Freakin Friday - I hate weekends

School today.  Hooray.  I was trying to see how many days Audrianna had gone to school in the past four weeks and I think it was 3 days.  Too much sickness and snow in the past month.  I am hoping that things will get back to normal now.  I can tell it has taken its toll on me.  I have been so depressed and short-tempered.  All she wants to do is eat, eat, eat.  "My tummy is hurting".  That is even worse to me than "I'm hungry".  Because then I have to remember that it is painful to be starving.  The more depressed I am, the quicker I am to let her eat.  I try to keep it to a minimum and low cal but the last few days I have just been too ill myself to care.  So to make up for it, we had salads for lunch and dinner to offset those in between meal snacks.  We both enjoyed the salads and that was a plus.  She even helped me make the lunch salads.  Well, she watched.  We tried garbanzo beans, beets, shredded carrots, 1/2 hardboiled egg (white only) and sugar snap peas yesterday in her salad and she liked it.   She wondered who made the beets "pink".  They were actually deep dark red (the normal color of beets) but she seemed to think they were pink.  

I have been feeling like a failure and I am trying to remember that it is just the stress of being trapped in the house for all these days with minimal contact with others.  I feel like I am in solitary confinement.  The more I stay in, the harder it is to go out.  I feel I am becoming a recluse.  It is just easier to stay in but not necessarily healthier.

I do have an IEP meeting on Monday morning that I will be going too and for the first time ever, I do not dread it.  The new teacher makes all the difference in the world.  I am very happy with how things are going for the most part.  There are a few things I need to mention about things the assistant has said but nothing that cannot be managed easily.  

I tried pink text today to see if it could cheer me up.  Maybe a little, but the Warm Delights brownie I just cooked in the microwave and ate probably cheered me up a little more.  Warm chocolate and a glass of milk.  Delightful.  Makes me feel cozy and ready to lay down.  Might as well, Audrianna has been asleep for an hour.

This is just rambling and I am sure nobody is interested in the ramblings of an old woman but tonight thats all there is.  I really wish there was a community for us.  I really need to live close to people like me, with a child like mine, who I could visit once in a while, and my child could play with someone like her.  I wonder if there would be government funding for such a thing, some kind of apartment building just to start out.   I know it wouldnt work out for some families, but I think there are others that it would.  

More rambling.  Gotta go.  Goodnight my friends.

Janis

SUPER BOWL SUNDAE

The super bowl is on and I just ate some ice cream so I spelled it Sundae instead of Sunday.  HAHA.  I crack myself up.  I am not watching the game.  I tried to watch the halftime show but it was boring.  I keep missing the commercials.  I saw the YouTube video of the National Anthem getting messed up.  I guess I'll go back to the Law and Order marathon.

I am praying for no snow tonight so she can go to school tomorrow.  Being cooped up in this house for 23 days has worn on me.  Getting out today was good.  Went grocery shopping but shelves were pretty bare.  Stocked up on meat (just in case we get snowed in again).  Lucked out and got the last dozen eggs in town I think.  (Technically only 10, there was one missing from the carton and one was cracked but hey, I had been to 5 stores and hadnt found any and this was the last carton on the shelf).

I bought the wrong size Goodnights and that upset me.  Now I have the jumbo pack of the wrong size.  I bought some small Depends to wear over the Goodnights so I guess I will tear the goodnight into some kind of pad and place in the Depend.  I cant think of anyone who could use them.  Her dad was supposed to buy her some Goodnights today but he disappeared.

Well, I'm off to lay down and watch TV.  Audrianna woke up at 4 a.m. today and went to sleep at 6 p.m. so I am sure I am in for another early rising.  I would love to go to a hotel for 24 hours and sleep straight through.  Oops I just remembered I forgot to feed and water the dogs.  Dang, my memory is awful.

I am rambling and I know it is boring, so goodnight everyone.  I hope your team wins.


Janis

MONSTER MOTHER

I HATE SNOW DAYS, SICK DAYS, VACATIONS AND HOLIDAYS OF ANY KIND. There, I've said. I hate it when my child is home for 24 hours a day for more than 2 days at a time. She has been home 19 of the last 20 days due to illness, snow, oversleeping (once). We are stranded inside because the wind chill factors are below zero. Cant even go outside to play it is so cold. We are eating crap food because we ran out of healthy (mostly). I made chicken and noodles last night using legs and thighs that I have had forever and was never going to use. We even had mashed potatoes and pea salad. Fat, fat, fat. Someone brought me a package of ground beef yesterday but how would they know I only buy super extra lean ground beef and they gave me that 70/30 crap. I could rinse the fat off if my hot water worked. It is still frozen. The snow in my living room has not melted yet. All day long, all I hear is I am hungry. Well darn it, I do not feel good. My thumb still hurts, I have a headache, you wake me up at 3 in the a.m. and do not go back to sleep. You ask me questions while I am trying to go back to sleep and in my stupor I think I have answered you but that is only in my head. I have not actually spoken. So you scream at me. So I try to mumble the answer as best I can although I am EXHAUSTED. I lay in bed until 9 a.m. in this stupor of not sleeping, but not really awake, and every now and then I hear - my tummy is hurting me - so I hand you a piece of a blueberry muffin that I have under my pillow for some reason. I have the bottle of spray margarine in the window sill and I spray it twice. This happens about every 30-45 minutes until I finally get up and put the rest of the muffin away. Now I am up. The inside of my mouth feels raw and hurts, like I burned it on something. I am sick of Dora, Diego, Ruby and Max, Barney, but most of all myself. Why don't I want to play games with her. We have them. Why don't I want to read to her? We have tons of books. Why don't I want to do anything but lay down and cover up and be left alone? I feel like a monster. BUT even though I feel this way, yesterday she looked at me and said "Mommy, I'm glad you aren't like my daddy". So even though I feel like a monster, she knows who the real monster is.


So I will sing the song from Annie "The sun will come out tomorrow......." and hopefully it will, the snow will melt, she will get back into the routine of going to school.  That will be a chore.  She has been home for so many days, she won't want to go back.  I feel for the teacher and the staff those first few days and for me on those mornings when I am again playing the cheerleader, trying to think of a million reasons she needs to go to school; her friends miss her, she has to learn, it is the law, etc.  


Actually, the sun is out today but doubt it is warm enough to melt anything.  Just got a phone call from the guardian of Marissa's best friend.  She was just checking on me.  That in itself brought me to tears.  She is bringing me some toilet paper.  A necessity that I am almost out of.  So now, I am tearful and depressed.   So I'm off to watch TV.  Cant do much cleaning with just one hand although I am trying to clean an explosion in the bathroom right now.  Poop everywhere.  I think it is time for the serenity prayer.  


Peace, Love, Dove,


Janis

CABIN FEVER

This is just a quick note.  Audrianna was ill with diarrhea on Friday, January 14, was home for the weekend 15, 16, and the 17th was a holiday.  She was ill the entire week (17, 18, 19, 20, 21) and then was home the weekend 22, 23, home on the 24th, and finally back to school on 1/25/11 (her 10th birthday).  Woke up on the 26th with diarrhea again, was home today, too (the 27th).  She has been to school one stinking day in the past two weeks.  I have also been ill with the same stuff (but only for two days and add vomiting to my experience).  Then I woke up Saturday at 4 a.m. in excruciating pain from an infected hangnail which required a trip to the emergency room for an incision and drainage. I have been in pain ever since.  ER doctor said it would heal quickly, in 2 days.  I have been back to my doctor (not the ER) and had it re-drained and it is still so painful.  Still bleeding.  Just gross.  So these two weeks have been ABSOLUTELY HORRIBLE.  I am at the end of my rope.  Then to top matters off, Audrianna's dad is here this evening visiting and all of a sudden he starts screaming at me about my oldest daughter who is visiting her boyfriend in Alabama.  She graduated from high school early (in December).  Her boyfriend is attending Alabama A&M.  He lives with his mother and her husband.  Marissa's plan is to return to Lawton so she can go to prom and walk across the stage for graduation in May.  Then she plans on going to the local university.  Tay keeps screaming that I let her "shack up".  His reaction to this situation is bizarre.  Its not like he is father of the year or anything.  Granted Marissa is still 17 but she is so smart and has such a good head on her shoulders, I dont see any harm in her visit.

So anyway, I am getting ready to go to bed.  I am PRAYING that Audrianna goes to school tomorrow.  I am tempted to send her with a disposable sleep panty on just in case.  I need a day to myself, to take care of myself.  I am tired.  It shows on my face.  Everyone who sees me comments on it.  I am worn out.  I have been for the longest time now but it is getting worse.

Does anyone else's child have a hard time getting rid of diarrhea.  I sometimes wonder if it is because they don't throw up so they don't get rid of the "bacteria or virus stuff" as quickly as they would if they could throw up.  The "bug" has to travel through their entire system.  I have no idea if that makes sense but she sure has had a hard time getting over this.

Her aunt put two French braids in Audrianna's hair this evening with some barrettes she got for her birthday.  I could only get one picture to go through when I sent it from my phone and it has something wrong with it  but you can see the braids.

Janis

3D Day

Three D's for today:

1. Dentist.  Took Audrianna to the dentist today to get her cap put back on one of her teeth.  Her teacher called me last Thursday to tell me the cap had fallen off her tooth.  I asked her if maybe the tooth had fallen out but she said no, it was definitely just the cap.  She sent the cap home in a baggie in A's backpack.  I called the dentist and made an appointment and stuck the cap in my purse.  Her dad checked in her mouth and saw part of a tooth and I informed him that she only had little pegs left after they removed all the decay.  Well dummy me.  It was her entire tooth that had fallen out.  The permanent tooth pushed it out and you can see the permanent tooth.  I just took the teacher's word for it and never checked for myself.  What is wrong with me? Just what I wanted to do this morning, get up early on a "stay-home day" when Audrianna was not feeling well and  be at the dentist office at 7:50 a.m. to be worked in.  Fortunately we were out by 9.

2.  Diarrhea.  Audrianna is sick today with diarrhea, not so much frequency but liquid bowel movements.  But she definitely does not feel good.  Just laying around and NO APPETITE.  She still wants her meals but she just lays the plate on the bed next to her and looks at them.  She has a little bit of fever, too.  She is definitely not herself today.

3.  Daddy.  Today, she wants her daddy and he has actually stepped up to the plate today.  He is here right now, spoon-feeding her some jello and giving her something to drink.  Every once in a while he redeems himself and does something good and nice.  I told him knowing him was like riding a roller coaster.  When he is good, he is very good, but then he plunges down to bad, and the ride downhill is not fun (nothing like a roller coaster) so maybe I should rethink that comparison.  Unfortunately the good never outweighs the bad.  But bless her little heart, she loves him no matter what.

So now I am going to lay down next to my sick little girl and snuggle up with her.  Goodnight everyone.  The tooth fairy better show up tonight.


Janis

GOODBYE TEACHER

Many of you who know us, will remember that Audrianna was having some pretty serious problems at school.  These problems improved overnight when she got a new teacher.  Ms. Hodge is a dream.  I will not mention her previous teacher by name but we are so happy she is no longer teaching Audrianna's class.  Today, I was in the living room and found Audrianna's class picture from last year torn to shreds.  I was upset at first but went in her room and asked her why she did that.  She said "Those teachers were mean to me, they hurt me, so goodbye teachers."  I did not scold her for tearing up the picture.  I thought it was a good way for her to express the anger she must have felt for being so mistreated at school.  No child should have to go through what she went through. Seclusion, restraint, isolation, bruises, belittling comments.  Last week when I took Audrianna to school after an appointment, she went up to the computer teacher and asked for a hug.  The computer teacher looked at me and then said "No, I cannot hug you."  I looked puzzled and asked why.  Audrianna's former teacher had told everyone at school (adults) that I said no one was allowed to hug Audrianna.  I was furious once more with this teacher who is long gone and out of state.  I reassured everyone that I had never said that but one assistant still refused to hug her when she asked for a hug.  I left a note for the principal telling her and she said she knew I had not said that and she would clear the matter up with all the staff.  

FYI:  Audrianna loves to give hugs and last summer at camp, they gave her an award as best hugger.  This was a new category just for her.  She gives awesome hugs and is a loving child.  I think our kids with PWS are great huggers.  

Pink Boots and High Anxiety

Audrianna got some pink boots in the mail the other day along with two pairs of tights and a long sleeve shirt. She is modeling one outfit in the picture. The boots are a big hit. Pink is definitely her favorite color. We are very fortunate to have such generous friends.

Today, she is home sick (and wearing the pink boots with her sleep shirt) with an intestinal problem. I am trying to put it delicately but there is nothing delicate about diarrhea, especially in a child who has trouble making it to the bathroom quick enough. Needless to say, my morning started out badly. Cleaning poop off her, the bed, the pillows (she was trying to crawl out at the head of the bed). My motto is "It's always about the poop."

All the time I am cleaning, she is crying, afraid that I am mad, upset or disappointed. These are her three words she uses all the time. "Are you upset with me, mad or disappointed with me?" She asks this question a lot. I feel so bad for her that she worries about this. I know she asks if other people are worried, mad or disappointed with her too or I would really feel guilty, like I had given her a complex. I blame it on the high anxiety associated with PWS. She sees a mental health therapist once a week and she is trying to help her deal with some of this anxiety. Right now Audrianna's biggest worry is that I am going to die while she is still a kid. These worries are not unfounded since I almost did die this summer and I am recovering from that still. I try to reassure her but I have a hard time promising that I won't die before she is a grownup. I come as close as I can without exactly promising. I guess this is my biggest worry, too; and it is probably affecting us both. So her counselor recommended I get some counseling. Probably not a bad idea.

Well I've got to go, she is calling me.  .....

Janis