Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Saturday, March 27, 2010

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Don't feed the bears

Come over to http://www.amundsenhouseofchaos.com to see what Riley did now. Don't forget to update your Google Friend Connect with my new site! See you soon.



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Friday, March 26, 2010

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5QF and Friday Follow

Head on over to my new site Amundsen House of Chaos to see this weeks 5QF. Don't forget to update your readers and on Google Friend Connect.




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Thursday, March 25, 2010

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Dystonia

Dystonia is Colby's official diagnosis. You can't be diagnosed with Cerebral Palsy if the brain injury occurs after the age of one. Most people assume he has Cerebral Palsy. It's similar but not. Does that make any sense at all? Welcome to my world. I guess I should say Welcome to Colby's world.

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. It can be hereditary. But it can also be caused by physical trauma, infection, poisoning like lead or reaction to drugs.

There are a couple of different types of dystonia. There is Generalized,
Focal, Segmental, Intermediate and Acute Dystonic Reaction

Generalized dystonia is hereditary. It starts in childhood and works it way feet upward. Focal dystonia means there are pinpointed locations that are affected. It's usually limited to one area of the body.

Segmental dystonias affect two adjoining parts of the body. Hemidystonia affects an arm and a leg on one side of the body.
Multifocal dystonia affects many different parts of the body.
Generalized dystonia affects most of the body, frequently involving the legs and back.

Because Dystonia can get technical pretty quick here is what Wikipedia says about it.

Symptoms vary according to the kind of dystonia involved. In most cases, dystonia tends to lead to abnormal posturing, particularly on movement. Many sufferers have continuous pain, cramping and relentless muscle spasms due to involuntary muscle movements. Other motor symptoms are possible including lip smacking

Direct symptoms may be accompanied by secondary effects of the continuous muscle and brain activity, including disturbed sleep patterns, exhaustion, mood swings, mental stress, difficulty concentrating, blurred vision, digestive problems and short temper. People with dystonia may also become depressed and find great difficulty adapting their activities and livelihood to a progressing disability. Side effects from treatment and medications can also present challenges in normal activities.

In some cases, symptoms may progress and then plateau for years, or stop progressing entirely. The progression may be delayed by treatment or adaptive lifestyle changes, while forced continued use may make symptoms progress more rapidly. In others, the symptoms may progress to total disability, making some of the more risky forms of treatment worth considering.

An accurate diagnosis may be difficult because of the way the disorder manifests itself. Sufferers may be diagnosed as having similar and perhaps related disorders including Parkinson's disease, essential tremor, carpal tunnel syndrome, TMD, Tourette's syndrome, or other neuromuscular movement disorders.


The direct symptoms paragraph describes Colby to a T! I had John read it and he laughed and said that was exactly Colby. Colby goes through weeks of sleeping well and being happy and then for no reason there is some switch that is flipped and he is cranky and doesn't sleep for longer than 50 minutes at a time. His spasms (that's what we call them) get stronger and more frequent. He throws up a lot and is just generally miserable. Then for what ever reason it goes back again.

Friday we will go see the neurologist again and try to decide if we are going to go forward with the Deep Brain Stimulation. The more I read on it, the more I want it for him and the more I don't want it for him. Wish us luck in finding the answers to our questions.

More on dystonia next week. I told you its complex and it's best to break it down in sections.

If you'd like to link up a post on a medical condition please feel free to do so. It can be about any medical condition. Feel free to rant and rave or jump for joy over what ever condition you are dealing with.





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Wednesday, March 24, 2010

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Wordless Wednesday

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Playing at the mall kids area.
















Jahnna jumping from the spilled soda to the bowl of ice cream.














Riley kept walking around pretending to eat all the things. This is the ice cream sandwich. Crazy girl.

Don't forget to come check out my new site over here. I'm hoping to get this site to forward to the other one but it involves html and that takes me a bit to figure out. Please bear with me for just a bit while I get the kinks worked out. If you have bookmarked this or listed it in your blogroll please update it with the new url. http://www.amundsenhouseofchaos.com Thanks!




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Tuesday, March 23, 2010

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Changing Locations

Come check out my new site. If you subscribe with Google Friend Connect please come on over and subscribe with the RSS feed on the new site. Hope to see you soon.





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If you don't like

If you don't like the weather in Utah, wait 5 minutes and it will change.

This is what we did this weekend.














Colby with his bubble machine. He can hit the switch and make it blow bubbles. The switch is that big red flat thing next to his arm.















The girls colored on the sidewalk.














John worked on his motorcycle














Riley helped Daddy. Then she got a hammer and really helped Daddy. Daddy sent her and Jahnna out of the garage to go hammer a tree or something.














Being the obedient daughters that they are, they did.















Don't worry. No trees were harmed in the taking of these pictures.














Riley discovered her inner biker babe.

And then this is what we woke up to this morning.














Ahhh spring in Utah. Always an adventure.


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Sunday, March 21, 2010

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Getting to Know YOU

I'm sitting here with Colby listening to Dora explore outer space and I figured that joining in with Keely over at MannLand5 would be much more fun. The house other than Dora is quiet and it's a miracle that Riley is still asleep. Of course that might have something to do with her sneaking out of bed twice to go watch cartoons in Colby's room last night.

So here are the questions and the rules.

To play..copy the questions..post them..come back here and link up..

The questions..

1. What year did you graduate high school?
2. What part of your body do you neglect the most?
3. Beach house or Lake house?
4. Mac or PC?
5. Did you wear braces?
6. If you could be one person for a day..living or deceased..who would you be?
7. How many times have you moved in your life?
8. Would you rather cook or clean?

******************************************
1. What year did you graduate high school?
1995

2. What part of your body do you neglect the most?
My hands. They are always cracked and bleeding. I've never found a lotion that works for me. Trust me I've tried everything from regular lotion to bag balm.

3. Beach house or Lake house?
I'd go with beach house but John would probably kill me if I was really offered the choice and didn't choose a lake house. 

4. Mac or PC?
PC. I never could figure Mac's out. I don't know why.

5. Did you wear braces?
Yup at the same time I had huge coke bottle glasses. You can imagine the teasing I got. 6th grade to freshman year. Not to mention I also had the huge bangs. Looking back I wonder why I thought that looked cool.

6. If you could be one person for a day..living or deceased..who would you be?
I don't know. I kinda like being me.

7. How many times have you moved in your life?
A lot. 12 times. Well it's either 12 or 17. Riley just distracted my finger count and I'm not going to try to add it up again.

8. Would you rather cook or clean?
Depends on the day. Some days I like to cook and others I like to clean.






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Saturday, March 20, 2010

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Winners of the 3 Cup Book

I can't get my screen shot program to work right now so I hope you'll just trust me when I say that the winners were #4 and comment #10. I had to take out one comment because there was no link to a blog or to an email. That means that the winners are

#4 Bibi
#10 Alison

The winners have been emailed and will have 48 hours to contact me with their shipping information.

Thanks to all who entered.




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Clowns of God




I cannot tell you how many times I have prayed for Colby to be healed. To be able to do something like talk or walk again. To gain back the use of just one hand or a finger. To be able to say yes or no clearly. I have asked for him to be able to eat or for his stomach to just digest his medications properly. I have prayed for the muscle spasms to be less painful or to even just give him a break from them for one night of uninterrupted sleep.

Not one of them has been answered in the way I wanted. The only one that I can truly say was answered the way I asked for it, was for him to live. And even then I had to surrender him first before I knew he would. The things I have asked for have been for him but really they have been selfish. In truth they would make my life easier. I would be able to understand him better and wouldn't have to struggle to understand what his facial expression is or to understand what one consistent noise means over another.

Colby is happy. He gets frustrated but he has accepted his body more than I have. I don't think any mother gives up on finding the new cure or the new therapy that is going to make a difference. I know I won't. It's not that I don't accept his body it's just that I have hope that he will gain back some of his abilities and I continue to search for those answers. Through that journey though, I have had to learn to accept a higher plan than mine. I don't know if Colby's stroke was more for him or for others. I struggle to know if that can make sense to any one who doesn't have a child with disabilities or a major medical condition.

I'll probably continue to pray for things that are not a part of the plan. I seem to like to hit my head against a brick wall. But I will also cherish the small improvements he makes daily. I will love his laugh. I will hold him, comfort him and advocate for him when the way gets hard. I won't stop trying to help others see that he is just a child in a body that doesn't work the same way as theirs.

Here is a poem that was passed onto me that reminded me yet again that Colby is perfect just the way he is. I have no idea why it is called Clowns of God.


Clowns of God.
I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you ETERNAL INNOCENCE. To you he looks imperfect but to me he is flawless, like the bud that dies unopened, or the fledglings that fall from the next to be devoured by ants. He never offended me, as all of you have done. He never perverted the work of My Father hands. He is necessary to you. He will evoke the kindness that will prompt you to gratitude for own good fortune....more....he will remind you everyday that I am who I am, that My ways are not yours, and the smallest dust mite whirled in darkest space does not fall out of my hand. I have chosen you, you have not chosen me. This little one is my sign to you. TREASURE HIM.








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Thursday, March 18, 2010

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Friday Follow

Friday Follow

The Trendy Treehouse


Bea's Gift Baskets

My Little Life

Welcome to Friday Follow and Five Question Friday

I'm so glad you decided to stop by the chaos we call life!

If you get a chance make sure you enter my 3 cups book review and giveaway.

Also if you know someone who has a medical condition that you'd like to raise awareness for please join in on the blog hop.

Also today is 5 question Friday. Here are the questions for this week. When you are done head on over to Mama M's. She rocks and you will love her!

1. Have you ever had a celeb sighting?

Lots I grew up by Oakland and San Francisco after all. The latest one though was Montel Williams. I was his bank teller one day during the Sundance Film Festival. That was over 5 years ago.

Oh wait never mind. Some disney celbrity girl came to Colby's hospital room on a film promotion while he was there. I can't remember her name.

2. What temperature do you keep your house?
68 degrees during the day 65 at night.

3. Do you notice dust at other peoples homes?
I don't know. I've never really thought about it before. I guess I don't.

4. What's the worst job you ever had?
A short order breakfast bar cook for JB's. I worked there for three weeks while starting another job. As soon as I had my first paycheck I quit. Five other people quit the week I left. It was a horrible place to work.

5. What is your most sentimental possession?
I have a key chain my uncle gave me right before he died. He was 29 and I was 16. I also have my teddy bear my dad gave me for my first birthday. It was bigger than I was.

There you have it, I hope you have a great Friday!


MckLinky Blog Hop





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E. coli part 2 and medical blog hop

So you think maybe you might have E.coli posioning. You have bloody diarrhea and the stomach cramping. What do you do next. Well don't go get yourself diagnosed with appendicitis and let them remove your appendix. That would be bad. When they take your appendix out they give you an antibiotic just in case it might have ruptured a little. They don't want you to become septic and get an infection after all.

The only problem with that is that when you use an antibiotic it kills all bugs. Not just the bad ones. E.coli is fought by the good bacteria in your stomach. An antibiotic kills them. THat's why when little kids get an antibiotic for an ear infection or something they get diarrhea. It kills all the bugs in their stomach. So you give them a probiotic or some yogurt to get that good acidophilus growing again. So how do you treat E.coli?

Once again for the record this is not medical advice. I am not a doctor. I'm pulling this information from other websites and forming a condensed version. If you think you have E.coli posioning consult your doctor immediately.

Here is what the Center for Disease Control has to say on treating E.coli posioning.

Non-specific supportive therapy, including hydration, is important. Antibiotics should not be used to treat this infection. There is no evidence that treatment with antibiotics is helpful, and taking antibiotics may increase the risk of HUS. Antidiarrheal agents like Imodium® may also increase that risk.

So basically if you have stomach cramping, bloody diarrhea and nausea you should stay hydrated. That's why I took Colby to the emergency room. He was becoming dehydrated. He was sleeping all day and wouldn't drink anything.

The best way to treat E.coli posioning is to never get it. This is what the CDC has to say on that.

1. WASH YOUR HANDS thoroughly after using the bathroom or changing diapers and before preparing or eating food. WASH YOUR HANDS after contact with animals or their environments (at farms, petting zoos, fairs, even your own backyard).
2. COOK meats thoroughly. Ground beef and meat that has been needle-tenderized should be cooked to a temperature of at least 160°F/70˚C. It’s best to use a thermometer, as color is not a very reliable indicator of “doneness.”
3. AVOID raw milk, unpasteurized dairy products, and unpasteurized juices (like fresh apple cider).
4. AVOID swallowing water when swimming or playing in lakes, ponds, streams, swimming pools, and backyard “kiddie” pools.
5. PREVENT cross contamination in food preparation areas by thoroughly washing hands, counters, cutting boards, and utensils after they touch raw meat.


We played in the water that ran through a cow pasture. I don't know if Colby swallowed the water or not. I imagine he probably swallowed some of it. Jahnna and Colby were soaking wet. It was a hot July afternoon. Then they got out and we ate peanut butter and jelly sandwiches. So either way it was on our hands and then we ate food. There was no possible way to know the water was contaminated.

I grew up around cows. I have swallowed my fair share of cow manure. Not intentionally of course but when you have a job pushing cows at a sale yard you are going to eventually get some in your mouth. I raised all kinds of animals growing up. I drank sodas that had been cooled in a spring of water that cows drank out of and grazed nearby. Shoot we even put watermelons in the spring so they'd be super cold after we fed the cows. Why didn't I get sick before now? What was the difference? E.coli lives in cattle intestines so theoretically my odds of getting E.coli posioning were much greater when I was younger than now.

I found a fascinating article written by Carl Zimmer on the Scientific American website. It's pretty technical but here's a small part of it.

The kind of research that Lenski is doing is important not just to answer some of the basic questions about life but to answer some important questions about our own health. E. coli and other bacteria can make us sick, and in World War II scientists developed antibiotics to kill them and it seemed like magic bullets. The problem was that the scientists discovered very quickly that E. coli and other bacteria were becoming resistant. They were evolving resistance because the mutants that could resist a little bit were doing better than the susceptible ones and over time, it became more and more resistant.

When I was talking with the CDC here in Utah about Colby and Jahnna, the lady said that she thought the E.coli bacteria of today could roughly be considered to be 100 times more resistant than the E.coli of 20 years ago. She also said that was her unproven opinion and that in reality it was probably much more resistant than that. That is why I never got sick before. It's evolved. I guess that's life. You have to constantly change or die. Maybe that's a bit extreme but it's kind of how I look at things.

I think next Thursday I'll talk a little bit about dystonia and what that involves. Colby's had a pretty rough week from it and we're waiting on the dystonia doctor (neurologist) to call us back about the deep brain stimulation so I suppose it's as good a topic as any.

Here is the MckLinky if you'd like to add your blog post on a medical issue and raise awareness for what ever you are going through.







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Wednesday, March 17, 2010

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Wordless Wednesday 3/17/10

Happy St. Patrick's Day! 

Riley has been screaming at me since she woke up thirty minutes ago. I think I'll leave you with her picture. Hopefully it will make me smile and I won't  want to wring her neck all day. This is the scary ghost dance and the outfit she chose for herself that day. I think both are equally frightening.




Head on over to 5 minutes for Mom to see other Wordless Wednesday Posts.



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Tuesday, March 16, 2010

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Waiting, waiting and more waiting

**************************************
Update - The x-ray came back fine. No twisting, no blockage, no reason for anything. So typical when it comes to Colby. So my new decision is who do I call now? I just got off the phone with my wonderful friend Sara who so conveniently for me works for the neurologists office. We haven't heard if we're going forward with the deep brain stimulation or not. Hopefully I'll hear something this week. Tomorrow morning at 9:00 I'll call the GI doctor and see if she has more tricks up her sleep because the drug that was helping before isn't working any more.

My own totally untrained opinion is that the dystonia is causing the vomiting. So short of keeping him completely drugged and lethargic his muscles will continue to contract and spasm and cause him to vomit forty times an hour. Forty may be a slight exaggeration but over ten and possibly less than twenty. I just gave him some clonidine which will relax him because it lowers his blood pressure. This will cause his muscles to relax and I'll have approximately 3 hours of vomit free time.

I hate doing that. One because it just stinks to have to drug him for any reason. Two it's messing with blood pressure which with kidney damage is always a fine line to walk and three because it can cause rebound high blood pressure. But his poor little face is burnt and red because of all the stomach acid he's thrown up today. His ulcer is aggravated and he's now throwing up blood. Seriously four year olds should not throw up blood. It's just not right.

Well it's been ten minutes. He's starting to calm down and he may even fall asleep. I know he needs the break. The last thing we need is to give him more ulcers or even eat away the lining in his esophagus. Something I actually worry about considering my uncle died when he was 29 because his cancer started in his esophagus. I don't need to add that to the list of things I have to stress over.

For now the sun is shining, Colby has quit screaming, I've rubbed some thick salve on his cheeks and I'm going to sit here and listen to the birds chirping outside my window.
**************************************************



I'm waiting to hear from the doctors office. Colby's feeding tube has been backing up and exploding tube feeds out if for about a week. It's a new feeding tube. Only three weeks old. They are supposed to last six months to a year. To change it I have to drive two hours to Salt Lake City and go through the special procedures lab. They don't have one of those up here at either hospital. It's kind of a pain. a four hour trip for literally a five minute tube change.

I called the doctor up here to see if maybe they would just order an x-ray here with a little contrast in it to see if his intestine is twisted (major ordeal, bad thing) or if his tube just got blocked with the original contrast they put in it or if the tube is just faulty.

Colby is throwing up more than usual and is acting like his stomach hurts. Right about now is when I wish those things they had on Star Trek where they just swiped it over the forehead and it told you what was wrong was an actual invention. It would be so much easier. Could someone get on that? Please! Actually "they" are on it. All those really smart people who do research have actually started mapping brain waves and identifying what they mean. If I were really together I'd find the awesome article I read on it and link it up. But since I'm waiting, impatient and kind of irritated I don't want to. Sorry I'm kinda being a brat like that today.

Here's the fun part when it comes to Colby. If they just order the x-ray up here there will probably be some problem that will require the drive. If I drive to SLC and they take a look down there, there will be no problem. See my dilemma? Seriously I need that mind reader. It should be standard issue. Oh your child is non-verbal here ya go. Just swipe this over his forehead and it will tell you what's wrong. I think it would be great. Of course then you'd have a lot of moms saying their kids were non-verbal when they were like three months old just so they could get one. Hmmm maybe they should be standard issue at birth? Nah that would take the fun out of learning what your kid is like. I've made an executive decision it's only for non-verbal kids. And now that I'm rambling tell me what you think? Would you want one if you knew your child was going to grow up non-verbal?




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Monday, March 15, 2010

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Macaroni Kid


********************************************************************
A HUGE thank you to Helga for letting me know the link isn't working. I have to run Jahnna to school so I'll work on that in a minute. In the mean time you can go to
http://logan.macaronikid.com
and it should bring up the website. If that doesn't work let me know. Thanks again Helga!
*********************************************************************

Have you heard of the Macaroni Kid Newsletter yet? It's a community based newsletter that sends you the activities available in your area on a weekly basis. It's a great work from home opportunity for someone who is active in their community.

You can get free perks for being a Macaroni Kid Publisher Mom. Go to events free, get free camps for your kids. The support from the Macaroni Kid team is unbelievable! Nicki has been great! She helped me get my site up and running while she was sick. That's some dedication to their publisher moms.

Come check out my site. Just type in http://logan.macaronikid.com/. Sign up for the newsletter even though you don't live in my community. It will give you an idea of what it is and will let you see if it's something you want to bring to your community. Have any questions? Send me an email at erina@macaronikid.com





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