Today's news... got a bunch of them.

Two of this...

Really, It is a New Day

When I talked to my sister last night, she said the tagline for yesterday’s post was deceptive. She expected an encouraging report and felt duped. She thought something like Here We Go Again would have been better. She’s right. Today is looking up, so we’ll try this tagline again!

It is almost 10 a.m., and so far today we’ve seen the primary doctor, an infectious disease doctor, a doctor from speech pathology to do a long assessment, the head of speech pathology, and the occupational therapist, who also happens to be a Luther grad. The physical therapist got sent away because someone else beat him here. Mike also ate breakfast in there somewhere. Whew!

Mike’s fever went down overnight after he was put on the cooling blanket. However, it does continue to fluctuate. We have been told this will probably continue for awhile. We will not know what the specific bacteria is that is causing the infection for a couple of days. They also do not know where it came from, which appears to be a bigger issue than I initially thought.

The speech people were encouraging from my perspective, but not Mike’s. He wants things to go really quickly and they aren’t. His speech fluctuates with the fever, so at times it is better than others.

We have not been told when we will leave ICU, but I am guessing not until at least tomorrow. It’s kind of hard to hear everyone else around here talking about leave after a day or two, when we have been here 10 out of the last 11 days. That’s just me feeling sorry for myself. I think Mike and I were both overly optismistic in our expecations. We had hoped to be going home yesterday.

On another note, Gabbie vomited last night at about 4:30 a.m., all over my parent’s new carpet, new bed, and new bedding. Ugh! So, my mom had to take the day off to take care of her. Please pray that none of the other kids get sick. I feel terrible that my mom is having to deal with this.

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A Quick Update

This will be quick, because snow is coming and I am heading back to the house where I am staying.

The doctor was just in and Mike said, “Greetings, Dr. Folgerstrom.” That would be great, except his last name is Fogleson! This guy has a sense of humor and got a kick out of it.

Mike has been much more alert and talking a lot more this afternoon. His temperature is below 100 now, which is good. All the fluid that was around the incision wound following has gone away, so they are pretty sure the infection is not from the surgery.

Several people have asked what the name of the bacteria is. It is not one that is often seen and I couldn’t possibly remember it. I will ask the doctor to write down the name tomorrow.

Mike had a great physical therapy session today. They had him sitting up and writing and then standing, assisted, next to the bed. Apparently the gludious maximus muscle is starting to work, which is a very good thing.

I had better get going. I plan on getting a good night’s sleep tonight. Dr. Fogleson said as he left that he is on call all weekend and that he hopes for some good cases this weekend. He left and returned an few seconds later and said, “That means I want to people.” We knew that. He had a long day of surgery. That wanting to help people is why we are here!

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Capital Health Uses Innovative Treatment for Stroke, Brain Conditions

The first patient in the region was recently treated using Capital Health's new state-of-the-art biplane angiographic system that will provide faster and more accurate vascular care. The new system dramatically improves the ability of neurosurgeons to see blood vessels and conduct complex, minimally invasive procedures in the brain to treat aneurysms, anteriovenous malformations (or AVM's), head and neck tumors and strokes.
read the rest...
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Surgery #3 is a go!

Jake's been doing really well lately, his wound on his AVM is almost completely healed! We've been making bi-weekly trips down to Iowa City to meet with Jake's plastic surgeon, measuring how much his AVM shrinks. The doctor's plan of action was to wait and see how much it would shrink on it's own before removing the mass surgically. The first 2 weeks it shrunk a half centimeter....and then stopped.

We had some questions last week about some of the drainage on the AVM, so yesterday, the doctor who performed Jake's 2 surgeries called and asked to see him. They wanted to be sure his AVM wasn't infected from the embolizations. We (Michael, Jake, and myself) went down there yesterday afternoon, and got a good report from his surgeon - no infection, and the surgery was successful. The doctor even said that they "amazed themselves" since it's healing better than they could have imagined it. What a great meeting!

Michael called the plastic surgeon before heading down to Iowa City, to see if we could meet with him at the same time. The surgeon was teaching a class yesterday, but he wanted to see Jake, so they asked us to stop by his office around the time that his class was done. We finished with the first visit early, and headed over to the plastic surgeon's office and waited in the waiting room for about a half hour. When Dr. Hamilton came in, he was happy to see Jake. He measured Jake's AVM, and found that it hadn't shrunk any farther. It was time to schedule the surgery to have the mass of the AVM removed!

Jake was VERY happy to hear this news! The thought of not dealing with his birthmark anymore was quite appealing to him. :) He joked (rather seriously) with Dr. Hamilton that he'd like the AVM in a jar after the procedure, so he can show it off to his friends. Jake was also very determined to have the surgery scheduled for March 2nd. On that day, he had a vocal concert at school scheduled that he did NOT want to be a part of - he hates the songs, and hates the actions going along with the songs even more!

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scary

So right around the time i was born my mom's doctor's discovered an AVM in her brain (a knot of blood vessels).

I was a high risk pregnancy because of the AVM & my mom could have very well died during delivery. This is also the reason I'm an only child.

Luckily enough, my mom lived through my birth & was also able to undergo a cutting edge radiology treatment for her AVM.

The only catch? apparently about 20 years after receiving the treatment, most of the patients are experiencing random seizures. The doctors don't know if they should attribute it to scar tissue or just a long-term effect of the radiology.

I didn't find any of this information out until a few months after my mom's first seizure which was in July 08.

It was weird finding out that my mom's case wasn't just an isolated incident & that in fact quite a few people were experiencing just what she was.

My mom couldn't drive for quite a while & she was put on an anti-seizure medication that she'll have to take for the rest of her life. Getting the dosage right was really tricky because if she took too much she would get debilitating headaches but if she took too little she was obviously at risk of seizing.

Well yesterday my mom started showing classic symptoms of seizure while at work & the nurses she works with made her lie down & called her doctor. Apparently my mom never fully entered a seizure, but she was really shaken up about it & said that she couldn't shake the feeling.

I don't know if it means that her medicine is working because she didn't actually have a seizure, or if it means that she'll have to increase her dose & deal with all these headaches. But needless to say, this situation has gotten me a little bit scared the past day and a half.

I guess all i can do is go home & spend time with my mom & be grateful that something terrible didn't happen.
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I have been feeling okay... the cold seems to have gone.
It is 20 deg. Far. and the snow is falling.

I have to find a way to cut $$$ out of my budget. I am running into problems. I wish I had someone better dealing with a budget. I am no good.

Okay, today I'm not going to youtube you.
There was just to much news.
I am going to CJ you however...



I think there great! go give them a look.
That's it kids... good bye for now.

A little youtube... just for fun!

Funny... sorta.


WOW!!!


Elton John - Sad Songs (Say So Much) Live At Wembley 1984


Paul McCartney and Wings - Silly Love Songs

Okay enough... I am having a hard time working. I am not making any $$$. Sure it gets me out, which is nice. I don't know... what a mess.
I'm so confused.

Oh well, I will think about it... and get back with you... maby.
oh check this out...

okay... I gotta go.
C-Ya

Got One... no me... sorry.

It’s a New Day
I arrived this morning at 6:10 to find Mike with another fever pushing 105, so I think we’re in for another long day.
I beat the doctor by 5 minutes, so I probably got maximum sleep. They cannot figure out what the fever is from yet. They are bringing in the infectious disease doctors today. Obviously it is better to know what we’re dealing with than not, so please pray to that end.
He is still on the cooling blanket that he has been on since they put him back in ICU. I am thinking this is the same thing that was used on our neighbors’ newborn daughter to preserve her life. So, in spite of everything today, I have been thanking God for the technology and thinking of little Amanda next door.
As I was driving into Rochester, I was listening to the Come Weary Saints CD. I wrote about it a couple weeks ago, when we were still at home. I decided that the Sovereign Grace people need to do another one called Come Even Wearier Saints. I thought I was weary a couple weeks ago. I wasn’t. I hope it doesn’t get any wearier than this!
I also called a friend last night and told him that I needed a pastor. He was very pastoral and told me that as hard as this all is, we didn’t make the wrong decision. I needed to hear that last night.
My parents were at a basketball game and ran into someone they casually know. His father had a stroke at age 44, which is exactly how old Mike is. They discovered it was caused by an AVM. He died a couple of years later. He told my parents that he thought it was a good thing Mike had the surgery. This is from a son, which is really why we did this, so that our kids will have a dad for many more years.
Just another way God is good. When I am starting to question what we have done, He sends both spiritual and practical confirmation that all is well, from His perspective. Hopefully by tonight it will be better from ours!

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That's it.... I am at work... I tell you about it later.
Untill then... reach out and give to the person in the above blog a nice hug.

One from Pasture Mike's site. AVM News

One from Pasture Mike's site.

New Day, New Room

Mike has been kept very busy today. He has done physical therapy, occupational therapy, and moved out of the ICU.I decided that I needed more sleep, so I went home earlier last night and came in later today. This morning I called the night nurse to find out if Mike had slept better. He hadn’t, but the nurse finally figured out that Mike was a pastor and decided to do some speech therapy. He figured that if Mike couldn’t sleep, he’d make him talk. Nurse Dave is also a Christian, and he told me they had some good theological discussions.

This morning the occupational therapist and physical therapist were both in to work with Mike. They both feel like progress is being made. Mike sat on the side of the bed for quite awhile, and even stood to move to a wheelchair for the move to the 9th floor. Mike likes this floor better, but I liked the personal attention from the nurses in the ICU. I’m not convinced anyone knows he’s here! Maybe he will actually be able to sleep tonight without being too bothered.

I also went on a tour on of the rehab unit today. It is quite an impressive facility. There is some concern that there will not be a bed available, so that is definitely something we could use prayer for. Currently they only have double rooms available, and I’m sure Mike would prefer a single room. Once rehab starts, it is like a 9-5 job. They keep them busy all day and the patients are pretty much exhausted at night. Quite a thing to think about beginning that a week after surgery!

I started this entry over two hours ago and am finally getting around to finish it! Mike was able to get up into a regular chair for dinner. They said it helps with his core strength. It does make it harder eat, though. He is either still really hungry or the food is not too bad, because he ate almost everything.

Benj enjoyed being around here today. He was good for some laughs and helpful with Jared. Jared actually went to play at someone’s house today. They are relatives of some people who are in our church. When we were almost there, he said that he wasn’t staying. When I went to pick him up, he wanted to stay. Go figure! He had so much fun that he’s going back on Thursday. Our friend from church, Kathleen, also came back, which is a real encouragement.

When the surgeon was in this morning, he said that we’re in Genesis now and the book is long. Later Mike commented that it ends in the celestial city. That’s what this persevering is all about. We want to testify of God’s goodness in getting us from the beginning end.

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And then there's me...
Mt wife came home early... she has a headache.
I got nuthing for ya.
oh well I said I wouldn't do it... but here ya go... youtube


Poop Tattoo...
Okay that's it...I'm going to bad.... I think.
Good bye...

Got two AVM News... well one and a half...

February Fun

Hello to all of my friends, family, and fellow AVM'ers! I haven't updated in a while but have a few things to share!


First I will start off by saying that I completed trip #12 in Denver, and everything went well. I feel good. I feel more like myself than I have in a long while. I finally am starting to feel like a "normal" person again. No longer in constant pain, no longer so worried about bleeding. And boy, is it a relief! I am confident that these treatments are working, and I'm pleased with the progress I have made in the past year. I have no doubt that I am on the right course and just need to stay steady and strong.


You can read my entire trip report on my website here. It was a good trip and I got to meet up with Allison again and this time her mom Jody as well. Also, I had a surprise when Sharon, another woman I met through my website, was also in for treatment the same day. I posted "glamour shots" with both girls in our fashionable hospital gowns! I really need to get a move on making something a little more flattering to wear on the next trip!


The weekend before we left for Denver, Josh and I met up with Camellia and her family for a Tea Party! It was great to meet them after emailing so often with Margie. The girls are beautiful and both very delightful! They played dress up a little with the fun stuff at the tea place (so did Dad!) Camellia ordered Bubble Gum tea (seriously made with bubble gum!) and Serene had Tutti Fruity which she added just the right amount of milk to, in order to create the perfect PINK tea! It was nice to connect with them in person. I think we will definately keep in close contact with this family for years to come!

And finally, I wanted to just update about the upcoming AVM Awareness Walk in May. Details are coming together and I just need to register for the walk and get my donations page up and running. I hope that many of you will be able to join me in person and enjoy a beautiful day in the city, walking at Crissy Fields for something that is obviously very important to me!

As always, thanks to everyone for your continued support, encouragement, and love!

Shalon
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And a half....
Transcranial doppler study of cerebral arteriovenous malformations after gamma knife radiosurgery
Park S-H et al. - These results suggest that AVM vessels with high Vm and low PI values return to normal as the nidus of the AVM is obliterated after GKS. Although there was a trend toward a reduction of the Vm values after obliteration, this trend was not significant, except when the <>
go read... from here
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I now I put music where I normally put AVM books...

but I had a day that needs this...
It was rough... no bad but rough non-the-less.
Have some youtube ...


the beatles - HELTER SKELTER
Wow I had forgotten how bad that was....


The Beatles - I Am The Walrus
There that is better...


Lucy in the Sky with Diamonds

yep, it is a beadle's kida' day...



okay that's enough. Gotta go... gotta try posting on my other blog... C-Ya!

Got one... good news.

Not me... but worth the read.

What A Great Week

What a great week.

Last week wore many of us out both physically and emotionally, plus the little excitement this morning when Pastor said his heart hurt which had the medical staff rushing around and just about put me over the edge. I feared Pastor had thrown a clot or had a major bleed. After the dust settled I’m not sure Karla was as excited as she was last night about Pastor being able to talk, but that’s just an observation on my part.

This morning we brought church to Pastor Mike. Scripture reading from Psalm 95, followed by a few comments and prayer. I thought about singing, but Pastor’s had enough trauma for one week.

At 1 A.M. this morning I woke and began to reflect on the week and was reminded of Psalm 139: 13-14 “For you formed my inward parts: you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works: my soul knows it very well.”

For 44 years, Pastor Mike’s brain has managed to navigate around his AVM, which turned out to be the size of a peach. Pastor Mike excelled at sports in High School and College in addition to his sharp mind. His brain’s ability to literally rewire the neurological pathways all took place without his knowledge or help.

We are truly “fearfully and wonderfully made.”

Tomorrow will be a very busy day for Pastor, please continue to pray for his speech, movement in his right arm, shoulder and leg as the therapists work on each of these areas. If everything goes well he could even get some broth. Pray for Karla as she has opportunity to talk with other families and share what God is doing in their lives.

On behalf of Pastor, Karla, and their family, thank you for your prayers and support. With each day Pastor makes progress and his body continues to heal. We serve an awesome God that hears our prayers.

God Bless

Dean

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I have gotten rid of my headache. HOOORRRRAAAYYYY!

Not much going on in my neck of the woods.
It's a good day.

The temp is 24 degrees. That's dang cold!!!
have some youtube... just a little...


Ziggy Marley - Tomorrow People


Lauryn Hill feat. Ziggy Marley - Redemption Song


Bob Marley & The Wailers 'Could You Be Loved'

I bet you did not know that I love Reggy. Well I do....

Okay buy something...



That's it... I'll talk at you later... Bye-bye!

ahhhh what am I doing here...

I don't know what I'm doing here... I guess I just wanted to say Hi...
and give you some youtube stuff.
Question: Should I limit my posts on the front page?
To lets say 4 or 5 posts...
oh well time will tell...

World's Worst Olympic Swimming Trial


Crocodile Dundee Theme / Music
I miss Greg... he was a Crocodile Dundee of sorts.


Poison - I Won't Forget You


Monkey - George Michael

I tried to get some Hootie and the Blow Fish... but all the good ones had a block on them.

Geo. Michale had a block on most of his stuff... most of his good stuff anyway.
here buy some stuff...

okay.. I'm gonna say bye... for now... wish me luck with this headache that I've had all day...

Got a Few... and an bit on me.

Saturday, February 14, 2009

Although I took a nap I had a very productive day. Mical and I trimmed hooves in the morning. I'll get his tonight. The goats and Prys are wormed and laundry is almost done.

Mical made me some drying racks for my fleeces. In the next few days I will finish washing fleeces and pulling the prettiest curls to sell. On Thursday I'll take the rest to the mill in Granby to be processed. That will be a huge accomplishment. I might even find time to spin. I have told myself there will be no spinning or knitting until this project is complete.

Barb is coming to Steamboat for a visit. She doesn't know it yet but I'm going to keep her busy separating curls. Wendy jumped in one day and helped. She enjoyed it immensely. It's a mindless task and has an effect much like meditation. I feel the same way about spinning.

Cody continues to leave the enclosure but has been staying on our property and hasn't ventured down the driveway to the highway. Gabby hasn't followed him and for that I'm grateful. The trench will be finished by Tuesday.

Simon is in Vegas celebrating 100's weekend. I haven't gotten a call for bail so I'm assuming he's fine and having fun. He reports to a base in Pueblo in August for the first leg of his training and moves on to Vance Air Force Base in January. I think he will be there for over a year. Most of his friends will not report for their secondary level of training until March. Simon continues to fly whenever his schedule and weather permit.

There is really no new news to report on Clayton. He now has a feeding tube and gradually they are pulling out this and that so he will have more mobility. They hope to put him in a wheelchair on Tuesday. He does not talk but does move around some. It's still unclear what level of brain damage was done and if he will see. He's had a very vacant look in his eyes but does turn to sound. He is breathing on his own but has the tracheotomy as a precautionary measure. His blood on the surface level is still not clotting and tests have not been returned. They have postponed until a later date an angioplasty. They will go into his brain and choke off remaining vessels of the AVM.

Mical took tonight's picture while he was out today. I think the falcons and bald eagles that make Steamboat their home are just magnificent.
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PRAISE THE LORD: HE TALKED!

Yes, I know that all caps means I’m yelling, but that is pretty much what we were doing in the neuro ICU at Mayo Clinic at about 7:30 tonight.

To be honest, I was quite discouraged today. Not because anything bad happened, but because it was so frustrating to not even be able to communicate. When the neurosurgical resident stopped by late afternoon, Mike had said “one” and “two,” although not in a natural voice.

As my sister and brother-in-law were getting ready to leave, several of us were in the room. Mike had been trying to do things like push the boots that prevent blood clots off of his right leg with his left leg. My mom said, “If you are bored, did you ever consider watching T.V.?” Mike then said, “Not really.” It was hard to refrain from hootin’ and hollerin’ right there in ICU!

He then proceeded to say “international” as we were for some unknown reason discussing airports. When I went in to tell him goodnight, I prayed with him. At the end he held his arm up to indicate he was praising God. I said, “Yes, praise the Lord,” to which he replied, “Praise the Lord.” Enough said.

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New York surgeon gives Texas girl with a rare disorder a new lease on life

BY Julian Kesner

Sunday, February 15th 2009, 4:00 AM

Giancarli for News

Dr. Walter Molofsky (r.) checks out Morgan Lacy, 5, who suffers from a rare brain condition.

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I'm back... today is a rough one... so I'll save you from my bad typing.
Sorry about last night... I was having a bad one there too.
Alright time to go... see no youtube either...
R