Out of the mouths of babes!

Yesterday while on a car ride home Brandon asked me about Nickie's learning to drive a car. I explained to him that Nickie's disabilities prevent her from driving a car. This made him really sad. So he said, "Mom, how will she get to go anywhere when she moves out on her own?"
I explained, "Brandon its not likely Nickie will move out on her own. She needs people to take care of her since she can't do it on her own. So whenever she wants to go somewhere I will be the one taking her."
"So she won't move away when she is grown up?"
"No baby, she won't, unless she decides to move to a place where they help people like her to live kind of on their own. It's called an assisstive living facility. They have people there that help others to live on their own. I think Nickie will want to stay home with us because we love her and take the best care of her."
"Mom, when I am old enough to drive I'll take her places."

"Oh Brandon that is so nice of you. Nickie will love that."

Then after a long pause he says.....
"Mom?"

"Yes, Brandon."

"Do I have to move away?"

"No, Baby you can stay with Mommy and Daddy for as long as you want to."

"Good I want to stay with you forever."

"I'm so glad you feel that way! I would love for you to stay with us forever. I know you feel that way now baby but when you grow up and don't depend on mom and dad any more you will want to start a life with a wife of your own."

"Well she can come live with me at our house, can't she?"

"Well, she could but I know you will both want to live on your own and start your own family. That's still a long way down the road for you and we will just have to see what happens."

"Mom, if I don't forget about this when I grow up and I hope I don't. I will just live with you and dad forever."

Now you tell me... isn't that the sweetest thing you ever heard? I love my boy

Update on things

My aunt, Tia, had a complete mastectomy on Wed. She had at first opted for a lumpectomy but after speaking to many friends decided for the complete removal of the breast. She was in a very up beat mood and I'm sure this in and of itself was what helped her to get through the surgery so well. I saw her again 2 days after surgery and the woman was up mopping her kitchen floor. Wow! Is she ever a tough one!

Nickie has been doing well with no hip pain and the school is making accommodations for her to be able to get back to school and have a place to lie down a couple of times a day to get her off her hips and rest. We hope this will keep her from having to have any more surgery.

I'm filling out applications locally as well as trying to find some legitimate work from home. This means Brandon will have to go back to public school, he's really OK with that idea. It will also mean some added income. I've been out of the "real" work force for so many years I'm sure it won't be a simple task to re-enter. I could really use your good mojo, happy thoughts, prayers etc. I'd also love any job ideas any of you might have for someone out of the work force for 18 years.

crazy busy here!

I'm tired just thinking about all the stresses of the last few weeks.

A few weeks ago I found out that my aunt, Tia, received the results from a biopsy that came back malignant. The dreaded cancer had once again found its way back into my family. I didn't really know what to say to her except that I was so sorry to hear about the diagnosis and that I'd be there for her any way I could. I offered to go with her to see the oncologist on 9/13/07. I would have to help her interpret what he had to say. Though she's been in the states longer than my 42 years she still has a lot of difficulty with the language. She and Mom came here from Cuba together but Mom faired much better in learning the language than Tia did. So the plan was for the three of us to go together.

Nickie receives a brand new spiffy power wheelchair.. this is the first time she has ever gotten a new chair that didn't require weeks of getting used to it. She loves this one and so do the rest of us. Its capable of much faster speeds and turns on a dime. Look OUT!

Then we made it home from our vacation and I noticed Nickie was having pain in her left hip/leg. She seemed fine as long as we didn't move her, well except for the fact she was contracting the leg or guarding it. Any position change or toileting caused her to scream in agony. I thought perhaps the storm that caused our quick departure from the beach, the fact that we had to grab her up and literally had to struggle to get her into the wheelchair that was already loaded into the van, perhaps we damaged something. I thought back to our departure and subsequent night stay at the hotel in Nags Head and I realized that Nickie didn't complain at all when I moved her into the bed, positioned her and did the reverse in the morning. So I don't think that is what caused her pain. We arrived home the next day and that is when the screams of pain began. I did everything I could to make her comfortable including giving herTylenol and Motrin but none of those seemed to help. I tried heat and cold and again no relief. So after a couple days I called the orthopedist to arrange for an X-ray. I couldn't get an appointment with her regular pediatric orthopedist in Richmond so I called on a local orthopedist in Farmville.

I should have known better. The minute he saw Nickie I think he panicked. He did take an X-ray but said he could see no problems and referred us back to her pediatric orthopedist. It took a few more days to get an appointment with Dr. Sharps but he decided to also X-ray her spine. He found nothing wrong with either x_ray and decided she should have a CT scan. guess what happens next?

Yeah you got it more days pass before we get notice of the date of the CT scan. We finally get notice that they would like to see her for the CT scan on 9/11/07. Since I already know I have to go to Richmond on the 13th for the oncologist I decide to stay in Richmond at my Mom's for the duration. This means I have to make arrangements with Nickie's nurse Linda to stay with us as well. Linda is a godsend! She agrees to stay with us and this helps me out tremendously!

We go to the CT scan on Tues. We are grateful to find out that she doesn't need to be sedated. (The doctor first suspects we might need to sedate her to keep her calm and still.) Thankfully the techs and nurses decide to try it without sedation first and it was successful. The staff was fantastic and we were in and out of the lab quickly... getting the disc with the results however took much longer than the actual procedure. Finally we get the disc and I have to carry it over to Dr. Sharps for him to read it and tell us what we are to do next.

9/12/07 Nickie's birthday, she's 17 today! We celebrate by going shopping for her birthday gifts. She picks out some Game Boy games and clothing and jewelery. She takes off in her new wheelchair leaving Linda and I in the dust. Linda takes off after her in one direction and I do the same in another trying to cut her off. No such luck we both turn our perspective corners and can't find Nickie anywhere. I pop into a couple stores to see if she darted in to one but no one has seen her. Linda proceeds to go down the mall and ask if anyone has seen her.. no luck. I spot security and ask them to help us to find her. Some 15 minutes later we find Nickie is in a nearby store shopping for video games. After giving her a stern talking to I agree to purchase the game she found. This would not have happened had it not been her birthday.

48 hours and still no word so I call the office to ask when I will hear about the results of the CT scan. I was shocked to hear that I won't get an answer till sometime early next week. I'm sick that Nickie has to deal with her pain that much longer without some answer and possible relief.

9/26/07 I finally here from the orthopedist today. He has some scary news... he is seriously contemplating surgery on Nickie's hip due to the deformity she has there. His nurse Tina explains the various options. There are several different surgery options from a total hip replacement down to removal of the hip with no hardware being installed and finally a wait and see approach. I update Tina on Nickie's condition at present. She is in no real pain at this time though she has been out of school for 6 whole weeks now, which allows her to rest her hip in bed. She decides to give this information to Dr. Sharps and promises to call me with his thoughts on what is best to do.

9/28/07 I hear back from Tina and Dr. Sharps agrees with me on waiting it out. He would prefer not to do any surgery on Nickie unless it is absolutely necessary! Yee Haw! Nickie has had far too many surgeries to date and I had hoped we might avoid having any others. They will be asking the school to provide a place for Nickie to take 2, 20 minute breaks each school day to rest her hip. We hope this will provide her enough of a break from sitting in the wheelchair for hours at a time and prevent the pain from returning.

I'll update soon on my aunt's progress and with any information regarding Nickie.

Until next time.

quiz time

I always knew I was cool! Now I have test results to prove it!

Beach memories

OK this should have posted on 8/23/07 but didn't for some reason...I just realized it didn't...

Yes they are memories now but great ones! We left for the outer banks of NC last Wed. This was our long overdue vacation. I'm sorry to say its been over 3 years since the last one. This trip more than made up for the time in between. However I hope not to have to wait as long for the next one.

The weather was fantastic for most of our trip, with mostly sunny days in the 80's. We took a trip to Ocracoke Island. The Ferry ride over was great. Both Brandon and Nickie held up crackers to feed the seagulls. I was able to capture one picture of a gull coming down to Brandon's cracker. I think I'm putting that one on the wall.

We spent most of the day walking through the town and shopping. Both Nickie and Brandon enjoyed the stroll and the final outcome which of course was souvenir shopping. Nickie scarfed up on some wonderful beach jewelry. Brandon got some pirate stuff, can you say ARRRRRR! We ate at the Jolly Roger which is our favorite spot to eat on the island. Its an open air covered deck area at the marina. Every other year we have gone the heat made it nearly impossible to enjoy the meal... notice I said nearly. The food there is really good so not even the heat would keep us from eating there. This time though with the temperatures as they were and the constant ocean breezes it was truly divine. The Pelican pictures I posted are from the deck. It wasn't until I got home and could see the pictures up close did I notice that the Pelican had a hook stuck in him. It didn't seem to affect his flight in anyway, though. Despite the detail(when seen in full size) in that picture he truly was a good distance away from the deck so the hook would have been impossible to see with the naked eye.

We rented a 4x4 to make the drive out onto the point in Buxton. This is the only way we can get Nickie out on the sand as her wheelchair would just bog down in the sand and since even those beach wheelchairs cost a fortune this was the least expensive way to go.

Post Secret video

I've mentioned a couple times at least what a great site Post Secret is, now there is a video you have to see. What a difference he's made to thousands of people. Go check it out!

View from dining room window

Feeling BETTER!

Just a week ago, though I was trying to keep my spirits up, I was finding it hard to see the end to the nerve pain. Thank God its gone and I pray never to return. Bob is also feeling better though still on a liquid diet. He's all skinny now. That's fantastic, though I must admit I'm jealous as heck! I could stay on a liquid diet for a full year and not lose what he did in less than 2 weeks. I have been trying to eat more healthfully and Jackie and I started going to the Y last week. Something I've been thinking about doing since February.

Yes I know call me the queen of procrastination. That's me! Now that I finally got the motivation what do you think has happened? Nickie's nurse has quit. Yes, the story of my life. She didn't even have the nerve to tell me about it. I had to hear about it from the nursing agency giving me less than 2 weeks notice. I've said it a gazillion times I HATE nursing care! In general I hate nurses, with the exception of the nurse that will be taking the full time position beginning in August. She really has been a Godsend. Nickie loves her and she really seems to love Nickie as well. We've had only maybe 4 nurses in the course of our 15 years of experience that have been truly great people and nurses. You know the type that went into nursing to help people! Most are in it for the almighty dollar and let me tell you this isn't the business for that. OK, I'm stepping down off the soap box... for now!

I'd like to wish you all a happy 4Th of July! Don't forget to thank a veteran for your freedom! Say a prayer for them all! If I have any luck I hope to have some pics from our celebrations. We are going to our town's celebrations, I hear it is a ton of fun. The truth is we haven't attended a fireworks display in I can't tell you how many years. Let's just say Brandon has never gone to one and he will be 9 on the 17Th of this month. Its sad, I know, what a terrible mom! Well we will correct that tomorrow. Till next time

Pain, pain and more pain

Over the last couple of weeks Bob and I have been falling apart. First I started having pain in my left shoulder and arm and I'm sure in an attempt to have the bigger, badder pain, Bob begins complaining of severe abdominal pains. Well you all know how men are. Nothing is worse than a sick man. Am I right or am I RIGHT? Yeah I'm right! Or so I thought.

Last week I had moped around complaining of the pain in my left shoulder and arm feeling quite sure that I had a pinched nerve that was causing all my pain. I had decided that if the pain continued through the weekend I'd have to break down and see the Dr.

By Friday night Bob began to have severe stomach pains that kept him up all night and kept him doubled over in pain throughout the weekend. All weekend he moaned and groaned and made my moaning seem unimportant. As the weekend continued it was obvious he was going to need a Dr. as well. We scheduled an apt. with our old Dr. back in Richmond as we had to make the drive to pick Jackie up anyway.

What a mistake that was! Dr. "Doofus", I won't call him what I was originally thinking, didn't so much as take any blood or spend more than 2 minutes with either of us. His diagnosis for Bob was to take some magnesium citrate, a colon cleansing drug and don't call him in the morning. His answer to my pain was to take 3 Advil every 4 hours and he gave me a sample of some anti-inflammatory drug that didn't help in the least bit except to make my glucose level go through the roof. Thank you DR. Doofus.

So the following day I took Bob to the local Dr. and she did blood work and sent him to the ER for more testing. We hadn't been to this hospital before and were happily surprised to see no one waiting in the waiting room and he was taken into triage right away and back to the ER in moments. "Wow, maybe its a good thing to live in the country and have a small community hospital?". Bob said.
"yeah! Looks promising!", I said.
We went back to a room and the nurses quickly came in to start an IV and have Bob drink that tasty contrast to have a CT scan done. We were informed we had a 2 hour wait for the contrast to work its way through his system before the CT scan could be performed. We were thankful this little community hospital had a tiny TV screen we could watch for that 2 hour wait. Surprisingly the 2 hours went faster than I had imagined it would. They nurse came in to take him to his CT scan and promised to have him back in 10 minutes.
"Viola!, he's back!", said the nurse when she returned.
"Just as you promised!", I replied.
We patiently waited for the results of the scan. One hour passed, then two and our patience went out the window. The Nurse practitioner came in to say the specialist would be in to discuss the results. Fear set in. Why in the world do we need a specialist? Hesitantly the NP said they saw Pancreatitis (inflammation of the pancreas). Soon every nurse, NP and DR came in to ask how much alcohol Bob drinks. He isn't a drinker. He may have some beer with an occasional dinner out, ie: all you can eat crab legs or on some special occasion. They made us both feel we were telling less than the truth. How rude!
After spending more than 6 hours in the ER the specialist shows up to tell us he normally would admit a patient in his condition but if we would go back to our PCP in the next 2 days he would release him. He suggested an ultrasound to rule out gall stones. We agreed to his terms and went home.
Two days later we saw the PCP who did more blood work and told Bob he needed to go on a clear liquid diet for 2 weeks.
"2 weeks?", Bob and I said in unison.
"2 weeks!", said Dr. R.
Dr. R then wrote a prescription for pain and we were on our way.

Thursday will be 1 week and I'm surprised at his will power to eat, ummmm. drink a clear liquid diet while the rest of us eat as usual. I'm coping with my shoulder pain and it does seem to be easing up a bit. I have no doubt that my reading Joel Osteen's book "Your Best Life Now" has helped me to get through this. Joel is a great motivational speaker. If you haven't seen him look for him on Sunday mornings. I highly recommend his book as well. Till next time!

Harpers Ferry, WV

Thanks to my sis-in-law, Linda and her email about this festival. We planned a spur of the moment camping trip to Harpers Ferry, WV. It was a beautiful town.


The area is rich in history. We didn't have enough time to see all there was to see and we will certainly return someday when we have more time to see it all. We will also have to make time to visit the Charles Town races just minutes from Harpers Ferry for some horse racing and some slot machine fun. Many years ago Linda and Ronnie introduced us to the horse races but we haven't been back and we have yet to try our hand at slot machines. Some day we will do just that.

At the festival we saw some amazing things! Here is a picture of some awesome masks made from leather. I couldn't afford any so this was the next best thing.

Braving the hot sunny day was my diva Nickie.

Nickie was intrigued by a man in a power chair that painted with a mouth stick. I wish I'd taken a picture of her intently watching him. I was just as amazed! His paintings were beautiful and reminded me a lot of my friend Theresa. She paints with a mouth stick also and was born with the same condition, Arthrogryposis Multiplex Congenita, Amyoplasia, as Nickie has. She does some amazing work. Those two make me feel even the more inadequate due to my lack of talent even with the full use of my hands and feet. That was the one thing I kept feeling walking around so much talent at that festival, how I lack talent for anything. I wish I could paint, draw, make something creative. Something I loved and did well. Something others would want to purchase! Alas, it isn't to be.
Here is a shot taken by master photographer known only as "Brandon",
That's Linda, Ronnie, me, Bob and of course Nickie.
Bob found this to add to our living room.

They call them rocks on fire! I couldn't resist purchasing one.
Well I'm off to plan our next camping tip!