Let's Go Down To The River!

Oh, it's all about the River today! Yesterday was just a nice day, a little windy but it just felt like we were at the beach. It made me homesick for my second home :(

I can't wait till April 1. I've had a bucket of stuff to take to the River sitting in my bedroom since Christmas. Most of the stuff I got for Christmas was for the River.

This is MY little piece of Paradise!
The BEST Outdoor Kitchen in the World (except for Moms!)
I don't even mind cooking when it's outside!


It's all about the boat too, so Dad, I hope you have a new ladder before it gets warm!
Here's the Captain, My Daddy!!

He's also Captain of the Golf Cart in the Fourth of July Parade!
Elvis even comes to the River
Mom's an Elvis Groupie (stalker, lol)

Ok, I know everybody's already seen this pic a million times, but I just love it.
This is the only reason Sarah comes to the River, haha!
Sarah's motorcycle buddy, Paul

The ride organized just for Sarah to celebrate her very first Motorcycle ride!

I'm a little sad though. Sarah told me that our wonderful River neighbors,
Paula and Santa, are selling their place. That makes me want to cry! They are so sweet, and Paula is so much fun in Church (yea, you can have fun in Church!!), and they were the ones who set up Sarah's ride, so of course she thinks they hung the moon!!!!!!!!!!!

Well, I better go for now. I have to clean up another one of my Crappy Dinners. A new Italian recipe that everybody ate, but nobody wants me to make again! At least I try. Robert said at least the salad was GREAT, grhhh!

Waiver Update & Rebel

Sarah says I love the dog the best of all my children! She says that because I call Rebel by their names all the time. She asked to borrow my cell phone the other day when hers was dead, and I went and got it and took it to Rebel.

I didn't do it on purpose, I wasn't paying attention. She thinks because I go to Rebel first when I'm not paying attention means I love him more!

He even sleeps right beside me! And yea, he gets the good pillow!

The other day I told her I had to stop by the vet to get more medicine for Bobby's ears cause he was scratching again. She asked me if Bobby was gonna go outside and shake his head and roll in the grass afterward like Rebel does.

It's an HONEST mistake!! I call Rebel Bobby ALL THE TIME! Just because Rebel is nicer to me and listens to me better doesn't mean I love him more...

does it?

I better move on.

About the waiver. Remember I was supposed to have a screening set up around the end of January. Here it is the end of February and no screening yet. They did call last week asking "What is it exactly that you are applying for?".

So here's what happened. After they requested additional info from me, and I hand delivered it to them, they evidently put it on the wrong person's desk and there it sat for a whole week before her supervisor finally figured out she wasn't supposed to have it, and called ME to see who was supposed to get it!!

So now they are telling me it will be about a week, maybe two, and we should here something from them, but if not, to call them. Oh, I'll be calling! I've worked in the medical field off and on since I was 16, and I know how things get pushed to the background (in some offices) unless you keep on top of it.

It didn't take me this long with Sarah's screening. It all depends on where you live. My aunt lives in the same town that we moved from because the school system was so bad when it came to working with special needs, so I'm not surprised by this delay.

I wish I had more news, I want to let everyone know exactly what happens during the screening, so hopefully it will be soon!

This is what Mom does at my house when she's supposed to be working with Sarah!
Just kidding, Mommy! Really, we work her so hard that she just drops when she finally stops!

Busy, Busy, Busy

Wow, it's been such a busy week with eBay. I had my best week ever last week, selling 29 items. And so far this week I've sold 9 things in 2 days. I don't know what's going on, but I'm liken it!!

There were a lot of problems and changes this past weekend too. The site that Robert Lee and I use to list our items was injected with virus malware, and whenever somebody clicked on a picture in our listing, they got a warning that their computer could be infected. NOT GOOD!! AND we couldn't do any posting or scheduling all weekend. That just wasn't going to work for me, I have 4 buckets of stuff to get listed before we start going back to the River, and I keep buying jeans every week, and I'm never gonna get caught up as it is, so I joined another site.

I had to pay a monthly fee for this site, but already I LOVE it so much more. The templates are cuter (and it's all about the cute for us women!) and the site is easier to use once you get used to it. So Sorry Auctiva, I've found a new love, Seller Sourcebook!!

So, if you sell on ebay, and don't use a Third Party Site for listing, you might want to check them out. It makes all the difference in how your listings look!

Check out one of my new listings, it's too cute!! Click Here

Well, I better go for now. Sarah is kicking me off the computer. She says it's her turn! By the way, you gotta check out her latest blog entry to see a hilarious picture of how she puts her pants on in the morning! It's "Moon Shine" time, lol

In Memory of Bruce Moody

It's been a sad few days. My dad's cousin (by marriage) Bruce Moody died Saturday. He was an excellent and well known Bluegrass musician and I'll always remember the family reunions and other times when I got to see him play.

I loved to watch and hear him, and have fond memories of going to a musical venue to watch him last time we were there, and telling Mom and Dad how much I loved it and wishing I lived closer so I could visit more often. I love his wife, Gloria Jean. She made us feel so welcome in her home and I just loved being there. They were an awesome couple, and I know how hard it's going to be for her now.
I've read soooo many tributes to "The Mountain Gentleman" over the last couple of Days on Google. Here is a link to his Website. His MySpace page says "Bruce is singing in Heaven with his daughter Ann". That makes me cry. She passed away at such a very young age after being hit by a drunk driver. To know that he's with her now makes my heart sing!!

Goodbye "Uncle" Bruce, We Love You and will Miss You Terribly.

Crystal's Crappy Dinners

Today it's all about the Kitchen!!

Ok, about the Deer Roast! Everybody LOVED it. It smelled sooo good cooking. Bobby said it tasted just like my beef roast. Sarah said she liked it as long as she didn't think about what it was because it made her sad! Robert said it didn't have that "deer" taste. Bobby's friend told him he had soaked it his Uncle's secret way. Mom said it was the best deer she'd ever eaten (gross!) She took some home for Dad but wasn't gonna tell him it was deer. Dad reads this blog, so guess what Dad? And me, well I tasted one little strand of meat, but I just couldn't do it. I couldn't eat Bambi. I have no problem with cows and chickens because I've eaten them all my life, but I can't do deer. So I had a Veggie (fake) chicken sandwich while everbody else enjoyed my delicious dinner.

A couple of the blogs I follow list their dinner menus for the week. I think that's cool. They must be very organized! I think it would help to think out what I'm going to fix for the week, and then ACTUALLY do it. I've tried this lots of times in the past. It lasts a few weeks, then I'm right back to running in the kitchen at 4:00 trying to decide what I can throw together before Rob walks in the door at 5!

Anyway, it got me to thinking...these other blogs have great healthy meals listed, and if I were to list my meals, I would have to call them Crystal's Crappy dinners because if I try to make healthy, nobody will eat it. If I go for seafood, Bobby has a fit. If I make anything Chicken, he cries "Fowl", (haha I crack me up!!) You get the picture. If it were just me and the Big Man, we'd eat Chicken and Brown Rice or Beef and Brown Rice 3 times a week, you can do lots with those two basic ingredients and veggies, and we love it! The only thing I make that everybody will eat WITHOUT complaining is Lasagne, and even Sarah said she didn't want anything garlicy last time I made that. Oh yea, and hamburgers.

Speaking of which, I tried out a new way to make up hamburger patties, since I buy 10 pounds of hamburger at a time. I mixed the meat with bread crumbs and water, and rolled (smooshed) it out into a rectangle, then used a cup to make the patties. It worked ok, better than making all those patties by hand! I think I'll keep this little trick up my sleeve.

My mother in law gave me that chopper for Christmas year before last as a gag gift. She said that because I have almost every gadget there is, she thought she would get me this since it was all over TV at the time. Well, little did she know that it would become the most used piece of equipment in my kitchen. I used that sucker so much I finally broke it. I don't know what I'm gonna do. I'm so lost without it. I even bought a brand new one last year at a yard sale to use at the River. I sure wish I could go get it right now. Wal-mart had them, but I can't find it now that I need it, boohoo!!

Anyway, back to my original thought. I might try to list my Crappy Dinners for the week on this blog. It will probably be embarrassing, but whatever. It might help me to try to cook better. I'm a great cook (make them stop laughing, that's not funny), but I'm a fattening cook. Just ask my Mommy. She's loves to eat here, especially when we have steak subs & Mexican (no not at the same time)!!

Anyway, it was just a thought. And I've already decided I just can't do it. I can't think that far ahead. For now anyway!

Is this normal? Do most families have this much cereal? It's normal for us, but people seem to think we hoard cereal. The only other person I've ever seen with lots of cereal is Robert's Aunt Sheila. I think it's her fault we have so much. When we visited them in Pennsylvania one year she opened her cabinet to ask what kind of cereal we wanted for breakfast and I was shocked and in awe of her wide selection. I think we've had lots of cereal ever since. Thanks Aunt Sheila!!

Ok, what about this? Is this normal? My Dining Room table can look like this and I don't have a problem with it.But let one little can get out of place in my cabinet and it'll send me into a fit of panic. Every label better be turned to where I can see it. Don't just stick something in there without making sure it's perfectly positioned. I WILL hunt you down and beat you!
My mother says I have OCD, because I'm the same way with my towels. Now, that closet doesn't have to be perfect, because Sarah gets in it the best she can, and sometimes she can't reach stuff, and stuff falls out on her head, and she shoves it back in. I'm ok with that. But DON'T fold my towels wrong. I'll take every one of them back out and redo them. And who in their right mind would fold a towel inside out, then have the nerve to put it in the closet that way? MY HUSBAND, that's who. I love you honey, but BACK AWAY FROM THE TOWELS!!!

One Last thing. Here's what I'll be doing today. I don't have a clue what's in this freezer cause I can't get to anything. The one in the garage is even worse. So if it's not TOO cold, I'm gonna clean both of them, well okay, just rearrange them, then maybe I can start to plan a meal or two. God knows I have enough crap in there to make a months worth of crappy dinners!!

Have a Crappy (I mean Great) Day!

I almost forgot, today is my Mommy-In-Law's B-day. HAPPY BIRTHDAY SANDY!!

Importance of Keeping a Medical Journal

We're having "Deer" for dinner tonight. Bobby brought it home a couple of months ago from a friend and put it in the freezer. He's been begging for me to fix it for him. He loves it.

I, on the other hand, am gagging just sitting here writing about it. I don't know why but the thought of eating Bambi makes me want to hurl.

I'm gonna stick it in the crock pot and cook it like I do a Roast, with potatoes and carrots, but I know I won't be able to eat it. I'm sure that Peanut Butter and Jelly sandwich will do me just fine tonight!!

Today I want to talk about the importance of keeping a Medical Journal or Notebook for your child. I finally got mine up for sale on eBay, so I thought now would be a great time to talk about it because you can go to the link and look at the one I created to get ideas on how to make one.
You can buy a notebook already made. They sell them similar to mine but more "Professional" on the internet, but there's no need to buy one if you have a computer. You can make one up yourself.
The ideal thing would be to start it when your child is born, but I didn't think of it then, so I started Sarah's when she was about 8.

You need a place to keep EVERYTHING related to your childs health and education in one place. I'm sure you know by now that at every new appointment, no matter if it's Doctor, Therapy, School, etc. they have a thousand questions. What model wheelchair do you have?, what is your Ortho Drs. Phone Number?, what was the date of Jrs. last surgery?
When you keep a Medical Journal, you have all of that information right in one place. Whenever you have an appointment, you just grab the notebook and take it with you.

I can't tell you how many Doctors and Nurses were SOOO happy to see our little notebook. I wrote down every doctors appoinment, every Rx, every Diagnosis, and I had everything they needed when Sarah was in the hospital or Drs. office and they started asking questions.
You can click here and here to see a list of ALL of the pages in my notebook. I keep my pages enclosed in Page protectors to keep them looking neat, and I keep extra copies of some of the pages, like Sarah's list of Surgeries/Dates, so when we fill out those forms that ask for dates of surgeries, I can just write "See attached" and give them a copy.
I also keep notebook paper to write notes about appointments, and a business card holder to hold all of the cards people tend to give out.
It's very easy to make your own notebook, and you'll be surprised how much you'll use it, refer back to it, and wonder how you ever did without it!!

Of course, if you already have one, you know exactly what I mean :)

Bathroom Modifications

~Just because I Love this picture~

Hello There!

I've got some Bathroom modification pictures today. I don't have a pic of what our bathroom looked like before we remodeled it the first time, but it was small. What we did was take the bathroom in our bedroom (which backed up to this bathroom) out and used the extra room to make Sarah's bathroom bigger.
This is the hydraulic chair lift that Sarah used for years and years. As you can tell she is young in the first pic and older in the second! The people that worked with my husband got together through a program they had at work to help others and had a Brunswick stew sale to raise money for the chair.

Sarah loved that the chair went up and down with the turn of a button on the armrest. The only drawback was that she couldn't get in and out of it by herself because it swiveled and there was no way to stop it from moving. I had to hold it still while she transferred to it.

Well, there was another drawback. This chair was heavy, and we had to transfer it in and out of the tub because Bobby also used this bathroom. After several years, the water wouldn't drain out of it completely, so when you sat it on the floor, you had to put it on LOTS of towels to soak up the water that ran from it.
This picture shows the little sink we put in just for Sarah. The main sink had cabinets underneath, and she couldn't get close enough to it. When we remodeled the first time, we didn't change the original sink area, just painted it. The second sink looked a little unconventional, but it worked for us! We also installed the taller handicapped toilet, which works great for Sarah's transfers.
These pictures are of the remodel we did last year. We took the little sink out and moved the toilet over closer to the tub, and put in a bigger sink. I'd be glad to explain our bathroom routine in detail off line, you can email me @ crystalcooks63@aim.com.

This sink has plenty of room for Sarah to get underneath. There are 3 medicine cabinets put together to make the big mirror that are hung at regular level so Bobby can use them, but Sarah couldn't see up that far, so we added a small mirror under them just for her. (The cabinet above the sink is just a reflection of the wall behind it).
We put drawers on both sides for all of Sarah's stuff. She keeps all of her necessary bathing and primping stuff in there, as well as a few towels and washcloths so she can reach them herself. You can tell she's already "broke in" the cabinets at the bottom by scraping them with her wheelchair! Tis the normal look of furniture for "Wheelchair Families", lol!!
Because she spends so much time in the bathroom on "Bath and Beauty" days (Bowel Program Days), Robert put in a Cable hookup for TV and an electrical socket for her Stereo, and will eventually put a shelf there to hold those things. By the way, all of the wall cabinets in the bathroom are recycled kitchen cabinets from that remodel!!
Now Sarah uses a regular bath chair. It works well for her, despite our initial reservations. She can transfer herself over to the chair and showers all by herself. This is her "Me Time", and she can be in that shower for 2 hours plus (Thank goodness she doesn't run the water the whole time)!! And don't bother her while she's in there, you'll be sorry, won't you Nanny?
You can't really see it, but there is a switch on the other side of the showerhead. One way makes the water run from the showerhead. The other lets the water run to Sarah's shower wand.
Robert fixed this so that Sarah could hold the wand while she showered, and it didn't hang down from the showerhead. As you can see in the picture, there is a place built into her chair to hold the wand. This chair was donated to us by My Aunt Georgia and Uncle Don, better know as Dr. Aunt Georgia and Santa Claus!!

Praise the Lord! Praise God in His sanctuary; Praise Him in His mighty expanse. Praise Him for His mighty deeds; Praise Him according to His excellent greatness. Praise Him with timbrel and dancing...Let everything that has breath praise the Lord. Praise the Lord!
Psalm 150: 1-2,6

I Love My Church. We are struggling right now. But this has been my Church for exactly 30 years now. We've seen highs and lows as every Church has, and I have always tried to stay away controversy because I do NOT like confrontation, and will run from it if possible!!

I love our Praise and Worship Team! I think they are talented, annointed people used by God to help bring us into His presence. All that being said, I just have to say this:

If you are SO unhappy that you have to loudly complain about the music IN THE MIDDLE OF Praise and Worship, when you should be PRAISING AND WORSHIPING and threaten to leave because of it (SO LOUD that the people on the other side of the Church can hear you), maybe that would indeed be the best thing for you to do!!!!!!

I'm just sayen........



My God Reigns!!

Have a blessed Sunday Everyone!

(No, my Church people don't read my blog. Like I said, NO confrontation)

Spina Bifida Camp

I almost died Tuesday. Okay, I exaggerate a little, but I was so sick I thought I was dying!! My family doctor, better known as Aunt Georgia, seems to think it was a gall bladder attack. I think she might be right since all I had was fever and severe nausea and stomach pain, and it ended just as suddenly as it started.

Dr. Aunt Georgia suggested a bland diet for a couple of days just in case, so I ate Spaghetti for lunch and Chinese for dinner the next day. I'm a little non-compliant, but luckily my own stupidity didn't get the best of me....yet!!

On to more important things:

There have been some questions about how to help your child become more independent, and since that's what I wanted to write about next, here goes (home modifications can wait just a little longer).

The first great experience for Sarah was Spina Bifida Camp (now called Self Help Skills Camp or Independent Living Skills Camp). Every year Easter Seals hosts Camp especially for kids with special abilities. The first time Sarah went, she went for weekend Camp with her Grandmother (I couldn't go because of back trouble). They did everything they do in regular Camp, only Grandmother was there and it was only a weekend, so she wouldn't be overwhelmed her first time. I think she was in Second Grade.

The second time she was about 10 years old. That was the hardest thing in the world for me. Our camp is about 4 hours away, up in the mountains of Virginia. The camp is 11 days long. That was the longest 11 days of my life!!

Camp at 10 yrs old (Notice the bunk beds. Kids on the bottom, Counselors on top!)

I could call and talk to Sarah's counselors whenever I wanted, but they preferred I only talk to her one time. It was for both of our good, as we both cried like babies when we did get to talk.

Sarah saw at Camp how much other kids did for themselves, and she wanted to be independent just like them!! There were lots of fun activities, every day was packed with exciting things to do like canoeing (not a favorite for someone who doesn't like to get wet!!), horseback riding, campfires, camping out under the stars, cooking, talent shows, etc.

Most of the time was spent with the other kids, but for about an hour a day, kids who needed therapy were worked with one on one. They worked with Sarah on dressing herself, fixing meals, cathing (it was before she had her Ileovesicostomy), bathing, you name it, if she needed help with it, they worked on getting her to do it independently. (They worked with the kids all day as a group on these things.)

At night when the kids took showers, the counselors put their Bathing Suits on and got all the way in the showers with the kids, nothing was too hard for them to do. If they needed help, they called other counselors in. Sarah said these were some of the best times, they had so much fun with the trials and errors of bath time!!! There were always Nurses and Therapists around if you needed them. I'm not sure if Drs. were there around the clock or just on call.

Sarah was about 13 or 14 when she went back the next time. It took her a couple of years to get up the nerve again.

They were VERY into Face Painting (Latex-Free of course!)

Singing a duet in the talent show

Sarah loved riding Horses!!

Clowning Around!!

Dancin with a Fella!!

This Face made the Easter Seals of VA Brochure!!

That time she was like an old pro, no crying (on her part), and she had a great time. She learned even more independence the second time, and had a blast!! There are some kids who go to Camp EVERY year, and it's just like their vacation home, they hated to see it end every year!!

Here are a couple of quotes from the Easter Seals Website:

"As counselors and camp staff, you have no idea the impact that your care has. Long after camp is over, my son will talk about camp and share what he has accomplished. He will talk about who he met and what he did. But most important he asks 'Do I ever have to stop foing to Camp Easter Seals?' that shows me that is was excepptioanlly well care for (thank you Lauren from Redbird) and that the atmosphere is the same as when I was there. You have no idea what a profound impact you have had on his first camp expereince! And...I thank you for that!"

Here is what a long time camper said about her experience at camp:

It is the highlight of my every year. It is the only place I can go and feel independant and normal like other kids. It helps me for a week or two our of my life to not be lonely and to feel like I am worth something and part of real life. There is so much to do and so much fun. I get to meet new people and everyone looks past my disability and likes me for who I am.

Click Easter Seals Camp for more information.

You can print the application forms right from the Website.

The only drawback for us is that it is very expensive. And just like everything else, if you make a certain amount of money, there is limited finanical aid available to you. The first year Easter Seals paid part of Sarah's tuition, and my parents and in-laws helped out also. Here again is where contacting Civic or Church Groups for help could benefit you.

Sarah also went to special classes at Children's Hospital for Independent Living. There they also worked on cooking, dressing, personal hygiene, etc. I think it was covered by Insurance as Occupational Therapy?

Of course, the biggest boost she got in Independence came when she went away to school (Woodrow Wilson School for Employment) after graduation from High School.

I'll talk about that next time, I've got to go do dinner dishes now!

Have a great weekend!!!!