Saturday, March 21, 2009
Guess What? Yup! Here I was just thinking how I had gone several weeks w/out a bleed and I had one this morning! Ugh! I had removed the dressing and there was an area that was red, so I dabbed it w/a Q-tip. Next thing you know, more red and then a stream of arterial blood shoots out! Yikes! I put some tissue on there and called for Mark! He got some surgicel cut up and got it on there to stop the bleeding. He redressed the wound and I got ready for work! Didn't put any make-up on, as my face was hurting. I've had a hard time controlling the pain, and it wasn't until about 11:00 am that I was finally feeling better!
Mark had taken a couple days off work to spend w/his parents, so he dropped me off @ work to keep my car. This afternoon, Mark picked me up and had Hanz with him! Mark had bathed him earlier and trimmed his hair, so he was looking especially cute! That cheered me up right away - Hanz is such a doll!
Well, my plans for the weekend are to take it easy, stay pain free and enjoy my little angel Hanz!
Y'all take care and thanks for all your love and support!
it means it is not from me... Go give her blog a peek... I dare ya...
I know it is a bit much... but it is also "for dummies" month at amazon... and when you go and look at me... ya' really get the feeling that here comes a dummy. ha ha ha! (sorta) .
For those that do not yet know me... I had a brain bleed, caused by an AVM. The first time we hit it with a gamma-knife about 2000... we thought we got it. In 2006 it what "POP" again. This time it left me right hand paralysis. It also took what little bit of spell checker I carried around with me and made it go away... it also took some of my vocabulary ... that is why you get post that are very simple.
Some of the dummies books I would life to have...
Some of them are wish list of people I know...
Good by for now...
Friday, March 20, 2009
Charity set up in Bryony Aveyard’s memoryBy Haydn Lewis »
THE parents of an 11-year-old girl who died of a brain haemorrhage have set up a charity in her name.
Rob and Katherine Aveyard, of Woodside Avenue, Burnholme, York, were left devastated when their daughter, Bryony’s life was cut short by a rare condition.
Now the couple hope to raise £55,000 to help fund a nurse for a year for children’s charity Wellchild.
They plan to launch their own charity – For the Love of Bryony – Wellchild on May 8, at the David Lloyd Club, in Hull Road. As part of the fundraising effort, Rob and Katherine will be part of a 24-strong team taking part in this year’s Great North Run on Tyneside in September.
I don't know what to say... other than go give them a look.
My wife is home...
I gotta go...
First a definition..
Arteriovenous malformation or AVM is an abnormal connection between veins and arteries, usually congenital. This pathology is widely known because of its occurrence in the central nervous system, but can appear in any location.
The genetic transmission patterns of AVM, if any, are unknown. AVM is not generally thought to be an inherited disorder, unless in the context of a specific hereditary syndrome.Wikipedia... for all you need to know
From another poster... give her a look!
He saw the pictures...really nasty looking ya'll, and he said that because there are several AVM's (small broken blood vessels) in the small intestines, surgery is the only answer at this point. The AVM condition is congenital according to the doctor and although this my take care of the problem now it still may return as she gets older.
Well, I don't care what he says, we serve a God that is able, and if He doesn't perform a miracle with this necessary operation (yes, He gives us wisdom) He is still ABLE to.
So, the surgery is scheduled for April 21st and of course, I will be off for that week and maybe the following week as well.
So, everybody send me some LOVE for the next few weeks leading up to the 21st of April and I will still post until the 20th and then I will be handling my responsibilities concerning my MOTHER.
I LOVE YOU GUYS AND I KNOW THAT YOU ARE PRAYING FOR US AND KNOW THAT WE ARE PRAYING FOR EACH OF YOU AS WELL!
With A Sincere Heart,
Otley school says thank you to hospital that saved Jamie
The fundraising efforts of a little boy and his schoolmates have helped boost funds at the hospital which saved his life.Jamie Holmes, eight, was placed in intensive care last June after collapsing at his home in Well Croft, Otley
I have to go pick my Wife up at the hospital. I don't look forward to her pain. It is understanding that she would have a lot! She dose.
So wish me and my wife a quick get better(ness).
okay got to go...
Thursday, March 19, 2009
BUT know this it is raunchy and contains loud profanity.
okay it's time to youtube you...
Guns N' Roses - Think About You (Music Machine, 1986)
Live... can't see s%it! Then whammo hit with group.... it's scary!
Peter Gabriel Red Rain Live 1986
peter gabriel sledge hammer
and one more!
Peter Gabriel - "Biko"
Biko... good song.
If you have never heard Biko take a minute to listen.
I know I didn't post any Rose's if you want to listen to them and actually buy something that has them in it... drop me a comment.
until then see ya'
A News Source. (Not me)
Just wanted to update you all on my upcoming AVM awareness walk! There are at least 4 other people (families) from my Support Network that are absolutely going to make it to SF, and a few more that are still maybes. We hope to have a large group of AVM survivors, family, and friends to represent us in this walk. I'm super excited to meet everyone in person.
I know there are a some of you that have expressed interested in walking with me. All the details are on TAAF's website, but you can just go straight here to register and choose to join the AVMSurvivors.org team! With luck, it will be a nice sunny day in the city and we can all enjoy a quick 1 mile stroll with the Golden Gate as a backdrop. I would LOVE for you to walk with us!
If you want to stay the night in the city, TAAF has arranged for a room discount at Hotel Del Sol. Josh and I will be staying Saturday night and plan on having a big get together with my friends & family, and host our out of town AVM guests! We hope you will join us and make it an entire weekend of fun. To get the discount rate, call the hotel at 1.877.433.5765 and tell them you are with the TAAF Awareness Walk on May 3rd!
The team's fundraising efforts are paying off as well! We set our goal to raise $3000, and thanks mostly to our Team Leader Kim, we are already at $2570! Nearly there. How wonderful is that?!?!? If you are interested in donating you can visit my page or just to keep tabs on our overall team progress here.
As always, feel free to pass this email along to anyone you think would be interested in the Aneurysm & AVM Awareness Walk!
This one almost passed me by... Shalon is a gem... go take a look at her blog...
May by she was in need of pain medison. <--- can't spell
What is "talk and die" syndrome?
After a seemingly minor fall on the slopes, actress Natasha Richardson is reportedly suffering from a potentially deadly head injury
By Brendan Borrell
Last night, British-born actress Natasha Richardson, 45, was rushed from Montreal to New York City in critical condition after a seemingly minor fall on a Quebec ski slope apparently led to bleeding in her brain.
Richardson, who won a Tony for her role in the Broadway play Cabaret and has also starred in a string of films including The Parent Trap and Maid in Manhattan, is the daughter of actress Vanessa Redgrave and the wife of actor Liam Neeson, 56, with whom she has two sons, ages 12 and 13...
Different paths, different stars, but it's the same goal at UConn
I feel bad for them... The survivors and the guy who survived... in the second.
okay gonna go... see ya'
Tuesday, March 17, 2009
I managed to post my other blog before I left.
God it's rough out there... and in here too..
Okay lets look at youtube shall we...
Metallica - Fade to Black played live 1985-2006
Wow Great (I think)
lets buy something...
and for those who have an mp3 player...
okay I'm out of here... have a good one...
Monday, March 16, 2009
Earlham Newspaper Article
We were asked to write an article for the local newspaper and I thought it might be a good recap of what has gone on. Obviously it does not have all of the details, but I found it good to go back through the whole ordeal thus far and see how far we have come! So, here it is…
Having lived in Earlham for twelve and a half years, I have come to appreciate many of the benefits of living in a small town. What first bothered me as everyone knowing my business now encourages me, as so many who “know our business” care about what is going on in our lives. Many of you know that my husband, Mike Evans, went to Mayo Clinic for the surgical removal of a large arteriovenous malformation (AVM: mass of intertwined arteries and veins) from the left frontal lobe of his brain. The surgery took place on February 12th, and by medical standards was a success, as the AVM no longer exists.
However, you cannot do such significant surgery on the brain without some repercussions.
Prior to heading up for surgery, we had anticipated being home by February 19th. In our pre-surgical meeting with the neurosurgeon, Dr. Fredric Meyer told us that he expected Mike to come out of surgery with some deficits that would hopefully be temporary but would require inpatient rehabilitation. This did turn out to be the case, with Mike not being able to talk or move his right side at all.
We were relieved when he spoke his first words two days after surgery. Physical therapy started immediately and we were hoping for quick progress. Those of you who know Mike know he is very driven, which we were assuming would serve him well as rehabilitation started.
Unfortunately, things did not go as we had planned. Mike spent seven nights in the neuro ICU before moving to a general neuro floor. After his first night there, he had a seizure do a temperature spike caused by a blood infection. This took him back to the neuro ICU for another four nights so that they could get the 106 degree fever and infection under control. This involved long periods of time on a cooling blanket while covered with ice bags and very strong antibiotics. He was on antibiotics for 21 days and there is currently no indication that the blood infection is still there.
After this time in the ICU, it was back to the general floor to prove he was ready for rehab. On the first night there, Mike was complaining of pain in his right leg which led to the discovery of a very large blood clot. Usually this would be treated with blood thinners, but since Mike had just had brain surgery they did not want to risk a bleed. Instead a filter was placed above the area where the clot was to prevent it from going to the heart or lungs where a clot can be fatal.
After two days he was ready for rehab! The first night he experienced two seizures that were determined to be caused by low levels of the anti-seizure medication. He had a great first full day in rehab, even walking on that first day. The worst crisis was yet to come. He awoke after the second night to have a small seizure, followed by a much larger one. Thankfully I was in the room and was able to call a nurse immediately.
During this seizure Mike coded and the nurses started CPR. Mayo is an amazing place. The neurosurgical fellow was there immediately, as well as a critical care doctor. They got Mike stable enough to transport him back up to neuro ICU. His blood pressure dropped and they were having a hard time keeping the heart beating strong enough to get oxygen to the rest of the body. An ultrasound of the heart showed a large blood clot.
The options were few. We now know that most of the doctors did not expect Mike to live. We believe it is God who had other plans. Dr. Meyer came and told me that he had told the cardiac doctors to do whatever was necessary to save Mike’s life. I signed the consent for open heart surgery and Mike was in the operating room within minutes. The doctor who specializes in this surgery was on call that day and was not already in the middle of a surgery, so he was able to operate immediately. This surgery is only done in two places in the country: Mayo Clinic and somewhere in San Diego. The surgeon was able to remove a 7 cm blood clot from the heart, as well as 20-30 smaller clots from the lungs.
No one knew how long Mike’s brain had gone without oxygen or how far he would be set back. When he woke up, his left side moved normally, which was a good sign that the right side of his brain was fine. We were hoping that the same was true of the surgical side. He started talking again shortly after coming off the ventilator, which was also a good sign. As you can imagine, Mike was shocked to wake up and figure out that he had had open heart surgery. He was not able to fully understand all that had happened until about five days after the surgery. Six days following this surgery, he was back in rehab.
Mike re-entered the inpatient rehabilitation unit on March 4th. There have been no bumps in the road so far. He basically entered at the same point he had after the first surgery, so he had some ground to make up. It has been quite a bit more difficult, given that he is recovering from open heart surgery and has pain from that. He has lost a lot of weight, much of it from muscle loss. Lying in a bed for three weeks is not good!
We are both people who like to do things quickly and rehab is slow. He has been there twelve days and made much progress. He can walk, although he cannot yet lift his leg. His right arm started moving last Monday and he can now lift it slightly. Progress is measured in small amounts. On Saturday he was able to move his toes for the first time. On Sunday he was able put his leg down flat on the bed when it was bent. There is something new every day.
Mike’s speech also continues to improve. He is still having trouble with word finding, but that is coming along better. Last week he wrote a blog post in two hours and this week it took one hour. That’s a huge improvement! Of course, he wants everything back to normal now, but he understands it is a slow process. We are hoping that Mike will be home within the next few weeks. At that point he will begin outpatient physical therapy.
In Mike’s blog post this weekend, he put this Bible verse: “Who has known the mind of the Lord or who has been His counselor? Who has ever given to God that God should repay? For from Him, through Him, and to Him is everything. To God be the glory forever and ever….” We both think that God has kept many things about the brain hidden from people lest they think too highly of themselves. We do not at all understand why all of this has taken place as it has. It is certainly not as we had planned. But we are trusting in God, who understands, and created, Mike’s brain. We give Him credit for keeping Mike safe through all of these complications and we do want all the glory to go to God!
oh my god it is early!
I know that this is a silly statement to thos who are up and moving... and an evan sillier statement for those who get to it by noon or later.
okay enough of this silliness...
Read the stuff above... enjoy... peace out!
Sunday, March 15, 2009
Jay Leno 5 Presidents Need Money BEST COMEDY Bush Clinton Carter Bush Obama Singing Beatles - Funny videos are here
I could not resicte. <--- my spring is so terrible that the spell checker don't have a clue.
okay I'm out of here... peace!
I thought you may like a few... if not... I'm sorry... I'm oh so sorry... sorry... yes I'm sorry...
By Ken Sellars
Tina Baker said her fight began when she noticed a twitch on the left side of the face her son Caleb, now 14. The tic grew progressively worse and she says that, “Caleb began looking like Popeye.”
She couldn't figure it out what was going on, but thought maybe it was due to allergies...
Mother seeks 100,000 letters of hope
By WENDY WARY
That’s all Janice Brown is hoping for. You see, her son, Andrew, is going through lengthy brain surgery Thursday, and while he takes at least two weeks to recover, those messages are just about the only thing he has to occupy his time.
The 12-year-old Newburgh resident, a sixth grade student at Sharon Elementary, won’t be able to visit with friends since his surgery is taking place more than 1,400 miles away in Phoenix, Ariz.
He also won’t be able to play any of his numerous video games or do what any other typical tween does these days to fight off boredom.
So, Janice Brown said her son will be looking on his Web page, set up through CaringBridge.org to see how many people have stopped in to see how he’s doing and to check his guest book. Brown said she’s hoping to get as many people as possible to write messages, with a lofty goal of 100,000 from across the globe.
Read More Here...
Wow so many mom's stories...
We've posted stuff on one of the boys already. It is good to see there mom's do something for them.
Today: I've got to go out... just because it will be 60 deg.... yes I said 60!
(It is going to be 32 in a few days... yuck)
The other reason is to get a piece of hardware for the toilet. Somebitch broke last night...
My wife goes into surgery this week... I can tell you I am not looking forward to it... or the long recovery that comes with it.
Anyway I am going to go... have a nice day 'eh.