Thursday, September 1, 2011
Thursday, April 28, 2011
Sunday, March 20, 2011
Thursday, February 24, 2011
A soft, comfy easy fit with the most colors you’ll find anywhere, in tall plus sizes.
- Tunic length 32"
- Rib trim
- Elastic-waist, straigh leg pants
- Pants are 32" inseam
- Washable cotton/polyester knit, USA and imported
Soft as a cloud
Fit: Feels too big
Pros: Comfortable, Stylish
Best Uses: Cold Weather
Describe Yourself: Beginner
Was this a gift?: No
I thought it would run small to size but it was actually right on. I ordered a 4X and I could have done with a 2X probably in the pants. The top is great, and it is so soft and extra long which I love.
Friday, February 11, 2011
Sunday, February 6, 2011
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.
Wednesday, February 2, 2011
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,
Thursday, January 27, 2011
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.
Monday, January 17, 2011
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.
Sunday, January 16, 2011
Friday, January 14, 2011
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. .....
Thursday, January 13, 2011
Tuesday, January 11, 2011
Tonight I was discussing this situation and Audrianna overheard me. She was very concerned about their health and when I told her they both had cancer, she wanted to know if Uncle Howard could hold on until she got her money to him. I had no idea what she was talking about. Then she started explaining. Her school is having a fundraiser. Make Change, Beat Cancer. They are collecting change for leukemia research. She told me the only way she could get the money to him was to give it to her school and she hopes he gets it quick enough so he can be better. I love this girl. She took the sting out of the day.
I lost both my parents to cancer, my mother to ocular melanoma which spread to her liver and my father to lung cancer after he smoked 3 packs a day for God knows how long, all his life it seemed. I feel like I am going through it all over again.
My Aunt Audie and Uncle Howard (my 17-year-old daughter Marissa calls him Howard the Duck. He is quite the character).
Monday, January 10, 2011
One of the first questions I ask parents of children with PWS who are in school is "Can your child read?" Most everyone I ask says yes. Audrianna is in the 4th grade, special education, and can only read her name and she recognizes the word Apple in an Applebee's sign. For Christmas I bought her 12 Weekly Reader books with CDs and for her birthday, on Jan. 25th, she is getting 3 different reading systems, thanks to the generosity of a facebook friend of mine.
Right now she is listening to the Weekly Reader CDs and looking at the books. She is a little more concerned about keeping up with turning the pages but she is getting the hang of it. She is now listening to/looking at Curious George.
For those who don't know me from Facebook, Audrianna got a new teacher right before Christmas. Before that I had been considering homeschooling her because of all the difficulties with the old teacher. The new teacher is a dream-come-true and she is working on teaching Audrianna to read. It seems like the only thing the last teacher had been teaching was the days of the week and the months for the last 1-1/2 years. Audrianna requested that the teacher send flashcards home and she did, but apparently I don't know the right way to do the flashcards (according to Audrianna I have to have a piece of paper and draw lines through something). I must make a note to ask the teacher about this.
I also got some good ideas from another facebook friend of mine about cutting out words and putting them with pictures of what they are. That reminded me of the movie The Color Purple when Celie's sister put flashcards on everything in the house, etc., when she was teaching Celie to read. Why didn't I think of that? You will be seeing flash cards all over my house in the next week or so.
Well Curious George is over and I have to put in another CD, the third one so far. She is really enjoying this. So am I. A few moments of no questions asked. Wonderful.
Thursday, January 6, 2011
Wednesday, January 5, 2011
I have many, many facebook friends who are raising a child with PWS (mostly moms, some dads, some grandparents, recently a great-grandmother, some adults with PWS). Facebook has been a lifesaver to me. I was a member of a Yahoo PWS e-support group and one of the members invited me to facebook. I already had a facebook page but never used it. I thought it was kind of silly at the time. But I added Jennifer as a friend and took off from there. At that time, I barely had 30 friends and now I have over 600. Some I know better than others, but I feel like I know them all. They are my family now. They understand me. They get it. When I complain, they know what I am talking about. When I celebrate an accomplishment, they celebrate with me. They have wonderful suggestions and I have developed more self-confidence because I am armed with the information I have learned from so many others who have walked this road ahead of me. I no longer cry at IEP meetings. The staff actually listen to me now.
Audrianna will be 10 this month and I had never met another family who had a child with PWS until this past summer. What a life-changing event that was for both of us. Audrianna and I went to PWS camp here in Oklahoma. I went as her counselor although that was not required of me. A family I met on facebook let us spend the night at their house since we had no transportation to get to camp. We got a ride halfway to their house, they picked us up, we spent the night, they took us to camp and took us all the way home after camp. We live about 2 hours away from them. Their daughter is a few years older than Audrianna, her name is Audrie. The girls had a blast. I felt like I had known this family for so long even though we just met.
I am rambling now, not sure where I am trying to go with this. I do want everyone to know about the Prader-Willi problem solving and solutions exchange on Facebook. I cannot begin to describe how wonderful the sense of community and support is. I felt so alone for so long, I NEVER want anyone else to feel that way.
I'm off to clean the house, have a great day everyone.
Sunday, January 2, 2011
Saturday, January 1, 2011
Peace, love, dove.......Janis (I think this is a quote from Cheech and Chong)