Keppra Wean

Well Naomi had her last Keppra dosage at 8 p.m. June 21 and so far so good.

She woke up Monday the 22 and had a pretty good sized cluster, before her dose was due, and I just thought "To heck with it!". It had been a week since I dropped her dosage and the Dr. had said every one to two weeks so I just took that out of the equation. If she's gonna cluster on or off the medication I'd rather be with out it.

Well she has been fighting teething for the last week. Her ketones dropped significantly for a full week with nothing done differently on our part. Then this morning they were back up again. So hopefully she's out of the woods with the teeth.

She's been having less than 20 myoclonic seizures in a day. Those are really light too. The other day Bill asked me how she was after her nap and I said "she had 4 but I really had to look for them". Another thing is they seem to be affecting mostly her legs. So it's just her feet turning in that tips me off she's had a seizure. Sometimes she doesn't move at all she just kind of rolls her eyes and you can hear it like it's contracted her diaphragm and pushed air out. Once in a while they'll make her fall. She just did that. She wasn't expecting it and her head dropped slightly and she stumbled backwards and couldn't catch her balance and fell on her bottom. But that's it. I can live with that.

So good days for a while now and we're feeling a little more comfortable and are going to leave Monday for a vacation. Don't tell Isaiah or I'll hear "when we going to Austin's" every 5 minutes until we pull out of the drive!

M.J.'s CPR

Anyone who's trained in CPR knows the first thing to do is get the person on a hard surface. When the caller was talking to the 911 operator he stated that Michael Jackson's doctor was doing CPR on a bed. The operator even said "get him on the floor". Then the caller said Michael was slumped in a chair. It is just odd. Why is it when celebrities die there is always these little details that cause so many questions.
Since the 911 call was first released this has bothered me. This morning on the Today show was the first time I'd heard anyone mention it.
I am so sick of the coverage of all this. How much can there be left for us to know? They're just going to speculate for the next couple weeks until the autopsy comes back. Speculation is not news.

Good News

We seem to have some good news from the oncology doctor at Cleveland Clinic.
My dad has to take hormone shots every three months.

The cancer is in his bone and lymphnodes in his stomach (?), but the hormones will slow or stop the growth of the cancer. The doctor drew an illustration to show my parents that the hormones block the brain from sending messages to what ever produces what we don't want produced.

Also he is eligible for a clinical trial at the clinic. They've always done the hormone treatment then if that doesn't work they do chemo. The doctor said the thought now is going towards, why wait until you're sick. So if he takes part in the trial he will not only take the hormone shot but will take 2 hours of chemo, one day a month for six months! My Dad said he was just doing the shots at firsts, then I got on the phone and said "Dad this is a no brainer! Why wait!? Go after it now!" So he said Ok, he will go ahead with the trial. They won't even have to pay for it! The doctor said all they'll pay is their $25 copay. So all in all it will cost them $150 over the 6 months! Like I said No Brainer!

I'm so happy they went for a 2nd opinion at Cleveland! Those doctors are wonderful up there! Dad said he sat and explained thoroughly everything and answered all their questions. The doctor even told him if he decided he didn't want to do chemo any longer he could stop at anytime. They wouldn't use him as a guinea pig.

Dad's PSA was low. That is a protein produced by the cells of the prostrate gland. They take a blood sample and measure the PSA and they can mark the disease by the levels rising, or something to that effect. There is no "normal" PSA, but generally when it rises above 4 they do a biopsy to check for cancer. Well Dad's was only 2 something. Apparently Dad's body doesn't produce the protein. So it would never have been detected that way.

Also, not about my Dad, but about the clinic. Last week a local news was doing a story about the proposed universal health care. They interviewed one of the heart specialist at the Cleveland Clinic. He said if they can come up with a good plan he's all for universal coverage and we should be ashamed that there are 76 million in this country with no coverage. But then they were talking about why Cleveland has such good care and relatively low cost. Here's why, and I don't know why every hospital couldn't adopt this!! Cleveland Clinic doctors work on salary. The heart Dr. said whether he does surgery or angioplasty he makes the same amount of money. Plus Cleveland has all it's specialist under one roof so there is better communication and a group effort in treatment. There is very much a focus on wellness also. This made so much sense to me! It also made me feel like our Dr. wouldn't order unnecessary tests just because his house payment is due (know what I mean!?).

Well, I'm happy, so very happy and thankful! If not for Akron Children's making me so mad when I went there for Naomi I wouldn't have taken her to Cleveland. If not for the excellent care we've gotten there I may not have insisted my Dad go there for a second opinion. If I hadn't he'd be going through radiation right now that would be doing NOTHING for him!

Everything happens for a reason!

Naomi's Prius

This is my mom and Naomi in what mom calls her Prius. She's sitting in it "reading" a book. She's crazy for books! Why does it seem that bike seats have gotten cruelly smaller since my youth!?

I took her for a ride then Grammy took her for a spin. When you haven't been on a bike for a while you realize how much it works your legs!

No bike riding this week! It's been way too hot! It was 92 degree yesterday with a really high humidity. That was until the evening when thunderstorms came through and all of a sudden it was 66 degree outside!


This is not Naomi in her Prius, it is one of the baby squirrels around our house. You probably can't tell how little this fellow is but he is smaller than a chipmunk and really cute!

Smartypants?

I'm watching the Daily Show on Comedy Central right now and this really cracked me up. It's an example of something I was thinking of the other day.
You know, people in Canada or Mexico, they probably know A LOT about the history of the United States. But what do I know about their history? NADA! I couldn't even tell you who either's president or (as I just realized) if Canada even has a president. I know Canada is sort of ruled by England. I know I can be in Niagra Falls, Canada in about 4 hours. But I'm pretty sure I couldn't name all the provinces of Canada. I couldn't even name 1 of Mexico. What are they called in Mexico? States? Provinces?
Except for the Queen of England and Prince Ranier (spelling may be off)of Morracco. I think the only other ruler could name is Khadaffi (spelling again). I do know who rules Iran but I'll not even attempt to spell that!
Anyway, the Jihad Walking piece on this portion of The Daily Show is very interesting!



Jason Jones: Behind the Veil - Ayatollah You So

The Daily Show With Jon Stewart	Mon - Thurs 11p / 10c
www.thedailyshow.com
Daily Show Full Episodes Political Humor Jason Jones in Iran

This makes me mad!

This kind of crap happens all the time! This one was lucky! But just look how many Amish he passes!
There's usually a really sad story that comes out of these types of things. Countless times people have hit groups of kids walking to school. Well, when kids are walking in a group you can bet that some of them are siblings. There are times when 1 family will loose multiple kids to stupid drivers like this.
One of the most gruesome happened when a man ,who's license had been revoked, was speeding and passed on a double yellow line. He lost control of his truck and hit a group of Amish kids. One little boy was hit so hard he was embedded in the front of the truck. I think 4 of the kids were all from 1 family that time.
I just hate to see stories like this!
Who is so stupid they try to out run the cops IN A MINIVAN!????

Happy Father's Day

Night thoughts

This is the kind of crap that runs through my mind as I'm trying to fall asleep. Actually I've thought of this for the last 2 nights! Considering Naomi got me up at about 4:30 this morning, it was not time well wasted!
What if the early Americans hadn't killed most of the buffalo. Did you know at one time there were 30 to 75 million? By the time we started protecting them there were only 350,000 left. The biography of Daniel Boone that I read described a scene that Boone came upon where French hunters had killed so many buffalo that you could walk 100's of yards on the carcasses without stepping foot on ground. Bet that smelled nice! The French killed the buffalo for the tongue. That's all they took of the animals! It was a delicacy.
There are a few farms that raise buffalo around here. Even one beef-alo. Once when I was going north with my mom to visit Grandpa a warning came across the radio that a local farm fence had been knocked over and buffalo were on the loose. They have to just shoot them. There is no corralling buffalo. So with all the news about black bears coming into neighborhoods, what if the buffalo were still running strong? Can you imagine walking out your back door and seeing a buffalo standing in your back yard? (this question is not for Fawn and Michael! It may be possible for them! :)
Maybe I've purged this from my mind and can just go to sleep tonight!

Visiting the Clinic

I've been to Cleveland Clinic quite a few times now over the last nearly 2 years. My parents went up for tests and had time to kill and a volunteer asked "Have you visited the rooftop?". I've never been to the roof top!!!! I want to go now! You can bet I'll be visiting it my next trip there! Mom and Dad said it was lovely. There were indoor and outdoor observation sites and you could look right down Euclid Ave. to downtown Cleveland, which is over 2 miles away. They said you also could see out to Lake Erie. We have to go back in August I'm hoping to be able to take Isaiah and we can visit the roof.
Last week was the first time my parents had been to the clinic and so I went to show them how to get where they were going. It is a little overwhelming at first. Then you get the hang of it and it's easy peasy to get around.
My mom said "how much ground do you think this place covers?" Well, she asked a volunteer that on their most recent visit.-- 140 acres! --We were way off! I knew it was big but my goodness!!!!!! 4 doctors started the clinic after WWI and wanted to serve humanity and never turn anyone away. It's just amazing the talented doctors they've attracted. Everyone is so nice there!
If a family member has any problems I couldn't even begin to tell you how much I would recommend them!
It's always nice to leave a doctor appointment and even though you're not cured you feel hope and know you're in great hands.

The Amish

There are a lot of misconceptions about Amish. Even around here!

First, (for Suzanne) they can eat in restaurants. Both men and women, but the men are the ones you usually see out especially at lunch time. Lots of times I run into construction crews at restaurants for lunch. Lots of Amish girls work in restaurants before they marry.

One thing that I thought was funny was I saw an Amish man with a cell phone. I don't know if it was for his work or what. He'd have to charge it some time and they don't have electricity running to their homes but I think they could rig up a battery to charge it. Or charge it in the vehicle of the driver that takes the work crew he was with to job sites. I think the reason they don't have home phones is the Amish live to be unconnected with the "outside world" and the actual telephone line running pole to pole, home to home links them to the outside world. So the cell phone would be sort of an Amish "loophole". It's wireless, there fore it connects them to nothing.

Lots of people think they don't pay taxes. They do. Of course they pay property tax. Which in Ohio funds our public school system. They don't use that system, but they still pay the tax. I think they pay tax on goods, such as Walmart, just like everyone else. People get hateful around here about Amish not paying tax. I've also heard people complain about the buggies tearing up the roads! This is so dumb to me! It's the semi's and heavy trucks tearing up the road! Not the buggy!

Until Amish children are school age they are only spoken to in German by their parents. They learn English as a second language.

They have an amazing ability to put things in God's hand and to forgive. They are non confrontational. They don't accept homosexuality, it's kind of like our military, don't ask don't tell. They just ignore it basically. We have Amish friends who I'm pretty sure have a gay son and they have only ever said "girls make him nervous".

The kids are free to experiment outside of the Amish lifestyle until they choose to join the church. If they leave and live life outside for a time then decide to go home and join the church they are welcomed.

They tend to have big families. Usually a child for every year of marriage.

I read something that said the marriages are usually not romantic, but I don't really think that's true! I've seen plenty of young couples and they sure look in love! Besides I don't think you could have so many children and not love one another and work well together. The kids are primarily the mothers responsibility but the fathers help out too. Usually at the store or in a buggy it's the daddy who is holding the child. I saw a mom out in her garden with a small child in a little red wagon and 3 other little kids looking on, watching the baby.
The biggest misconception is they don't have indoor plumbing! They do! They have toilets, bathtubs, kitchen sinks that run off of natural gas water heaters. They even have refrigerators and stoves just like ours, again run off of natural gas.
My family was friends with an Amish couple named Mary and Mose Raber and knew lots of their extended family. Mary's home was always neat and tidy. The quilting frame was usually set up in the front room. I have quite a few quilts she either made or did the quiliting on. She had a sister named Susan who never married and lived out her life sharing a home with their brother, who also never married. Susan's home was so clean it seemed like every surface was waxed! Even into her very old age it was that way! I'm sure her nieces helped her later in life but it was unimaginably glossy. That's it glossy! That is how I would describe her little house!
They are a very interesting group. But often misunderstood like any off center religous group.

I wish I'd had a video camera!

Today the kids and I ran out to a little country market in the middle of nowhere to get some lunch meat. It's going to be near 80 all week. I don't want to have to cook!
On the way there we passed 3 Amish kids working in a hay field. I do mean "kids". I bet not one of them was over 10. The little girl seemed to be leading the team of horses while another little boy sat by her. The other boy was picking up the mowed hay and stacking it on the wagon and stomping it down to get as much as possible on there. On the way home we noticed the kids had drove the wagon in the barn and were unloading it with pitch forks. (I can not imagine giving Isaiah a pitch fork! He'd have holes in his toes for sure!).
What we saw at that farm made the next thing all that more funny!
We were driving home and on the left side was a farmer in a John Deere tractor with an air conditioned cab, pulling a bailer that kicks out the big 6 feet or so round bales. On the right side of the street, standing in the corner of their yard closest to the road, there was a group of about 5 or 6 Amish kids standing and watching the farmer kick out bales.
It was so cute! You know those kids had to be thinking that looked a whole lot easier than what they had to go through!
Those little kids are sure good workers! I'll tell you something else. In all my years of living among the Amish I have not once seen an Amish kid pitch a fit, act like a brat or be anything but polite and good natured. Whether it's at Walmart, a restaurant, grocery store or their own home, they've always been really good kids!

Good Boy

Isaiah still doesn't know there's anything wrong with my Dad, his Best Pal.
He stayed with my parents this weekend.
My Dad has been having a lot of lower back pain. He told Isaiah his back hurt and he was going to soak in a hot bath to try to get some relief.
Isaiah jumped to action! He ran the bath water and even ran around the house to find a George Jones CD that he thought his Papaw would enjoy listening to in the bath. Even set up the CD player and turned it on.
Last night Isaiah said to me "Did Papaw tell you he had the best bath ever today?"

Rainy cool Saturday evening

It is rainy and cool, yet surprisingly bright and cheery outside so I'm in the house on the Internet while Bill plays with Naomi.
Here's what I'm doing and it's hard to stop. Go to one blog, read the latest, then look at recommended blogs on that site and go to those blogs. I think you could go on forever doing this!
But I better stop!
So if I stopped at your blog and commented and you thought "where the heck did she come from!?" that's how it happened! You're just part of some chain I made online.
Why do I run into so many bloggers from Washington state??? I'd love to find a blogger in Pe Ell, Washington. My father in law lives there!

To the Hospital

My Dad's appointment was for 3:15.
My mom wanted to leave by 1.
We got there in record time and were sitting in the waiting room by 2:30.
They have a new system where they have you clip this badge on and then they can tell where the patient is in the building. Yet, they still kept calling names and saying "where's Mr Zimmerman? Mr. Zimmerman?" So why couldn't they just look him up on the GPS type thingy?
They have you fill out this questionnaire on a little computer. My parents are not computer friendly so I did it even though it's just put the pen on the correct answer then put the pen on next. Don't exactly need an IT degree for that. I wonder what the 75+ year old people think of that? I bet it intimidates them.
So, the Dr. comes in, hands us each one of his cards. Which I liked immediately. Like saying "here's how to reach me". Then sits down and asks what is going on with my Dad. I told him- "Friday they go to the urologist, he basically says 8 weeks of radiation you'll be good as new. The next Wednesday they go to a radiation oncologist who says there's nothing he can do for him. Two totally different opinions and they both would have been looking at the same pathology report."
So he looks at the report. Sees that Dad's PSA is really low, below the level they would even normally check for cancer. Then flips through everything else. He says "This doesn't jive". I think that made my mom a little relieved. To have a Dr basically say this makes no sense, because that's what we've been thinking all along.
He immediately said we need new tests done. He set up appointments ASAP for a bone scan and CT scan and he sent us straight down to the lab to have his PSA retested. Then he said Dad needed to see an oncologist as soon as all of that was done and gave us the name and told us a little about the oncologist he recommends. They've already set all of that up. So by the end of this month all of this will be in full swing.
Here's what I'm now thinking about the previous, local doctor my Dad saw. He was a urologist. He should have found the cancer, then sent Dad to an oncologist who specialized in prostrate cancer treatment and THAT doctor should have decided what route should be taken for treatment. So now I can't help but think of all the poor men who've gone through this and just went with what the Dr. said and may have been helped by a different treatment.
For all the men out there, when my dad said "isn't below 4 a normal PSA?" the Dr. said "there is no normal". He also said that metastatic prostrate cancer with a low PSA is not impossible but it's very rare. So that's where we are. I feel like my Dad is in excellent hands. Did I already say that the Cleveland Clinics urology department is #2 in the country! We are so blessed to have such awesome care so close to home! I love each and every Dr. we've come in contact with there!

Random things

See in the side bar that I'm still reading Little Dorrit. It's taking forever! This is the last Dickens book I try to read. Over 800 pages, tiny print. How did people read it by candle back then?

About the squirrels. When I let the dog out they don't run. We have punk squirrels. I swear they have gangs or something. The black ones are the worst. They come right up to the house and they aren't a bit afraid. You'd think as you walk closer they'll run, but they don't. They don't move until they're good and ready. I've pulled up in the driveway and had to wait for one to finish his business because they don't just scatter.

There's a picket fence out back that contains the dog. There's a rabbit who comes and sits outside the fence and feeds on the grass. When the dog is out there, straining at the fence, barking , barking, BARKING! She just quietly, calmly sits there and eats her grass.

Anyone ever get a stinky stick in their mulch? It looks like a carrot that's growing straight up but it has brownish green slime on it that smells rotten. Hence the name stinky stick. We haven't had any pop up yet but the last year or two some have popped up.

There are car shows EVERYWHERE in Ohio during the summer! Fairgrounds, Pizza Hut, shopping center, grocery store, Dairy Queen. Anywhere they can park, they have a car show. I sometimes drive by 2 on a weekend.

On the way to Walmart or the grocery store I often wonder, "who else lives in an area where they drive through horse poop, on the main road, on their way to the store?" Or have rails to tie up horses at local hospitals and stores. We call them "road apples".

The air quality here in our town is sweet! And I do mean SWEET! There's a cookie factory right down the street and the other day I had the windows open and the wind was coming from that direction. It smelled like baking brownies! Maybe it was my favorite Archway cookies Rocky Road cookies! MMMMMMMMMM....

When I lived in North Carolina I started calling shopping carts buggies, I still call them that.

I grew up calling Pepsi and other such drinks Pop, but refer to it now as soda.

I never took to saying "I had the kids picture made" that sounds odd to me. I say "I had the kids picture taken". People in NC use way too many double negatives. My high school English teacher would have cringed if she heard my speech when I lived there. I know "ain't got no" was said by me more than once. Ain't got no sense. Ain't got no money. Ain't got no good language skills. I'm not proud of that.

Lastly, just a fact. I got a bike trailer thing for Naomi on Sunday and have taken her on 2 bike rides. She seems to like it but doesn't squeal with laughter like I thought she would.

John & Kate and another tabloid story

I know, I'm getting sick of it all too!
Her in a bikini on the tabloids.
Him on People.
But here's my latest thought.... When they started all this talk about the children being exploited I thought, Oh give me a break. The talk of the kids not getting any of the money, although I thought once Kate said on TV that the kids college was already saved for, I still hope they're the parents they seemed at the beginning. Parents who would put money away for the kids without being made to do so.
Now they keep having all these TV celebrities on the show and it's not just watching life at their home anymore. It's watching a staged show. Duff from Ace of Cakes, Emeril! and next week is the American Chopper guys!? What the heck! What do they have in common with them? OK, Duff I sort of get, they went to his shop to make Kate a birthday cake. Emeril coming to their house to cook a meal? HUH? Though I loved it, just loved it when he shoooed Kate and told her to leave John alone.
Now this isn't John and Kate tabloid fodder. This is one of the most despicable things I've EVER heard about a tabloid! Brooke Shields mother has dementia and a tabloid reporter checked her out of her nursing home and took her out for hours driving her around trying to get a story! How disgusting. I'd also be really p.o.'d with the nursing home for letting her be signed out!

Sunday Morning

This morning I went to the back door to let the dog out. She didn't come right away and I saw a squirrel. Then I looked again, 3 more! I saw 4 squirrels in just one spot in the yard at 7 a.m.
There's a baby one that is about the size of a chipmunk but has a bushy tail. He was playing with one of my hosta plants yesterday. He was jumping around and looked like he thought the plant was coming after him. We have brown, black and grey squirrels but lately I've only seen the grey. Because we live in town they get big. I swear some of them you could mistake for a cat!

Weaning

Naomi is now down to 200 MG of Keppra twice a day. I moved her down to 200 mg in the a.m. a week ago. So much has been going on this week I wanted to wait until we'd be home with no appointments for a few days so I could drop her evening dose down. It's the evening dose I always worry most about because she has clusters in the morning. Then this morning I thought, "Is it the smartest thing to drop her on a Friday night knowing that all the Dr's offices are closed for the weekend?" DUH!
Well, so far so good. Her ketones are down with the calorie increase we did. I've emailed the dietitian and told her to go ahead with the ratio bump. I think we'll just go to 3.75:1 for now and if in 2-3 weeks I still want to bump her to 4:1, I'm calling and getting that done. Even if I have to call her neurologist and whine like a 5 year old and say "But you PROMISED!".
Update on Dad- I called and got him an appointment for Wednesday with a urologist at the Cleveland Clinic. There is none better. We'll see what he says. Dad's current urologist basically said it's still in the prostrate, 8 weeks of radiation you'll be good as new. That was Friday. Wednesday the radiation oncologist said he didn't even know why the Dr. ordered radiation, there was nothing he could do for him. So 2 very different things! From the paper work I've seen even if it is still in the prostrate it's an aggressive form of cancer. Not the slow growing cancer usual to the prostrate.

Dad

Sorry for the downer but my dad has been diagnosed with prostrate cancer and it doesn't sound good. I'm calling for a second opionion today with the best cancer hospital in our state.





But how will I ever break the news to his "Best Pal"? They are closer than close!

Who's a celebrity?

Isaiah's keeps rubbing Naomi's belly and saying "Who's a celbrity? Who's a celebrity?" Here it is

our tv debut. A lot was left on the cutting room floor. Wish more info cold have been shared about the diet.

Gimme More

Ok, this is my opinion.

I've lived in communities where GM and Ford were major employers for a long time. These people get paid very well, for unskilled labor. The local GM plant is closing and I feel bad that people are loosing their jobs. But.... the general feeling by many is... it's hard to feel sorry for them.

I know there are people that went in there and gave their all every day but there are a lot of stories from workers bragging about being lazy on the job. Stories of people clocking in then finding a box to take a nap on and sleeping most of their shift. That's napping at $25-$30/ hour. A friend's grandfather retired from there. The grandfather died and GM paid for the funeral, paid for the attorney to settle his estate and the wife still uses his medical policy because it's better than the one she had as a retired nurse. They had a 20 and out policy. So you only had to work 20 years then you could retire with most of your pay and awesome benefits.

I know of a family where 1 family member worked for Ford and they were given a computer for each member of the family and classes at the local college to learn how to use them.

Just about everything that would come up the auto companies had covered. It was a good place to work for a long time, people took advantage and also had a sense of entitlement. If your Dad worked there you were almost guaranteed a job. The local news keeps showing a video of an assembly line and one of the workers is on the cell phone! NOW, if you were at work and a news crew showed up wouldn't you turn off your phone!?

They made a lot of good money for a long time. New vehicles, big homes the works. On no education. The union demands grew and grew. It was near impossible to loose your job. The union helps the people who don't do their job and don't show up but the people who show up and do what they're supposed to get nothing. They need nothing they do what they're supposed to and most of what the slackers aren't doing. It's all so aggravating. Isn't sleeping at work like steeling from the company! It should be automatic firing, but UAW backs them up and keeps their job and after 20 years of slacking they can retire and get a large amount of their pay and keep benefits. What company WOULDN'T go bankrupt?

They can blame Bush, Obama the stock market. But it's a lot closer to home. It's a loss of management, a loss of being able to make people do their jobs. It's a loss of pride in your job and a job well done. It's sad...