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.

Sunday, June 28, 2009

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Bill of Rights for Parents of Special Needs Kids.

I'm stealing this from Michelle who stole this from Ellen who I don't know. I did ask Michelle if it was ok to pass on before I did. So I guess in theory it's sharing and not stealing! I don't drink wine so I feel free to substitute Pepsi in when she says Pinot Grigio. I think it should be passed on to everyone so they can understand more of what it's like to have a "special" child.


We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
(Compiled in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

Friday, June 26, 2009

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Why paint is no longer allowed



Jahnna was painting yesterday while Riley took a nap. She forgot to put her pictures up on the counter out of reach. Riley decided she'd like to paint too. I've decided that paint, markers, finger nail polish, scissors or anything that can be used to destroy my house in five minutes or less is officially banned! All right not really but it sure sounds like a good plan.



In case you are wondering what this fabulous color is called, it's I stole my sisters pictures and mixed them all together brown. A mouthful I know but appears to be the most popular color in our home!

John and Jahnna decided to build a bird house together out of some wood we had laying around. So here is the fun process.






Jahnna was cutting up newspaper to put inside the bird house.






You know you are going to grow up and be the worlds most talented painter when you can paint with two paint brushes at the same time!






Jahnna was very nice and let Riley help her paint the bird house. No tears involved or anything. They had a lot of fun. I think our birdhouse is the most colorful one I've ever seen.





Jahnna really wanted her picture taken with a piece of bark. Not sure why but here it is.


Daddy hanging up the masterpiece.


The finished product.

Wednesday, June 24, 2009

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I fought the....

Cat? Pen? Either way Riley did not win with either of them. The cat scratched her ears and eye yesterday afternoon. We stopped to talk to some neighbors around the block and Riley thought it would be fun to play with their kitty. In all fairness she was warned the cat didn't like kids. I was talking and thought she was playing with the big brown lab who LOVES kids. Then I heard her scream. She is one tough cookie though. She cried for all of 30 seconds. Got blood all over my shirt and then decided she needed to go back and pet the kitty again. Some kids just don't learn. I grabbed her up kicking and screaming and begging to go back and pet the kitty and took her home to get some peroxide and a new shirt.

The pens would be from a to quiet morning and mom not paying attention to the quietness. Actually I left her and Jahnna downstairs reading books and came up to get Colby who was waking up and yelling for me. Jahnna was reading a story to Riley when I left. 15 minutes later Riley came up to show me how pretty she was. You just gotta love the adventures two year olds have.







Monday, June 22, 2009

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Night Nursing

I have officially survived my firs weekend without night nursing. I'm still not sure how I feel about it. On one hand I am so excited that tonight I get to sleep. Last night Colby was up for all but maybe 3 hours. He went to sleep at his normal time but we had a little visitor come to our home. Cousin Tessa came for a visit with her mom and dad. She is a cutie. She wanted to kiss Colby so bad. She told my brother Jason that Colby loved her kisses and he did. So much that he didn't want to go back to sleep for two hours after they left. (Don't worry Nicki I'm not complaining. I think it was so sweet she was kissing him and holding his hand. Totally worth it for him to get to spend time with her. Plus you guys got to see him awake and happy!) Really I think he just slept so long yesterday afternoon that he didn't feel the need to sleep last night. I on the other hand really missed the sleep I've already gotten used to after one week.

On the flip side of the coin. I don't want to go anywhere during the day. I know I'm being selfish but I just don't want to haul out the wheelchair and try and keep Riley from runnin away and getting squished by a car or something. I should do better about taking my kids places during the day and doing things but it's a challenge and somedays I am still not up to it. So we'll give it another go this week and see what happens. I think that in July when he is going to school 3 days a week it will be a little easier and then during the school year when he is at school 4 days a week it will be even easier. I'm not counting down the days or anything. I guess I should have done a not me monday after all! I didn't think I had any in me after this splitting headache/cold/possible swine flu I've got going on.

On the swine flu issue. I was talking with one of the kidneys doctors friday evening. Had some concerns about his new ace inhibitor and allergic reactions. Anyway she told me I sounded like I had a cold and I said I did. (Figures the week I get more sleep I get sick!) Anyway she said she had just gotten a memo that said like 85% of all viral stuff going around in Utah right now is actually the flu. Of that 85% 96% is swine flu. I can't do math today but that's something like 84% of all people who think they have a cold or allergies right now actually have the swine flu. Fun times right? She said the only reason people are dying from it is if they have some underlying condition which I don't have but I hope I don't pass it on to Colby. So I'm being extra precautious. So if you think you have a cold stay home. That's my sound medical advice since in the last week I apparently gave myself a doctorate! And on that note I am officially done dispensing medical advice.

Saturday, June 20, 2009

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Kids say the funniest things

We've had quite a week this week. For the first time in almost two years I have been able to sleep at night. And boy have I slept. Deep and fast. The dreamless kind. It's been heaven. The true test will come this weekend when I don't have a nurse and I have to get up with him. We'll see if my body still remembers how to do it.

The flip side to that is that everyone has to go with me when I go anywhere. We make quite a sight walking through a store. I really need to get a picture of it. Colby is loving it. He doesn't think that his nurse should be here even at night. He laughs when I ask him if he wants mommy to stay with him and then says yes.

If you noticed the name change to the blog it's because I've been doing the Family Time and Money Freedom course. Since your supposed to envision the things you want in life and make positive goals instead of negative ones I figured it would be an easy switch to change the blog name. If you've been to our house over the course of the last two years you would notice that indeed our home has gone from a state of total chaos to a more manageable level of chaos. I figure if I remain optimistic and positive eventually my house will be a home of peace. If you'd like more information on the FTMF course you can click on the jackrabbit link in the upper right corner. I'm loving it.

On to the funny things my kids have said this week. Oldest first! Jahnna wants to make a bird house with her dad. He had some plywood cut up into perfect size pieces for a birdhouse and she has convinced him to make one. As they are talking about the things they will need he said screws. Jahnna's face lights up with a big grin and she says "Screwing! I love screwing! I'm good at screwing!" John looked up at me and couldn't stop laughing. Then she says "Well I am good at screwing" I lost it then.

Colby has woken up every night this week at 10:30. Not normal for him but his tummy has been a little upset. We were getting ready to go to bed two nights ago and heard him laughing in his room. We leave the TV on low so he has some background noise at night and a light for when he wakes up. Plus it usually bought me about 15 minutes of sleep before he'd start yelling for me. Anyway he was laughing at Wow Wow Wubbzy. He's got this long wavy yellow tail and one of the characters on there says it's a kooky tail. So we came in and asked him what was so funny and he said "Kook tal" then starts laughing again. It's always a huge thing when he says anything and it even sounded like what he was wanting to say so we were pretty excited for him. He said like three more times before he fell back asleep. I know he's going to speak again it's just hard to be patient.

Riley must have picked up her funny saying from cousin Allie who was here in May. She started coming up to us to hold her and saying "I hold you" It's so cute especially because she's never been a super cuddly kid. She's also learning her colors and counting. But if she gets it wrong and you say "it's pink" instead of her "it's purple" she argues with you until you say it's what ever color she said it really is and then she says "no mom it's pink" and you have to say "Oh pink" and then she comes back with "right pink" like it was you who was mistaken all along. She was also ordering kids around at the doctors office like they weren't 4 to 6 years older than her. She was quit dismayed when they wouldn't sit in the chairs she commanded them to. She had them backed into a corner telling them "Sit please sit!" I came to their rescue after seeing the terror in their eyes. Thankfully I got called in a few minutes later.

That's about it for now. They said a bunch of other funny things but I forgot to write them down so this is all I've got for now.

Wednesday, June 17, 2009

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Stroke Survivor Poem

Here's a poem written by a girl after her father had a stroke. I liked it so I thought I'd share with you.

A STROKE, OUR JOURNEY
THE DAY BEGAN AND ALL WAS FINE
WHAT WENT WRONG, I NOW SHOW SIGNS
I AM TROUBLED, BUT HAVE NO PAIN
HELP ME UNDERSTAND, PLEASE EXPLAIN

I AM HERE, BUT NOT THE SAME
I MUST WORK HARD TO HELP REGAIN
DO NOT LIMIT YOUR OWN SUCCESS
EMOTIONS RUN WILD, YOU MUST REPRESS

PHYSICAL SIGNS FOR ALL TO SEE
DOES NOT DEFINE WHAT IS ME
I MAY NOT EXIST AS I ONCE DID
I WILL SURVIVE, LET ME LIVE

YOU MUST KNOW YOU ARE NOT ALONE
COME JOIN US, OUR SUPPORT HAS GROWN
WE ARE ALL AFFECTED, JUST LOOK AROUND
CAREGIVERS AND FAMILIES WITH LOVE SURROUND

I MAY NOT REGAIN WHAT I HAVE LOST
DON’T HOLD ME DOWN AT ANY COST
FRUSTRATION, DEPRESSION AND HAPPINESS, TOO
WE ALL HAVE STAGES WE MUST GET THROUGH

TELL ME I CAN’T AND I MAY FAIL
ENCOURAGE ME AND WATCH ME SAIL
A LONG ROAD AHEAD, I’M FULLY AWARE
THERE IS NO BOOK TO HELP PREPARE

OUR JOURNEYS ARE SIMILAR, BUT EACH OUR OWN
OUR TRAVELS ARE TOUGH WITH GUIDANCE I ROAM
THE BATTLES ARE MIGHTY, BY GROWTH WE MEASURE
LIMITATIONS WILL TARNISH THE RICHES WE TREASURE

CHANGE APPEARS TO BE SLOW, BUT YET IS STEADY
WITHOUT FOREWARNING, I WASN’T READY
TO WIN THE WAR, WE MUST BE STRONG
PROGRESS AND RESEARCH CONTINUES ALONG

SOMEDAY WE MAY CURE OR HELP TO PREVENT
THE DREADFUL CAUSE TO SUCH AN EVENT
UNTIL THAT DAY HAS COME AND GONE
AWARENESS AND STRENGTH MUST CARRY ON


By Kathee Ivey
Dedicated to my hero & Dad, J. David Olsson
A stroke survivor since 4-9-98

Tuesday, June 16, 2009

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Night Nursing

Last night was HEAVEN! I haven't slept that soundly in almost two years. Well unless you count the three months I lived in the Mariott while Colby was in the hospital and that was only because I had mono and couldn't physically stay awake and deal with the stress. So I don't count that as a really restful sleep. I woke up for about 5 minutes when Colby decided to begin his nightly party at 3:00. Shannon took him downstairs and I went back to sleep. Did I mention it was HEAVEN. Oh sorry to repeat myself but it was. I'm sure I'll get used to sleeping again and then have a hard time the two nights I will have to get up with him. We get 40 hours a week of nursing care so that's only 5 nights a week. I'm excited that I finally was able to reach a point where I felt comfortable with this type of care. I think it will be a challenge during the day not to have help but I'm grateful for the opportunity to have help at night. It was time.

Monday, June 15, 2009

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Not Me Monday Again



Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Wow I can' believe it's been a week since I posted last. I would never not post for a week because it was a little hectic around here.

I wouldn't not post because I was busy doing the Family Time and Money Freedom course by Leslie Householder. I wasn't so excited to be looking at my goals in life that I completely forgot to do other important things like write about my week. I wouldn't do that. Not me! If you'd like to know more about the FTMF course you can always click on the Jackrabbit Factor link on the right side of this blog.

I wouldn't crack an egg for dinner dumping the egg onto the counter and then put the shells in the frying pan because I was so tired from not sleeping. Then I wouldn't proceed to watch the egg on the counter for almost a full minute wondering why it wasn't cooking. That would be a little to much sleep deprevation going on and it wouldn't cause me to finally agree to night nursing. (Thank you Shannon! I'll see you tonight at 11:00) We'll see how it goes and make a decision on whether or not to stick with it after a couple of weeks. Anyway I wouldn't do something that crazy not me!

I also wouldn't call the guy selling the Dynavox system we are working on getting for Colby and make a nuisance of myself because I don't have patience for insurance billing. I wouldn't get super excited that all the paperwork has been submitted and we should have a computer that will talk for Colby in about a month. Now if he will cooperate and try and learn how to use it maybe we can finally figure out what he wants when he gets upset.

That's about it for Not Me Monday. Not because there wasn't more but because I can't remember anymore. When I get this tired my short term memory is shot! Hopefully starting tonight I'll get a little more sleep and I'll be able to make a little more sense. But I'm not hoping for that! Not me!

Monday, June 8, 2009

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Not Me Monday


Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I would never let my two year old get up at 3:30 in the morning and stay awake watching TV until 5:00 in the morning because her brother was yelling in the room next door. Nope not me! I would then never let her sleep in until 10:00 in the morning because she was awake for an hour and a half in the middle of the night. She would never fall asleep on her brothers bed later that same day because she was so exhausted. This never happens in my house! Nope not me!




I also would not let her sleep on a soaking wet pillow with no pillow cover that you see in the picture. Colby's cup of water dumped on it in the middle of the night. He was soaked it was soaked the bed was soaked. I wouldn't just take the pillow case cover off and let him fall back asleep on it instead of getting up and getting a new pillow and pillow case. Not me I wouldn't do that.





I also wouldn't put Colby on the floor that same evening and walk out of his room leaving him to scream for the next half an hour. (Of course I checked on him every few minutes. I knew nothing was happening to him since he was still screaming at me!)
This is how I found him a half hour later watching Diego laughing and calmly relaxing with his hands behind his head. I would never do that nope not me!

He was quite mad at me again and again I don't know why. I think since we are playing with his meds again it's not working. That's a whole other post but I'll try and summarize. We added three medications at once and tried to reduce one all at the same time. So I don't know if it's one of the one's we've added or the one we are trying to take away that is making him so upset. Today has been a much better day though since I took him off of his clonidine patch and just gave it to him through his feeding tube. I think I might have found the culprit but I'm not admitting it yet.



And finally I would not at the very last minute two weeks after my daughters birthday throw her a very hastily put together birthday party. (Dang that was a mouthful!) It turned out to be a huge success and she said she had a wonderful time but I would most definitely plan things out a little bit more in advance and make sure I had things a little bit more organized. After making her a chocalate cake with strawberries in the middle layer and marshmallow butter cream frosting I wouldn't forget to put the cake in the refrigerator for the next 4 hours so that the frosting melted all down the sides and the strawberries on top fell off. I wouldn't do that nope not me! Half an hour before the party starts I wouldn't look at the cake realize what I had done and swipe the frosting back up the side and put it in the freezer to set quickly. That would be silly. I wouldn't do that, or would I?

Saturday, June 6, 2009

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You know you have a brain injured child when.....

You have these things in your home


This monstrosity of a car seat is in your basement instead of your car because you can't fit all three kids in the back seat if it's in the car.


You have a special tomato. Yes that's the name of the chair. It's a long story by the people who developed it.


This is in your downstairs living room for therapy.


This is another chair in your house. It's called a bolster chair. It's supposed to help with his hips. He hates it. Riley uses it to stand on and color the walls.



This is your food storage for one child.


This is a crawler that is stacked with medical supplies. Obviously he uses it alot.


A pony walker. Again obviously he uses it alot if its stored under a table with toys all around it.


Nursing records, therapy routines in a binder, storage cases for the o2 sensor and suction pump.


More medical supplies.


Boxes of bags for his food that goes through the feeding pump.


A wheelchair




A calendar with blood pressures oxygen saturation levels, pulse rates and temperatures. Doesn't everyone keep records of that?


Feeding pump on the iv pole, oxygen sensor and suction pump to suck out all his mucus. Yummy.




My refrigerator. To be completely honest there are two months worth of meds there. I am using up the bottles on the bottom and then the ones on top will move down in two days.


One side of a cupboard in my kitchen.


One drawer in my kitchen. The syringe drawer. What you don't have a drawer full of syringes? Why not?

I totally stole this idea from MckMamma you can see her post here http://www.mycharmingkids.net/2009/06/well-and-heart-stuff.html and I give complete credit to her. She takes much better pictures than I do. Several people have asked me about how I store stuff through emails so when I saw her post I thought that would be a great way to show that I don't really store stuff so much as I stuff stuff where ever it will fit. Anyway that's how we do it here in our chaotic home.

Monday, June 1, 2009

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Not me Monday



It's Monday again so here we go!

I did not just veg out in front of the computer for the last hour and tune my children out so I could get a small break. Not me I would never do that!

I did not reduce Colby's artane prescription twice in one weekend because he was screaming anyway. I would stick to the plan and go slowly and I always follow doctors directions. I would never do that. Not me!

I would never get meds into syringes and then lick my finger and lower my own blood pressure in doing so! Not me!
(Actually this was an accident and it took me a few minutes to realize why I was light headed. Now you might understand why I say that taking any one full dose of Colby's medications would knock me out or make me end up in a hospital. One smudge of atenolol on my finger lowered my blood pressure and he gets 3 blood pressure meds! Good Grief!)

I would never put my two year old to bed in her clothes, socks and shoes a sticky banana mess because she was so tired she was screaming at me and wouldn't stop. After she was asleep I wouldn't sneak in and take off the socks, shoes and shorts and give her a bath in the morning. I would never do something like that. Not me!

I'm sure there are many more but it is monday morning after a very long weekend. See below post if you haven't read it. Anyway that sums it up for me. I would post a picture or two but my camera seems to have taken a walk to the Johnsons home in their diaper bag. I guess we have the same camera!