Life Happens...............

Well.......in my last post I shared from my heart how much I looked forward to our Christmas trip we go on each year...........well, as soon as we arrived in Tennessee, I was sick.  Spent most of my vacation in bed because I felt so bad.  No snow..........no shopping.........I did get to see our relatives and visit some.  But the ritual stuff I was used to doing when I went, did not happen, I was so disappointed in how things turned out.

Isn't that what happens when we get things in our heads, we build them up till they can't possibly live up to the expectations of our expectations..........!!

I've also been told that we are using to many hours in our Medicaid Waiver, we are going to have to cut back the amount of hours we get help with Brad.
He doesn't sleep very well, and you have to almost be in his room every night for him to stay in there and sleep.  He has a cough, and when he coughs, he sits up in his bed and you have to be there and lay him back down pretty soon or he wakes up and won't go back to sleep.

I guess you can't complain........at least we get some help to keep him home.
I just can't imagine putting him in an institution........I just can't do it.  I have to know what is going on with him, who is working with him.......

Christmas in Tennessee.......coming soon!

I haven't really told anyone how much the trip to Tennessee means to me, it really makes my Christmas.

It always seems to snow duirng our trip, so at least once a year I can see some snow and hear Christmas music at the same time...........lol   Eveybody around you is smiling and happy........how can you be sad duirng this time.

I have lost loved ones at Christmas Time...my brother, Gary, died in a car wreck when he was 21 the morning after Christmas Day.  I refuse to think that Gary would want me to be sad and let that affect my attitude toward Christmas.  I do miss his smile and sense of humor.  His death really changed our family for a long time, but it has been better lately.  Mom's gone, it just doesn't seem like 3 yrs have gone by.  Dad is 84 yrs old and still sharp as a tack.

Brad (MPSIIIB) has had trouble sleeping one night this week, he did not go to sleep Friday night until 5 a.m. so he has been a little slow, he got to go to a Christmas Party Saturday afternoon, got to see Santa.  Lots of music and laughter...........

We wrapped all of our presents today and got them under the tree.........thats better than past years.

We have been cleaning out some closets and drawers in the kitchen.......little by little.

2nd week of December 2010

Another change in behavior...........never ends!!!!!!!!

Day after day......he gets up....eats breakfast, watches TV, walks and walks.......it tires him out...he eats lunch, same thing, watches TV, walks and walks on till he goes to sleep at night (if he even sleeps at night)

His day now is........

Gets up eats breakfast, falls asleep in his chair, we put him to bed and he sleeps till about 1 p.m.........he has never done this before, unless he didn't feel good.  He seems to be fine.

I just don't get it.........this disorder is so strange.........

I got him a dvd of the "Shirt Tails" (for Christmas)...he used to come in everyday after school and watch it on Television.  I think he is going to love it.........It has gotten harder and harder to get him something that he will enjoy.  I've gotten him the usual, shirts and house pants........nothing fun....except the dvd.

I can't seem to shop without finding something I want.........isn't that horrible??
I want a camera, a small one, to use and post on this site.......to share pictures of my life.  Not that anyone will ever see it.........lol

I think we are in the "Christmas Season"............

Well, now that Thanksgiving has breezed by........it is official.......its the Christmas Season!!!!!!!

I have really done well so far.........I would say that I have about 1/2 of my presents bought and I really even feel like its the season.  A lot of times, it just doesn't really seem like Christmas!  My daughter just left to go home and will return in a few weeks, so that is a comforting thought.  My Brad (MPSIIIB) has been sleeping pretty good...........no seizures.......the only problem we have been having with him lately is he stays sleepy.........all the time.  We just put him in the bathtub, he seems to be waking up a little.....he is playing with his toys (28 yrs old).  If you didn't know my situation, that would sound so weird.  But he is the sunshine in my life!!!!!!!!!  Never thought he would still be here.  He stays in his PJ pants and we have gotten him some new shirts........he is such a handsome guy.

Just found out today that the state of Louisiana is fixing to make a drastic change in the Now Waiver and my boss can't tell me anything until tomorrow.  She even said "It's bad".......OMG....what can they do now? This is my lively hood...........if I lose my workers I will just go nuts.......!!!  I could lose my job also...........that's a cut back........OK.........now my mind is racing......I will just have to wait and see what she says tomorrow..........

I also just found out this weekend that I'm a hoarder........by nature.....I'm not as bad as some on the TV show..........but I have the same responses they have when someone wants me to get rid of something.  I've been looking for a therapist..........lol............we'll see.

Gotta go do something....................

Karla

Day After Thanksgiving................

Well the day after Thanksgiving has not always been my favorite day of the year.  I'm usually broke and can't shop..........but this year I had some to spare and my mother in law was here in town and she wanted to take us (my daughter,Traci and I)  to pick out our Christmas.  I didn't want to but........what the heck.........it makes her so happy to spend Gerald's inheritance....LOL ! (We always joke about that) 

and..........my daughter is home for a couple of days and we wanted to go for a day of laughing.  We always try to enjoy life to the fullest and we love to laugh, having the life with Brad has made that a challenge.  To be happy with your life and an MPS child.......takes the patience of Job, and a sense of humor that has to be worked on!  We showed my MIL that we did not have a problem spending money! ;-D  Then for lunch I treated her to dinner at Copelands....they have a wonderful lunch menu and OMG the amount of food.......we couldn't even eat supper later.

The highlight of the weekend is my MIL got my husband to go shopping.......I can't get him to do that!  He also went with a good attitude about it...ha...I told him to try and have a good time......and smile!!!!!!!!!!!!  He hardly ever smiles!
The item they were supposed to be looking for was slippers for him to wear in the mornings.........but they came back with a jacket.....Oh, well.

The worker I had for Brad for part of the weekend has been very sick.......and my husband has stayed home with Brad and watched him for me, while I visit with our daughter, Traci.  She is home from Dallas, Tx. where she has moved to for her job.  I have missed her terribly.  She has been gone for a year now.  I have to stalk her on facebook, just to know what all she is doing...........Traci was a very important part of raising Brad (MPSIIIB)  even while she was going to Jr. High, she would share nights with me, when I just couldn't stay up with him anymore.  He would go a week sometimes not sleeping.  We didn't have help then.  She really misses seeing him, the love that she has for him is so touching.  You know, you have heard of siblings being jealous or mean, because this brother made her life so hard sometimes..........but she has NEVER........shown any of those feelings toward Brad......at times when she was small....she somehow wished it would have been her in stead of him.  Anyway.........he has slowed up on bad behavior now.......he mostly just watches TV and walks up and down the hall.......he still can say a few words now, but still has his wonderful smile........! We love those! :-)

Hope everyone is having as happy a weekend as we are having.........until later...........

Karla

Family Get-togethers.........how special they are

Day before Thanksgiving.........the cleaning.......the cooking......anticipating loved ones to come in from where they live to visit and to enjoy them........looking forward to when we will all be in the kitchen fighting for a small space on the cabinet to put together the part of what you will be cooking to share with everyone........That is the part that I like the best.  Let's face it, when you eat dinner, it goes so fast, you don't really get to share much during this part.  It's the cooking process that is the most fun.

The stories of the loved ones that are no longer here..........the way they would fall asleep in the living room after eating.....love the stories.

Brad has been doing great, sleeping most nights, walking all day............after he woke up this morning he was so sleepy, we put him back in bed after breakfast and he slept till 1 p.m. he is up now walking and talking to himself.

Have a Wonderful Thanksgiving and always remember to be thankful for the life God gave you.  Grateful for the people that he put in your life.......

Karla

What are you Thankful for today?????????

Had a very busy day today..........I also work for the State of Louisiana and I work with people that have disabilities.  I am the Advisor of a People First Group that meets in West Monroe once a month, and some of the people that have a disorder don't have close family or friends; and they don't have a normal Thanksgiving Dinner, so tonight we held a Turkey Dinner for our People First Group.  Everybody brought a vegetable or something sweet.  We went around the room after we ate our dinner and shared what we have in our life that we are thankful for.......most of them shared that they were thankful for their family and friends and one of our young ladies had just moved into this area not to long ago from another state and she shared that when she moved she was worried that she would not make any friends in her new life....she started crying, saying that it was great when she met all of us and that her life was so much happier now, she also has a job now............one person even shared he was glad because his aunt had just found a job after about a year of looking and for his first nephew..........what are you Thankful for? I am thankful for so much........yes my family, my daughter, Traci, has moved to the big state of Texas and I miss her soooo much..........God letting us keep Brad for 28 years, it has not been an easy life here.............but it has been a good one!     GOOD NIGHT!