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

Beautiful Dreamer

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MAKE CHANGE, BEAT CANCER

My aunt and her husband are both battling cancer.  My Uncle Howard is not doing very well at all.  He has hairy cell leukemia and his blood marrow has quit producing blood and platelets.  He is living on "borrowed blood" according to my aunt.  He has to undergo blood transfusions.  My Aunt Audie (Audrea Ann - who Audrianna is named for) has breast cancer and underwent a lumpectomy and has to have 4 more weeks of radiation.  She has to travel out of town for the radiation, not too far, but far enough, especially in this snowy weather.  Her daughter will be staying with my uncle (taking time off work 2 hours a day) to sit with her dad while her mother goes to radiation.  I am only telling this story because they mean the world to me.  I love my aunt like nobody else.  She has loved me unconditionally even when my own mother did not.  She took me into her home on more than one occasion and let me live with them when my parents changed the locks on their door and told me to never come home again.  She let me hide upstairs when my father came over to collect any presents they had ever given me so that they could give them to my younger sister.  There are no words to explain how much she means to me.  Whenever I talk to her on the phone, I feel like a little girl.  When I feel down and out, all I have to hear is her saying "I love you honey" and the world is good.  I live in Oklahoma, they live in south central Kansas, a 3 hour drive from here, but if I had a car I would be going to see them as often as possible.  I even volunteered to move back to take care of them if they need me.  I would do anything for my aunt, all she has to do is ask.

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).

LEARNING TO READ

I am a fanatic about reading.  I love to read.  I always have.  When I was young, my mother had to insist that I put a book down and go outside or I would have stayed on the couch reading whenever I had spare time.  I got in trouble at school for reading.  I would open my textbook and hide the book I was reading inside of it and read in class.  When I got in trouble once at home, I told my mother if she really wanted to punish me, she shouldn't let me read anything for one week.  I love to read.  I don't get much of a chance to read anymore.  I usually stick to children's books or young adults because I can finish them quickly.  If I read a longer book, I usually have forgotten the beginning of it by the time I get to the end, if it takes me more than a few days to read.

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.


Janis

Too Emotional For Words

All I have are tears and a million mixed emotions right now.  Cant explain, too tired to type.  Audrianna is asleep and well.  That is what matters more than anything.

Prader-Willi problem solving & solutions exchange

I have been trying to figure out how to add Prader-Willi problem solving & solutions exchange on my blog as some kind of badge or gadget or whatever the correct word is.  For those of you who don't know about this exchange, let me tell you a little about it.  Prader-Willi problem solving and solutions exchange is a facebook page and I am one of the administrators of this page, along with Ali and Misty.  We have 766 people who follow this page, where anyone in the PWS community can post a question, a solution, a good idea, and get responses from others.  It is a wonderful facebook page.

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.


Janis

Blogging Exercise 101

Okay, I am going to see if I can get this to work.  I am going to try to attach a photo and also see if I can get it to show a link on facebook when I post this.  So here goes.

DAY 2 of NEW YEAR

Tomorrow is the big day, at least for me it is.  Back to school after a 14 day vacation.  Audrianna is not too excited about it.  Already came up with an excuse the other day so she wouldn't have to go on Monday.  She told me that she didn't think she would be able to go to school on Monday because her bottom would hurt if she had to sit for too long.  Have to give her credit for originality on that one.  This morning she was starting to make excuses again, when all of a sudden she remembered something.  The bus monitor used to read books to her on the bus and then quit for some reason, but she told Audrianna, at some point in time, that she would start reading books again after Christmas.  Audrianna jumped up and I had to find her bag of books.  She has had it packed for quite some time.  Now it is sitting with her backpack all ready for tomorrow morning.  I hope Miss Donna, the bus monitor, remembers because Audrianna DID NOT forget.  

I would also like to say that the Melissa and Doug magnetic responsibility chart is a Godsend in this house. Today is the 8th day of use and she has fulfilled all of her responsibilities.  I have had to remind her but I think she is getting the hang of it.  She really likes getting the magnets.  

Now she is reading over my shoulder.  She can only read her name and she is bugging me so I am going to have to sign off today.  I told her this was my journal but she isnt too sure she likes me talking about her.  

Later,

Janis

HAPPY NEW YEAR

This past year is finally over although it did go pretty fast.  A new year ahead, full of promise, perils and pitfalls.  I am getting better at picking myself and dusting myself off, thanks to all of my facebook friends who have held me up along the way this year.  I just want everyone to know how thankful I am for all my facebook friends.


Peace, love, dove.......Janis  (I think this is a quote from Cheech and Chong)