December 31, 2009

2009, Husband's Retrospective

2009 was a crazy year. Here is a timeline of assorted events that took place this year. There is a rough chronological order to this but some things are probably out of order. This is all from memory, I didn't take the time to actually check dates.
  1. I started going to the gym ~3 times per week to compensate for 8hrs at a desk every day.
  2. Coen was born on January 16th. Our second child and first son.
  3. Kathy came out and stayed with us for...a month?
  4. My employer laid off about 10% of our staff. I was fortunate to keep my job and all of my employees.
  5. I built a website for a company called Pharmaca.com. It was the largest freelance undertaking I've ever done.They only used it for a few months before half of their staff turned over and they ended up rebuilding a new website for eCommerce (which hadn't been a goal of the project that I did for them). This was also an interesting project in that it was entirely remote. I never met any of the clients in real life.
  6. We had a family reunion on my dad's mom's side of the family. The first ever, I think. It was great to see old videos and pictures of my dad and other family when they were my age or younger.
  7. The economic crises of the country got me focused on eliminating some of our debt. I got an old 1994 Saab that I got for free running and sold our 2006 Xterra, saving us nearly $400 per month.
  8. My employer changed our health insurance plan, causing our health insurance to go up about $400 per month (that's what happens when you try to get ahead :P)
  9. Danny and Becky visited over Spring Break
  10. Nora learned to stand.
  11. We had an awesome 4th of July in Laramie.
  12. I built a planter in our front yard for flowers.
  13. I entered a Microsoft-sponsored competition to build a video game from the ground up. I spent several months working on my submission and learned a new programming language (C#), new object-oriented programming concepts and lots more. I didn't place in the competition (my submission was pretty mediocre, honestly) but I had a lot of fun and learned tons of valuable skills.
  14. Our family doctor gave us a referral to a Children's hospital to have Nora tested for Autism. Nora endured multiple tests. We went home.
  15. Rebuilt a fairly-major web property for my employer using what I learned from the large freelance project.
  16. We found out that Nora has Rett Syndrome. Many specialist appointments and trips to Denver would follow.
  17. Guitar-building-legend Les Paul died. I bought a Gibson Les Paul electric guitar on a trip to Denver for Nora. This was mostly coincidental with Les Paul's death as I have wanted a Les Paul guitar for some time.
  18. We bought a Canon Rebel XSI digital SLR camera and have shot tons of neat pictures that we have been too lazy to post on our blog. Sorry folks...
  19. Kristy celebrated her 28th birthday in August and I celebrated mine in September.
  20. We decided to get Nora's tonsils out due to breathing problems while she slept.
  21. Kathy came out and stayed with us for over a month, helping out as Nora recovered from her tonsilectomy.
  22. Rich and Dori came to visit
  23. Kristy and her mom went to Texas to visit family. I stayed home by myself :(
  24. We turned our basement into a play place for adults and kids and built Nora a swing for therapy and simple enjoyment.
  25. I started building a new website around a niche community, developing unique software that doesn't exist online yet (as far as I can tell).
  26. We took the kids to Harvest Farm, a fall-focused farm that had pumpkins and all sorts of stuff. They loved it.
  27. We had some Halloween fun with the Painter and family
  28. Coen got the Swine Flu (not totally confirmed). We all had colds and such. I took Coen to the emergency room with a high fever, got home at 2:30am. It seems like the whole family was sick for at least a month! We missed all but Laramie special meeting.
  29. GetOutside visited
  30. We had a small Thanksgiving at my parents house. Dad was gone bird hunting so it was just us, mom and my cousin.
  31. I wrote a fairly-major program that can take screenshots of a list of websites. This was one of the more-significant applications that I wrote this year, it was built to gain competitive intel for online retailers.
  32. I worked hard to get a major update to the website I built out-the-door by December 16th. A friend in Laramie started helping out with some programming tasks.
  33. We spent a whole weekend in Laramie with the Stidolph family. It was fun to stay somewhere else as most of my vacation had been used for doctor appointments
  34. Leaving the kids with mom and dad, we escaped to Denver for some nice alone time for our 5th anniversary. We came back for a Christmas dinner with my family.
  35. Danny and Becky came to visit for a few days.
On this last day of the year, looking back, I have to say this was one of the biggest and, at times, most stressful years of my life. We had our second kid, a lot of pretty big things happened at work and Nora was diagnosed with Rett Syndrome. Here are the highlights and low points, not in any specific order...

High Points:
  • Watching my kids grow and learn new things. Being with the kids, but also:
  • Getting away from the kids occasionally...
  • Stride. If any Stride folks read this, you rock and we appreciate everything you do for Nora.
  • Spending time with my family, even though it seems like a lot of those times were at the doctor or sick
  • Facing things with my wife, understanding each other more, faults and all. (Her faults. I don't have any of course :P )
  • Having friends and family on both sides that are engaged in Nora's therapy and progress.
  • Successfully completing a competition in a programming language I barely knew when I entered it.
  • Building 3-4 websites and tons of small applications to solve various problems.
  • Working out at lunch time (stress killer)!
  • Getting a diagnosis for Nora so that we know what we are facing
  • Driving a free car that goes fast, gets ~24mpg and only costs $20 for insurance!
  • Getting out of the house to share good times with friends/family
  • Shooting pictures with our new camera, playing my new guitar!
  • Worker visits
  • Art teacher friends
  • Bert, Aaron, Candy, Geek Chad, Traveler Chad, Painter Chad, Lisa, Andy, Kate and other Friends, their kids and our families

Low Points:
  • Finding out that Nora has Rett Syndrome
  • Paying for expensive health insurance premiums and still fronting ~$8000 out-of-pocket for medical expenses.*
  • Coen getting Swine Flu (scary!)
  • Not getting to go hunting (although, I didn't make it a huge priority so it's sorta my fault)
  • Missing our annual family camping trip
  • Kids that don't want to sleep
  • Stepping on sharp kids toys with bare feet
  • Toys that make noise
  • Cats**
  • Friends that lost loved ones

Have a happy new year.

* This is mostly irritating because it's only going to get worse and instead of industry reform, the burden will simply be spread upon all tax payers.
** The fact that they exist doesn't bother me. Only that they happen to exist in my house.

October 29, 2009

Fall Fun at Harvest Farm


Hey, Llama, who's your mama?

Llama: "Are you my mama?"
Cow : "No! Shhhh...
Goat: "Yeah, shhhh. This is no time for questions. Now, be quiet, so we can give thanks.
Fall: the time for picking out pumpkins, jumping in leaves and taking rides in home-made barrel trains decorated like cows pulled by a tractor...and getting dirt in your teeth from the dust blowing in your face while your rear end turns numb as a result of being too big for the home-made barrel train decorated like cows??
Nora and Hadley take a look at their new home town... just their size.
Hubby and I go for a romantic stroll in the toddler corn maze... I swear we didn't get lost.

The corn bin! Coen and Nora made us look like we starve them, both trying to eat the corn.Nora got to kiss the sheep... goat... whatever this thing was it was sure cute.
This is the out-take of our romantic walk in the toddler corn maze... Or maybe the other one was the out-take... I can't remember. After all, this one actually has a toddler in it.
The look of pure glee on my face shows how much I am enjoying this. Smashing pumpkins is as fun as it looks.
Our newest family picture. Not bad, except the woman in the background is ruining it... she is not related...at all.

I will also post some pictures of our Texas trip, but felt the need to post a FALL post as "fall" is more like winter since we have, like, a foot of snow at least. So, coming soon are Texas pictures.

September 3, 2009

Nora Gets Her Tonsils Out


Nora got her tonsils out this morning. We had to be at the hospital at 5:30am to get everything ready for her surgery at 7:30. She was pretty cheery, if a bit hungry, as we waited for everything to happen.

The surgery went really well. We were worried about our little baby but she came through just fine. She's currently sipping on cool water, eating jello and watching some videos on the laptop. When she first came out she was really zonked but she's perking up now. Apparently the next few days will bring more pain and discomfort but she's doing okay right now.






September 2, 2009

HAPPY BIRTHDAY, HUBBY!!!!

No, Honey, you don't look old. Just a few wrinkles here and there. Eyes a little deeper set. No one will notice. You look great! Oh, wait. This isn't you, you say? Sorry, I must have had this 90 yr old man mistaken for my 28 yr old man. You can see the resemblance, right? This one below just isn't black and white like the one above. Anyone could have made the mistake... and he's holding a fan in this one.
Pretty good lookin' if you ask me!! Happy Birthday, Hubby! Hope it's a good one.

August 24, 2009

Mahogany Gibson Les Paul Studio


Astute musicians amongst you will know that the guitar legend, Les Paul, just passed away. I've wanted a Gibson Les Paul for quite awhile. I originally didn't like them but while I worked as a guitar tuner for a Wisconsin band one summer, I really built an appreciation for the playability, versatility, beauty and history of the Les Paul.

Today (well, it's almost yesterday at this point) we had an appointment for Nora. On the way home we stopped at one of my favorite places: Guitar Center. I've had my eye on various versions of the Gibson and Epiphone Les Paul guitars. The Epiphone versions are similar in playability and about 30-50% of the cost of their Gibson brethren but really lack in both aesthetics and hardware quality (which is very important in an electric).

Long story short, I fell in love with a solid mahogany Gibson Les Paul studio and had to take it home with me. It is really a beautiful guitar with an excellent sound and very, very nice playability.

I had to post this tonight because some of my fellow guitarists saw my Twitter and wanted to see pics! Here you are my friends...the pictures don't tell how it feels to play but it shore is purty too :)


August 22, 2009

Coen the Libwawian

So, our last post was a bit depressing. Here's a funny, cute pic of Coen to lighten things up a little! Unfortunately I only have a low resolution version on hand. I might replace it later if I remember...

August 10, 2009

Rett Syndrome

We got a call from Nora’s doctor on Friday night. We have been waiting for results since her appointment on July 7th. At that appointment they took 7 vials of blood for a battery of tests, one of which was for a gene mutation and collection of symptoms that are known as Rett Syndrome (RTT). Nora’s test for RTT came back positive so she definitely has Rett Syndrome and not autism, cerebral palsy or any of the other disorders that matched her symptoms.

RTT almost exclusively affects girls. A child with RTT is usually born healthy and shows mostly normal development until 6-18 months, where skills and development begin to slow. After this, the child may regress and lose communication or motor skills. They may have disorganized breathing patterns, seizures and will have abnormal hand movement (hand washing/wringing, tapping, patting). Over time, motor problems may increase but communication and interaction may improve.

It’s impossible to predict the severity of Nora’s symptoms but she will probably require special care and attention indefinitely. She will suffer from some level of Apraxia (inability to perform consistent motor movements) which can make it difficult for her to move, make eye contact, and speak. Here are the stages of RTT (not all girls move through all stages):
1. Stage I: Early Onset Stage (6-8 months)
2. Stage II: Rapid Destructive Stage (1-4 yrs)
3. Stage III: Plateau Stage (preschool to adulthood)
4. Stage IV: Late Motor Deterioration (from time ambulation is lost on...)

It is impossible to gauge the intelligence of RTT children because intelligence tests all require the use of hands, communication or other normal skills. However, it is clear that RTT kids experience the full range of emotions. Unlike some autistic children, they prefer people to objects and enjoy family and friends, even if they can’t interact normally. Some girls with RTT can communicate [somewhat] normally. Others can learn to communicate using computers, etc.

Life expectancy in RTT is not entirely known. RTT is rare, newly recognized as a disease (relatively) and is hard to retroactively diagnose in older patients due to missing or incomplete medical records. Girls with RTT have a 95% chance of survival into their twenties (compared to 98% in all females). Between ages of 25 and 40 the survival rate drops to ~70% compared to 97% in normal females. These are mostly predictions based on a fairly small group of identified cases. Only ~5% of RTT cases have resulted in death. 95% of those diagnosed are still living.

RTT appears to be a sporadic mutation and is [apparently?] not hereditary. The chances of another one having RTT is much less than 1%.

There is a variety of information on the internet and [GASP!] not all of it is accurate. The best information can be found here:
http://www.rettsyndrome.org/

Obviously, this was not the diagnosis that we were hoping for. However, we have been prepared to face the facts that Nora is significantly disabled and we took steps a long time ago to start seeking additional help for her. While finding out that your child has RTT is shocking and sad, it is nice to have a diagnosis. We now have direction and can focus on the care that will help Nora the most. Despite the physical and communication barriers she already faces, Nora has developed a sweet and silly personality. We’ll be there to help her overcome what she can and she enjoys lots of love from her family and friends.

July 29, 2009

Happy 2 Years, Nora!

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Our little girl is already two years old. It's so hard to believe. It really does feel like we brought her home just yesterday. Such a cliche thing to say, but so true.

Parenthood really is such a bittersweet thing. Mostly sweet, but I'm always wanting my kids to stop growing up so fast... sort of, not really... there's that bittersweet thing I was talking about. :)

July 17, 2009

Canon Rebel XSi

Those of you that pay attention to my twitter or facebook will know that I haven't shut up about the DSLR that I ordered roughly a week ago for the last week. I have always wanted to try my hand at digital photography with a piece of equipment that has enough flexibility to capture the vision in my mind. If you know me you'll know that I'm a little bit artist and a lotta bit geek. Photography allows me to enjoy the artistic composition and visualization of a shot while satisfying my geek side with a shiny piece of electronics that has a ton of tweakable settings.

Kristy also really enjoys photography so the Canon Rebel XSi (a very popular DSLR amongst amatures) is our birthday present to each other.

The box came in right before I got home from work today so I quickly set it up before we went to mom and dad's for supper. There is so much subject matter there, I could shoot for hours. For one, the sun was coming in strongly as it set, which always offers the opportunity for "moody" shots like the one at the top of this post. Their house itself is interesting and it just seemed like every time I turned around there were things to shoot.

I recently set up a gallery site to make it easier for us to share photos. I have posted some of my better shots at a gallery I installed on one of my web servers. You can quickly page through thumbnails or medium images. If you click on a medium size image you will get the full version. I resize them down a little for the web but there is still plenty of detail.

July 14, 2009

Camping and Visit to Children's

Camping Fun!

Over the 4th of July weekend we made plans to go camping with some good friends up in the Snowy's. We had a great time and wished it wasn't such a short trip... well, mostly.


Some of us slept... others didn't sleep so much.

Some of us went on a bear hunt and then ran away from the bears.

Some of us played in the sun... and got left in the rain for a few seconds, but no longer, I swear.
Others hung out in the back of the van... The only spot some of us won't eat rocks and pine needles.

All of us hung around the campfire and ate hot dogs, sweet corn, peas, watermelon, roasted marshmallows, s'mores and sang/listened to campfire songs...

some while sitting in new campchairs 'cause their dad sat in their pink Dora chair and broke it. No names.
The Johnson family clan.
The Mountain Man himself. A great camp fire cook!
Mountain Mama and Miss Braids exchanging flowers and sweet looks.

The Trip to Children's in Denver (Aurora)

This was our waiting room. At first I thought it was just ours until more people walked in. I wondered why they had separate waiting rooms and figured they must use the rooms sometimes for other purposes than waiting.
Nora having her milk... she was just waking up from her nap since she woke up at 5am. I'm so glad she took a nap. She was in a good mood the rest of the day.
Coen in the waiting room. Big, big eyes!
We waited more in the hallway after our initial meeting with 4 or 5 doctors...maybe six?
Coen fell asleep nursing so I put him in the Caddie. It's the name we gave our giant, wonderful stroller.
After all the doctors saw Nora and talked with us we got sent over to the main building for some blood tests and urine sample. Poor girl had, like, 7 vials of blood taken, granted they weren't all filled up, but I sure thought it was a great deal of blood taken from someone so small. Before that we tried to get a urine sample from her by taking off her diaper while she stood up which usually works when we are about to give her a bath. Of course it didn't work this time so poor Nora had to be bagged. The bag stuck out of her diaper so we could see when she went. So, we went to eat while we waited for her to go. In the main lobby it is all wide open (let me just tell you right now that this place is absolutely amazing. The tile, the walls, the art work on the walls, everything amazing). Anyway, this is looking up in the main lobby.
This is on our way over to the main building which is behind Hubby here.
After the whole ordeal we walked around for a few minutes longer. Here was a really cool ball coaster that just keeps going and going. It was pretty cool.
On our way out these bunnies caught my eye (cute). I just loved all the artwork they had everywhere.
Strapped in and ready to go home. You can see Nora's mosquito bites all over her face from camping. I felt kinda dumb explaining that one to the doctors. Perfect timing, right?

So, long story short is that Nora needs to have a bunch of medical tests done now because they couldn't diagnose her with anything yet. So, we begin the journey of figuring Nora out. It may take us/them a while, but it was nice to get the journey started. Now I will try to get some video posted.

July 2, 2009

Nora is Cool!

Nora is still really good at being cool. Just a little update. In case you didn't know.

June 1, 2009

Nora Stands!! And Other News

'So what has been happening with the Johnson clan?', you ask. I now present you with the merry month of May:
Nora can multi-task: not only can she stand, but she can look cool while doing it. We're all pretty proud of her. Wahoo, go Miss Badora!


We started off May with a family reunion and had pictures taken... by the end we were all ready to be done (with the pictures not the reunion). I didn't get the whole family on my camera, but I got this one of all the great-grandkids with the great-grandparents. And I think that's Papa claping in the corner.
Papa with Hadders and Coco Puff.
My Mother's day gift I made for Momer-na: A garden apron.


And then it was Hadders' birthday bash on the 16th!!Lots of cool presents....
Yummy cake....(yes that is cake in her ear)
and a nice nap with Papa.

During this party someone else was having a birthday:
Welcome Baby "D"!!!How precious...I'm kinda bumbed that this is the only picture we have.
Then I balanced an egg.

Then Miss Badora ate a snack and watched Mommy plant some Irises and Violets in the new planter that Daddy built.
All the while Coco-Puff just slept away. Those were some beautiful days!
We enjoyed one of those beautiful evenings with a trip to the new-ish park with lots of fun rides, including this spinning plunger thingy. I think J^2 and I had just as much fun as Miss Badora.
And we finished with a stroll around the "lake".
It got a little bit cooler and Coco Puff watched Daddy move some dirt around.Hello cute little froggy. Isn't it cold out here?









Coco Puff got a bath... which happens about once a month these days. Poor guy.

That pretty much sums it up for the month. There are a few things missing, like some weddings and anniversaries and work day at Chugwater and...okay May was a busy month. I just couldn't get it all in here.

And Now...


Yes! You can see it with your own eyes, now. Miss Badora is a stander. Yay! Horay! And, I know, to some of you this is old news, but if you haven't seen it you can see it now.
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