Berlin is home

She kept a positive and brave attitude even though she wanted to be home playing with her toys Christmas night and even though she had to get an IV after being told mistakingly earlier that she wouldn't have to get any shots if she went to the hospital. Fortunately she doesn't have to have surgery. She has to wear a back brace for 2 months and has to be extremely cautious as to not fall, trip, or slip which for a four year old is going to be a challenge. Even though she is frustrated and doesn't want to wear the brace she is happy to be home with her family, cats, and toys. She wants to share with everyone that she was very brave when she got what she calls a blood test(IV).

I want to personally thank everyone for their prayers and well wished. It really does make a huge difference.

Prayer request for an Angel

Sweet little Berlin broke 8 vertebrae and 1 rib Christmas night. This is very scary because her T8 vertebrae is missing 80% of its mass due to the last fracture. It's not known yet if she will need surgery but, please get out your praying pads because she needs as much help as she can get. We all do. She is such a trooper. While the medics were getting her ready to be moved, she was telling them about her favorite color and princesses. When Kat and I got there, I asked her how she was doing and she gave me a thumbs up.

It's sad and yet a testimony to the human spirit that a 4 year old has had enough experience with getting hurt that she can deal with it like an adult.

Buffy is a little Christmas Theif

Little miss Buffy searched out and stole her Christmas gift. When I finally got it back, I hid it in the pocket of my recliner. It was completely hidden so I went to the restroom. Guess who walked in with her gift? She found it by smell. Needless to say, it's now hidden somewhere that unless she grows thumbs, she isn't going to get it.

How much can the human heart take?

Sometimes I wonder how much the human heart can take before breaking, thus causing loss of one's self. What do you do when you reach that point? You can only repress so much sadness and hurt before the spillways open to relieve pressure. The question is, can the spillways be closed again?

I think everyone is aware of my mom's health and now, because there is no one to help out with the mortgage that she shouldn't even be responsible for, the house we all grew up in is in foreclosure and she is very likely going to be put on the street. With her medical problems and inability to even get out of bed by herself, I'm honestly not sure she would survive loosing her house.

I'm just not sure how much more I can take. I try to keep busy and repress as much as possible but, it's just getting too hard. There just doesn't seem to be light at the end of the tunnel.

Just wanted to get some thoughts out on paper as it were.

In loving memory of Friggidy Frog

After two weeks MIA, Friggidy Frog was found dead outside my Garage door directly to the left of the door threshold. He looked very peacefull. He tried to come home but something happened and he died. I suspect bug spray. I'm not sure what the life span of that type of frog is. It may have been natural causses.

It was a traumatic and emotional two weeks. Buffy was at a loss when Friggidy didn't show up at 6PM to play with her through the arcadia door. After the first week, Buffy stopped waiting by the door but, would periodically check throughout the night.

Friggidy will remain in our hearts always. Whenever we are out back, we will think of Friggidy frolicking in the Dichondra.

My Neighbor

A little frog that Kat named Friggidy made a home in my Dichondra Garden.

Walking with Dinosaurs

Kat and I went to the Walking With Dinosaurs show and it was fantastic. The pictures didn't really come out great as I took them with my camera phone but, they will give you an idea. The dinosaurs were life size.

http://www.dinosaurlive.com/

Kat and I went to the Narnia Exhibit

Saturday, Kat and I went to the Narnia Exhibit at the Arizona Science Center. It was pretty cool. We took turns sitting in the Ice Queen's thrown. It was very cold. After the exhibit, we tried out the wheelchair race. Probably no point in mentioning that I won. I clocked in at 7 mph. Would have been faster if I didn't have to use their old beaten up wheelchair. Kat made a valiant effort but, just couldn't keep up.

Life and God can be cruel

Things have been going very well between Kat and I and as a result, we have had been talking about family and our future. Because she was at risk for Huntington's disease, and it's a fatal disease with a 50/50 chance of spreading to her offspring, we submitted her blood for testing before we went on vacation to Jeff's wedding in June. She wanted the results before we left but, I was confident that the result would be negative and that God wouldn't screw me after all my family and I have been through in life. After all, I finally found real happiness in life and someone that loves me for me...why would God take that away. The Monday after we got back, we went in for the results and my life changed. She tested positive for Huntington's disease. I felt like I got hit by a car. I couldn't believe it. The person I loved and that truly loved me was sentenced to a horrible death. God is going to take her from me. I looked at Kat and I knew that she was prepared for this answer. She had been preparing all her life. I had only 4 or 5 months but, I wasn't prepared at all. I was so absolutely positive that she wouldn't have the disease that I didn't prepare myself. The prognosis is an estimated onset of symptoms in 10 to 20 years but, it could come earlier or later. Generally onset is between 30 and 50. There is a study medication that she is going to start that may or may not delay the onset of the symptoms i.e. prolonging the time she has for a normal life but, there is no cure. It will take her at some point but, if that's when she is in her 80's or 90's instead of 30's or 40's, we'll take it.

One of the major issues that we have been working through is the impact on having kids. I have worked all my life to be able to have and provide for a family and can't see myself spending the rest of my life without kids. The saddest part of all of this is that Kat wasn't even considering having kids until she met me. Now she can't see her life without them and she's having a real hard time dealing with the possibility of not being able to give me kids for fear of sentencing them to death. Her Dad died from HD and Kat saw what it did to him and their family and can't sentence her kids to that type of life.

We love each other and aren't prepared to give that up without examining all possibilities so, we are continuing are relationship as if we never heard the test results, at least until we get all the facts and have exhausted all resources. Then I face a very hard decision. There are three possible options with regard to have kids.

1. Adoption but, it can be expensive and very difficult to adopt an infant.
2. In Vitro Fertilization with genetic testing. Cost is about $20K per try and there is a small percentage that the child would develop some other abnormality such as Downs Syndrome due to the genetic testing procedure. Lots more research is needed regarding this procedure.
3. In Utero testing. Normal baby making process(fun way). This procedure is much less expensive and can be done when the fetus is 10-12 weeks old. The ethical choice is a tough one though. If it has HD, then do we abort???????
   

December 26th is our one year anniversary and I feel so conflicted.

We have a very hard and painful road a head but, with all our family and loved one's, I'm sure we'll make it....well at least we'll try. I'm not sure about much of anything anymore.

What is Huntington's Disease?

Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. If a child does not inherit the HD gene, he or she will not develop the disease and cannot pass it to subsequent generations. A person who inherits the HD gene will sooner or later develop the disease. Whether one child inherits the gene has no bearing on whether others will or will not inherit the gene. Some early symptoms of HD are mood swings, depression, irritability or trouble driving, learning new things, remembering a fact, or making a decision. As the disease progresses, concentration on intellectual tasks becomes increasingly difficult and the patient may have difficulty feeding himself or herself and swallowing. The rate of disease progression and the age of onset vary from person to person.

http://www.hdsa.org/about/our-mission/what-is-hd.html

Jonny 5's Gear Box after 1 Year of Buffy and Kat hair

On my way into town

Pictures from Idaho and Jeff's wedding

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Vacation, A Wedding, A boat, A Cabin O My

Kat, Buffy, and I will be heading to Idaho for 2 weeks. We are leaving on the 17th of June and will be back July 2nd.

Items on our to do list are as follows:

- Go to Jeff's wedding. I'm the best man :o)
- Go to the Water Fall
- Go to the Cabin for 3 Days
- Go to Red Fish Lake where I once again get to drive a boat :o)
- Just have a relaxing good time with my friends and family
- Break in a hotel room (Not the illegal kind wink wink)

Whippy the wonder lizard

Thanks to the tireless efforts of the Davidson's and Cindy and a bottle of Conola Oil, Whippy is alive and returned to the wild.

Whippy is a Whiptail lizard that got stuck trying to get out of one of the holes in the "Fill in the blank". Can't remember the name.

Hearts of Gold

Pics from Hearts of Gold 2008

Buffy and Angel at it again

Renaissance Faire

Went to the Renaissance Faire today with Kat and Buffy. Both Kat and Buffy did really well. No disobedient behavior from either one.

In memory of Butterscotches

Horny Plant

Family Law Anyone

If anyone knows of a good family law lawyer that will work Probono, please let me know. It's very important but out of respect for my family, I'm not going into any details here.

My Walkway and Me

My Walkway is finally finished and I love it. I love being able to cruise from the front to the back without going through the house.

Johny 5 is alive

I love my little robo vacuum. He picks up absolutely every scrap of dirt. He does such a good job, it looks like my floors have just been mopped. I have him scheduled to clean every other day. No more vacuuming or sweeping for me. With 2150 sqft of ceramic tile, it was starting to get monotonous. The programming that went into him is very impressive. The algorithms that they use are phenomenal. He eventually hits every square foot of the room he's in.

When it rains it pours

It all started when I drove into work the 9th. A coworker asked if I wanted to go the gun club and shoot a machine gun for his birthday. Naturally, I couldn't resist so I got my firearm and we headed to the club. After shooting my Glock for 100 rounds, I moved to a full auto uzi It doesn't have allot of recoil at first but with rapid succession, the energy builds and the uzi kicks up. With the first clip, I blew chunks of the range ceiling off because my wheelchair started to roll backwards. After the first clip, I used a death grip on the forend of the gun to hold it down. It worked quite well and I had no problems controlling the gun. Immediately afterward, I noticed major pain in my right had between my thumb and forefinger. I thought it was just inflammation from my death grip but, turns out it's much worse. I have almost no use of my hand. If the recent xray doesn't show anything, they are going to setup an MRI to look at the ligaments and tendons. My next follow-up is Friday.

So, Approximately one week later, I was up very early around 7AM and decided I would move one of my computer power supplies. In doing so, I dropped it on my left big toe and broke it clean through. It's pretty nasty. The break starts at the bottom right of my toe nail and traverses diagonal to the top left of the first knuckle from the top. Moral of the story: Don't move anything heavy while naked or at least if your naked, wear steal toed boots.

Misc. Pics for your viewing pleasure

All of these photos were taken with my 35mm Nikon FM3A using Kodak Professional 160VC film. No digital for me.