Spinal Muscular Atrophy & Valproic Acid

So I thought I should update everyone on a research study I am currently enrolled in. My cousin Jeff participated in the study last year, and found it beneficial, so I decided to give it a try. For those of you who don’t know, or who have never really understood, I have a disease called Spinal Muscular Atrophy, to be technical Kugelburg-Welander. The disease affects my muscles from my hips to my knees, and my shoulders to my elbows. I have enrolled in a study with OSU Medical Center and the World’s leading researchers for SMA. It is a one year study, where I am involved in a double blind study. The drug they believe may be benefical is called Valproic Acid. This is a seizure medication they give to epilepsy patients. The belief is that the medication produces more proteins in the body, which in turn would benefit current muscle strength and growth. So far, I have been taking either the sugar pill or the drug for approx 2 months. There are days when I feel a little stronger, but I don’t know if it is really the drug, or just my mind playing tricks on me!!  I go to OSU every 6 weeks for blood tests, physical therapy/exams, lung evaluations and body scans. Needless to say, I may never see and benefit from the drug, but I keep my fingers crossed that down the road…no one will have to deal with this horrible disease. I’m also hoping that being involved in this study may prompt my family to get more involved with Families of SMA and realize the meaning it would have to me if they did. (hint, hint)…. If you want to read more about the disease, and how you can help…go to www.curesma.org

Visitors welcome!!

This week Rich and I have had a little, well not so little, visitor staying with us. My bro, Kathy and the kids were off to camp like true hillbillies in West Virginia for the week and needed a home for Abraham… Needless to say, we have had the minature horse running through the apartment since Saturday. We have been outside chasing chipmunks/squirrels, playing fetch with the neighbors, walking through other peoples flowers and getting a lot of attention. Abe is such a good dog…. I was a little nervous for how he might react to being home alone all day while we are at work, but it appears he doesn’t mind. I’m thinking that he may just have to stay for good!!! Even though CHristopher disagrees… I’m sure they wouldn’t miss him much…

 

Back to work…back to work…

It’s time I get this dang blog updated!! As for my life.. nothing much has changed. Except for the fact that I am back to work. For those of you who don’t know… back in March I got laid off. No notice, just surprise, today, we are laying you off. Work had me come back for two weeks to help out when they started to pick up, however, it just became a waste of time for me to even go in… so there I was… one year to the day not working again. After two months of time being bored.. I got a new job FINALLY. I’m working for Edgepark Medical in Twinsburg. And for the first time in my life, I can say, I actually ENJOY my job!!! Believe it or not!! I am a Customer Account Rep. It’s my job to talk to nurses, health aides and patients to help them order their supplies. I have learned more then I ever needed to know about Diabetic, Ostomy, Urology and Wound supplies. I have also learned how STUPID some nurses are…. ***sorry sissy, no offense, not you… just some out there are IGNORANT***  Right now I am working first shift, but once I am done training I will be working 1130am-8pm. I’m not so exicited about that, but it has its bonus. There is a supervisor position open on that shift, and the hope from the manager, is that I will get trained and get moved into that position. I won’t complain!! So… if you’re interested in learning more about Edgepark, go to www.edgepark.com and enlighten yourself with tons of useless medical knowledge!! HAHA.

Women of Faith weekend

This past weekend was one of the most amazing I have ever experienced. Months ago my mom asked me if I would be interested in attending the Women of Faith conference in Columbus with her and Jane (good friend of the family). I said yes, because I was thinking it was something I “might” be interested in. I will be the first person to admit that I don’t attend church on a regular basis. It’s not because I’m not a believer, but more so that I am yet to find a church that really “speaks” to me. I’m not one for the “Ernest Angley I’ve been healed” kind of thing either. Well, off I went on my WOmen of Faith journey. Friday afternoon I picked Jane up and my mom came over after work and off to Columbus we went. Friday nights conference was from 7-9pm and Saturday was from 9am-4pm. After my first year attending this event, all I have to say is AMAZING….

Friday night we heard the Rejoice group of four women sing, one speaker and Steven Curtis Chapman performed for about an hour. Saturday was filled with various speakers, singers and more insipiration. I was expecting “bible thumpers” to get up and speak about the Lord, Praise Jesus this…Praise Jesus that…but I was WRONG!! The speakers shared their own personal stories, many of which we could relate to, and of course related their story to God and how he works in our lives. THere was a great performance by Mandisa (who was on AMerican Idol, and I suggest you listen to because she is also AMAZING). I was amazed at the fact that there were 15,000 other women there listening, crying and laughing. Some stories made you laugh, others made you cry, others made you just sit back and say “WOW”. As I sit hear now and think about the conference, I can’t even put all my thoughts into words. I am already planning on going back next year, and thinking of other women I want to invite.

I can’t say enough to how thankful I am I went. I REALLY needed the inspiration in my life with everything that is going on. THe weekend really put things into perspective for me, and I hope I can continue feeling as good as I do. So….to all you women… plan on April 30-May 1st of 2010, going to Columbus for an amazing, inspirational weekend!! Not to mention some shopping at Easton maybe?? Haha. Special THANK YOU to my mom, for asking me to go… I love you!

Design on a dime…

So I have completely been slacking in the posting of new blogs… so here is a quick one. I have much to catch up on. I recently completed my own “Design on A Dime” project in the front hallway of my apartment… I wanted to make a new frame arrangement, so I decided to go black and white and found these frames in the clearance bin at Pat Catan’s! I was very impressed at how it turned out, not to mention my artistic detail in the placement… haha…

Luke & Uncle Richie

This weekend Rich and I had Luke over to spend Saturday and the night with us. We picked Luke up from Papa Steve and Grandma Gail’s. Rich had promised Luke when it snowed that he would take him sled riding, so we decided this weekend would be a good idea. After about 25 minutes of getting Luke ready, him and Uncle Rich and were off to sled ride. They borrowed the neighbors sled and off to the big hill they went. Uncle Rich took Luke to the BIG hill to go down. They went down about 4 or 5 times and then they headed to the small hill where Luke could go on his own. Needless to say, about 5 mins after being outside, Luke was “cold and ready to go home”. He was a trooper and stuck it out for about 45 minutes. Luke knocked on the door when he came home and him and Uncle Richie made snow angels for me out front. Too cute!!

The rest of the night was spent with us going to Target to get a few toys since Aunt Pammy doesn’t have any toys like Grandma Jill… Luke made sure he told me that numerous times. His exact words were, “how come you dont have lots of toys like Grandma Jill?” Kids sure are honest sometimes… After some quick shopping for a Cars puzzle and Monster truck at Target we headed to dinner at Damons. Luke brought his man out of the monster truck and his little Monster I brought him home from work with us. He  made sure they had a spot at teh table and even gave them a napkin. After we came home we played in the bath tub for a while before settling in with a snack and a little time watching ET. Uncle Rich didn’t know what ET was about, but Luke sure did! He let him know right away what the movie was about.

In the morning we woke up and headed to church to meet Grandma Jill and Papa Andy- Luke said he didn’t want to go home, he wanted to stay with us for the day. But…. we had to give him back to his mommy and daddy! We had so much fun over the weekend. I love being home and being able to spend time with my niece and nephew. They can make all the cares in the world disappear….

Ready for sled riding!!

 

Ugly Christmas Sweaters

This winter we hosted our 1st Annual Ugly Christmas Sweater Party. I must say, I am getting into themes for parties. First the Halloween Costume party, then the Ugly Sweater Party. We have talked about a “Halfway to Halloween” party too just because it was so much fun at Halloween to see everyone dressed up! Anyways, we told everyone to come wearing the UGLIEST sweater they could find. Believe it or not, it was hard to find one. We searched Goodwill, Gabriel Brothers, TJ Maxx, and the Salvation Army. Rich found my sweater, and I of course bedazzled it with some sequins, glued on bows and bells. Not to mention my red turtleneck had some fabulous shoulder pads!! Rich sported a sexy women’s sweater and killer turtleneck. We laughed so hard when everyone showed up in their sweaters. We were going to head out to the bar and place bets on who could win the award of Ugliest Sweater for the evening, but that never happend. Instead we kept it low key at home playing some cards and having drinks. A few of you missed out on it this year, but you BETTER be in attendance next year… so start shopping for that ugly sweater!!

To be ten again….

This Christmas Rich experienced what it is like to be ten all over again. All he had been talking about was his video game he wanted for the Wii- Rockband World Tour. For those of you who don’t know… I would wake up many times in the morning to get ready for work, and Rich would just be coming home. His buddy Justin has the game and all of the guys would get together, just like a band, and play for hours upon hours in Justin’s garage. I told him he was banned from going over there because I hate him coming in so late. We laughed about it most of the time though. Rich decided all he wanted for Christmas was the game. I knew I wouldn’t be able to buy it because it wasn’t cheap. However, Rich lucked out with just enough in gift cards to get the game. We went out to Best Buy about 9:30 at night and I dropped him off at the door. Rich came RUNNING ( and i am NOT exaggerating when I say this ) out of Best Buy down through the parking lot with the HUGE box up on his shoulder. He was screaming and cheering like a little kid. It was funny, and embarassing all at the same time. Needless to say, he got his game he wanted so bad!! We have spent many nights “rocking out” as he calls it. I play the guitar, or sometimes (rarely) sing. He plays the drums, and no one else is aloud to play them… Here he is in action…

So exicited!!

 

In action!

Our baby girl…

That caught your attention didn’t it?? Well it’s been so long since I have blogged I almost don’t know what to talk about. Most people I know that have a blog are updating it weekly with pictures of their babies. However, since I don’t have a baby, I am updating you on my other baby. Karrie.. .(Car-e for you slow folks). Rich and I have had her since she was a couple weeks old from the Humane society. He picked her, because she was the only one who wasn’t barking. Little did we know, that would soon change. Karrie was named after a female golfer by the name of Karrie Webb. If you don’t know the golf connection, then you don’t know Rich!! Haha. We have had her for almost 9 years. She is our little spoiled girl. Her paternal grandparents still have custody of her, as we haven’t been able to get her quite adapted to teh apartment yet. Hopefully, that will change soon. I am in the need of a  baby gate to experiment, so if you have one….PLEASE let me know. Karrie has had quite the rough life.. .from being at a Humane society, to being hit by a car, not once, but TWICE…. needless to say, about $3k later, she is still going strong. You can tell “doggy years” are starting to catch up with her as she doesn’t get around quite as fast as she used too. But she loves her car rides, animal planet, tennis balls and being outdoors just as much as she did from day one. Besides being a “daddy’s girl” she is by far a “grandpa’s little girl”. Papa Wang (Rich’s dad, as we call him) and Karrie have a pretty special bond. His parent’s want us to take her “full time” as they claim, at any time. But when she comes and spends a weekend with us, he is so happy to have her back home… I think he secretly is teaching her bad things so we can’t keep her here all the time!! Haha. Here are a few pictures of her from the last month. How can anyone not love a face like hers???

Karrie all curled up like a deer....

It's a rough life!!

My two loves!

Playing mommy for the day….

Ok, I am getting bad about posting on here. This is for you Kathy- sorry my blog isn’t as fun to read as yours!! Haha. This past Saturday, my niece Ava came to spend the day/night with Rich and I. Let me tell you, that little girl knows how to keep you busy!! Kathy brought her over early in the afternoon, and I had a whole list of things planned for us to do. Well, apparently I now know what its like when you have children, and those plans get thrown out the window!! We started our adventure at the mall. It was a cold, rainy day, and that was one of the places we needed to go. After the ten minutes it took us to get the stroller open and her in it, we were off. We had some lunch, where we ran into Grammie and Papa Ruip- Ava was too busy to sit down for the whole time, so we ate our lunch and moved on. It was obvious from the get go, she wasn’t too interested in being at the mall, which is surprising since she is a little girl. The best part about the mall happened in Bath & Body Works. While I was in the back looking for air freshners, Rich was supposed to be entertaining her as I had the stroller with me. Next thing I know, back comes Rich and Ava. Ava has a palm FULL of hand lotion to give to her “mommy”. As the story goes, the nice lady at the store wanted to squirt some on Ava’s hand as she was looking at everything, and Ava only wanted to return the favor. Well needless to say, two little hands squeezing the bottle into her hand, resulted in plenty of lotion to go around for the store. It was cute!!

After the mall, we headed over to Flower Factory. It was almost like we didn’t have anyone with us. Ava sat down in the bottom of the cart and was so quiet and content just looking at the ad the whole time. It’s the simple things in life I guess….We had planned to go out to dinner, but by this time, it was about 530pm and she was tired for a nap. She was asleep in the car, so as we got home we laid her down. Nonetheless, she wasn’t having a nap. We ended up staying in for dinner, shortly for Ava to say “I’m tired, ready for bed”. She was asleep by 8:30pm. She tossed around most of the night, and cried, but we made it through. Sure enough, by 10pm, both of us had fallen asleep too. IN the morning she came into the bed, only to tell me “Aunt Pammy, I only cry last night because I didn’t know where you were”. Bless her little heart….

We spent the morning eating pancakes, watching Shrek, and reading every children’s book I own here. By the time her mommy came to get her I don’t know who was more ready for a nap, her, or us…  Rich and I had such a great time with her. It was so nice to be able to get her alone and spend time with her. We love both the little ones, but its nice when you can spoil one of them. Luke got to stay last time, so it was Ava’s turn. We are already thinking about when we can do it again, this time with Luke. I, of course, was a bad Aunt and didn’t take ANY pictures!! There were so many moments I could have captured too.