighbor kept on asking if he was ok, but he said he had gotten his breathe knocked out of him and could not speak.

He finally came into the house and said he needed a bandaid. Cyr was busy fixing dinner and did not stop to help him. He came up to me and showed me his chin and said "I'm bleeding." He sure was. I took one look at it and said "We need to go get you stitches." But first he had to eat. Dinner was ready and you know what comes first.

We went to the nightime pediatrics first and they said that they couldn't do stitches until after 8pm. So we drove to Bowie. Got there about six and we were out by 7:30 so it was not too bad. Frank was in pain, but he still flirted with the staff and joked with them. They gave him a tetanus shot because of the depth of the cut. His last one was in 1995, so he was due.

Frank was a trooper. They gave him five stitches, but the worst part was the novacaine shot. He's gotten more stitches than any other of our kids have.

7:32pm: SSI Appeal and the crises packet
I was just spending some time reading a packet that David W. sent me from the PWS Association to help with the appeal of SSI for Frank. I'm not sure what to do with it all. If I were to guess, I think I need to write a cover letter and send it with all the information to the Social Security Administration. I know that I need to have the letter in before September 15 or 16. Some of the information that he sent was just so disturbing, like the picture of a 21 year old girl at 385 pounds. She died shortly after the picture was taken. Then there was the story of a kid who died because he snuck a potato and ate it whole. It got stuck in his throat and they did surgery to remove it, but he went into a coma and died four days later. I tell you, I've been so afraid that something like that would happen to Frank at some point in time. I mean, when I find chicken bones in his room, because he's gotten them out of the garbage and has eaten every last bit of meat off of them, and some of the bone, too. You don't give a dog chicken bones. They could splinter and choke the animal. What about my son? Could they splinter and choke him also? I'll call David tomorrow and find out what step I should take next.