Sunday, March 7, 2010

Days like these....

I have not been on because the PWS took over our home. Prader-willi syndrome has many facets. She is charming, everyone loves Tressa. She is smart but stubborn so people work hard and celebrate when she achieves academically, she is social which can draw an audience of her very own to entertain for quite some time...then there is the side that click in every so often and it is relentless food seeking, mean , temper provoking and down right exhausting for all the people around when this is in full force... PWS food seeking was the past 36 hours and I am not clear it has past.

I always know when my mind tells me to curl up in the fetal position and just pretend I am a baby and people need to tend to my needs I am going into stress over load...LOL The visual maybe holds me over because I push through it although the image of being taken care of feels good for the split second I have to envision it. LOL Make sense?? maybe not if you have not lived with this behavior. It means she is working overtime to get something in her mouth, hidden in her hiding places or just OCD high affect while you try to out wit what her next plan of action is. This means you have to be a peak performance and attention 24/7 during these times.. Not to mention the school has called for another child. You have your own circle of friends you are breaking plans with and the house needs maintained, normal every day things need managed... and it is YOU, for the most part all alone. Mandie did work yesterday and saw the moments as she commented the amount of focus on Tressa yesterday she felt while I took Jordan to ER for a possible stroke. Mandie was happy to leave and her plan was to stay i her PJ's Sunday watching old movies cuddled up with her family Thanking God for all she has.

Me, I got on the Internet last night focused on saving a little girls life, finding the little girl first, getting air flight in place, Doctors and Hospital secure and making that all possible.. forgetting about what lye's under my roof as it was a safe time to forget..Everyone was sleeping and food was locked up.

On might ask why not a bath in a hot bubbly jet...well it is cold, Stop laughing it is cold when it get in the 40's here and my bathroom is exposed to the outside so it is not pleasant when it is cold. Kory tied to fix my bathroom years ago and the end of the story is as most know.....Kory fixed my he fixed all the other things that bring on memories with a headache and frustration in my day...when I fill the dishwasher and it falls out of the cabinet...when I.... when I... some thing just are what they are mounds of frustration.

I look forward to better days and know they are only a day or two away. This morning she showed signs of backing down but did grab her brothers bowl of cereal because he doesn't drink all his milk and she felt it was hers even though he had his hands on it to take to the sink... She looses her mind in situations like that. She has tried to get a baby food jar of apples and blueberry's from the diaper bag when she couldn't open the lid (weak fingers) she broke the glass and licked the broken glass to have the food..scary... it is also equally dangerous taking things like this away from her. When I heard the glass break late in the night (she had stashed the jar for safe keeping) I went to her room and found her licking the broken glass. She was willing to grab all the broken pieces and shove them all into her mouth. I thought quickly and told her I would help her get the food off the broken glass...As I approached she was resistant but when I took a finger of food and presented it to her to lick off my finger she cooperated and I was able to get it and watch for what went to her mouth and actually got much of it away with out her eating. Explaining how dangerous it is at that moment is never good for her. Waiting until it is all over and going over safe ways to eat and about broken glass cutting etc...she is good when it isn't tat moment. It is almost like she is another person at that moment she is eating food off broken glass.

Well it is Sunday and everyone is having some TV time while we get ready for our day of therapy, the sun is out and I am sure some ball throwing is in the schedule. Next weekend should be warmer, possible get away. The weekend after, watch out Ranch time for the Pringle's, Emma will ride her first pony!!!