When it rains, it pours...

One of the things that I love to think about is all of the great, funky medical bits I'm exposed to with my children. The latest is a diagnosis of torticollis with my daughter, Gwenn. Here is what a website has to say about torticollis:

What is torticollis?
Torticollis is a twisted and tilted neck. When your
child has torticollis, he cannot move his neck very much, and holds his head to
one side. His chin might point up a little bit. Torticollis can appear
temporarily and go away again, but it can also be present at birth
(congenital).
There are several different types of torticollis:

Temporary torticollis (selecting only the one that Miss G has...)
For most children, torticollis goes away after a day or two. All your child
may need is some rest, and perhaps a towel wrapped around his neck to keep him
still. This temporary problem sometimes happens when your child’s lymph
nodes are hot and swollen (inflamed) after he has had an ear infection or a
cold. Torticollis can also develop if your child hurts his head or neck
and the joints between the bones in the neck swell and become sore.

Gwenn is now sporting a very styling cervical collar, worn backwards because she is so little that even the small one from the office was too big for her. Lucky girl! I'll try to get a picture with the collar tonight!

Mypods and Boomsticks

You know, I love the Simpsons. After the most recent episode, I love them even more. Not sure what my favorite part is except potentially about Steve investing all his money in Microsoft stock... Enjoy!

Thanksgiving

Election season is over. My candidate was elected, and it's back to the daily grind of work, doctor appointments, school meetings, house keeping and other super exciting things like that . Not that I'm complaining. It's easier to focus on these things knowing that I'll have someone in the White House for the next 4 years that will hopefully work to make the last eight years worth slogging through.

I'm especially looking forward to seeing what happens with health care changes. Granted, not much can be done right now when we are incurring a billion dollars a day in costs for a war that we should never have been involved in, and when we are spending trillions to bail out banks and mortgage companies with failed policies. But - once we have dealt with some of the unfinished business (can I call it dirty laundry?) - I look forward to seeing what will happen.

As a parent of a child with moderate to significant needs, a chill goes down my back when I think about where I would be if it were not for the outstanding medical coverage my employer offers. I don't have co-payments for medical visits, medication or specialists. Those three ER trips a few weeks back? No co-payment. The visit by the on-call doctor at 3am last month? No charge. I am so thankful, and aware of it at this Thanksgiving time, of what a blessing I have in my employment and medical benefits. And for all of the parents who have children with similar or more impacted children with needs, I will pray for them this thanksgiving - and be truly thankful for what I have.

Gwenn is now two months in with the PEG feeding tube, and will go in for surgery to remove it next month and have a mic-key button placed in it's place. That should make all of us happier. However, she is on her fourth round of antibiotics, and frankly I'm hoping that this ongoing infection is gone prior to the surgery - I don't want it delayed.

We have also made progress with the doctors, although not what I would like. We met with Dr. H, a geneticist who is helping us try to solve the mystery of Gwenn. Agreeing that there are far too many things going on for it not to have a common cause, they are going to help us. Initially they will look into metabolic, genetic and chromosomal deficiencies in hopes of finding something. I continue to go through a fairly complete list of 800+ genetic and metabolic disorders one by one in hopes of finding something, probably obscure, that sounds like what we deal with - and could allow us to finally identify the little demon we fight.

Thankfully Gwenn's sisters are amazingly patient with her. As she has recently changed medication, that patience has been called on. Ella is amazing, and has really stepped up. Lucy plugs along with everything, although I have to work hard to ensure that she does not try to emulate those habits of Gwenn's which we are trying to neutralize. She is such a little parrot, that while it helps with speech and motor skills, the social skills may be slipping a bit.

I've found that I have been lacking for time recently, and I'm hoping that I will get some back to spend doing some much needed game playing, cuddling and reading with the girls over the weekend. I'll also be in touch with some friends who have been in my thoughts recently.

To Lorna - you are an amazing woman. You deal with so much more than I could ever imagine, and never run out of patience or a sense of humor. You are my "patient mom" role model. Many of my friends know Lorna, and dealing with a child with a terminal illness (without a timeline) is a stressful piece of work - and yet Lorna not only maximizes every day, she still understands that despite a frightening diagnosis that there is so much life to live, and that doctors are often wrong. Know that we here in Seattle are constantly praying for all of you, and that Gwenn tells me that she too "hates mito"...

To my friend S - who I will leave anonymous for now. You are a pillar of strength. You are a fantastic parent, and will continue to be a fantstic parent as a single parent. I'm here when you need me.

So many others to be thankful for - D&H, Sandy & Jim, Sundie, Sharon, Libby, Karin, my mom and so many more. While I don't get time to think about it while I'm running myself ragged, I really do have it so good. Thanks for all you all do for support...

That's it from me for tonight. Remember on the eve of Thanksgiving during these turbulent times, that we need to focus on what we do have and the many blessing that we do have. One of my favorite songs that the Hopeful Gospel Quartet sings is the song "Count Your Blessings" - which goes something like this:

Count your blessings, name them one by one,

Count your blessings, see what God has done.

Count your blessings, name them one by one,

And it will suprise you what God has done....

Obama Rocks the White House

Tell me it isn't so!!!!!!!

Simply the most brilliant piece of viral marketing for pass-on that I have seen in years. I have so few other words - but I'm trying to send to everyone right now... get the message??? If you don't have it from me - don't worry - you will soon....

Waaaassssssup? Change …

The new....

and the old....

Busy

You know, there are times when it just gets so busy, that you can't think about doing much of anything. That is definately where I've been the last few weeks.

As a note regarding business, before we go anywhere else, I want to thank Cheryl again for the gift of the post-it organizer that she gave to me almost six months ago. I think without that, I would not see my desk for all the notes and thoughts that would be piled on it. Instead I have the coolest organizer (I'll add a pic later) that is indespensible... Thanks!

So. First off, there have been many changes around the house. I had planned on more updates quite frankly, but the economy has me freaked out (well - I think that is just about all of us in the country) so I'm not doing so much. But, some long-awaited items are now dealt with.

Frst, here are the pictures of the baseboards that are now installed. I have to say - after four years without baseboards - they look even better than I had imagined. The new doors still rock, but the baseboards make me feel so good! Dorky huh?

This is just a small piece - they are in all over upstairs now - and hopefully next spring I can replace the other doors in the house, and the baseboards downstairs as well. I dream about that day. (God, but it's the truth... instead of dreaming of foreign men, I dream about men with or without beer bellies who fix up my house and do handyman work...)

I have found a great handyman who works with another that I had already used (actually neither have beer bellies, but I guess that is just a bonus). The other big piece that they did is almost as exciting. If you have ever been in my garage you will know that it was an electrical mess. There was one outlet for everything, and frankly I had doubted if it was legal wiring. Well, G (the secret handyman whose identify I won't reveal for fear of having too much business and never seeing him again) was able to add 5 lights, and 7 electical sockets in the garage. I tell you, it was pretty cool. I now have my own electrical tester unit - and have now discovered most outlets in the house are not wired correctly. Note to self to install the new fire detectors this weekend. If something goes wrong it will be from the crappy electric work I paid for when I moved in. Here is the garage:

In addition, this week the last of the big projects was done - a new side fence with gate to replace the moldy oldy that was falling apart. Mom - these pictures are for you. Doesn't it look nice?

This past week I travelled to CO on business, and was able to meet up with my newest neice, Hayden. She is pretty damn cute, I have to say. Now the next order of business is to get my brother to marry the mother sometime here in the future, after we get him a better job with a future and a decent paycheck... I'm still watching out for you, bro... Here are those pics of Miss Hayden Peterson:

I travelled to MN early this month for my 20th college reunion. Really. It was great - I felt OLD (stunning) - and while classmates were talking about getting their kids ready for college, I was able to find one or two other classmates who I could talk about potty training with.

A special thanks goes out to Karen L. for finally returning my copy of "The Mind Parasites" which I purchased on a trip to the Soviet Union my junior year. She agreed that it was a good book, but didn't want to be one of those people who don't return books. Thanks so much, and I've already started to read it again.

At the reunion we were able to watch the football game (we lost - not much has changed in 20 years), drink heavily with friends (no photo evidence), and visit with the kids of friends. Here are some pics from the weekend:

Before more updates on Gwenn, I thought this picture would be great. This is Libby's son - Jordan. Now mind you - Libby and I have plotted on how we could get these two kids together when they are old enough that parents want their kids to get together. Well, it is a conversation that really does not have to happen. Gwenn is to Jordan like a moth is to flame. Thankfully, this flame is gentle and patient with Gwenn. Once she had her Jordan memory sparked, she was drawn to him and we definately needed more time with all the kids together. Once yearly trips are far too short. Maybe next summer we'll go to MN for two weeks instead of WY. Maybe not...

Gwenn has now gained 16 pounds since May. As you can see from the pictures, it's nice not to have her with the ng-tube on her face any more. The PEG tube that is in has been tough - she has had a few infections, has granulation tissue growing (trust me, it's gross), and a sore tummy. Plus this week, her PEG tube sprung a leak. Believe it or not, but the GI doc is having me fix the tube hole with Gorilla Tape (the tape version of Gorilla Glue).

Gwenn has also started riding at a theraputic riding stable. The big one around town has a 3+ year wait, so we found one that isn't so crazy. So far, it's been fantastic.

Last, we are all getting ready for Halloween. Lucy's friends, Kira and Kate, had their 3rd birthday last weekend and it was a Halloween theme to get us in to the mood. Here are some pictures from that...

This is just a small sampling of what is going on. We are making great progress on the teen tour to China next summer, where the teens from FCC-NW will spend 17 days volunteering throughout three different cities in China. We have many families considering, and it sounds like it's going to be fantastic.

Lucy got her hair cut for the first time... not much, since I'm trying to grow out the bangs, but enough to even her out. Very grown up. Then had to have a LONG talk to make sure she would not try to do this on her own. Not sure if she got it. We'll see...

Well, that is about it for now. I'm sure there will be more. Keep bugging me.. I have to go and break up the pouting match that is going on right now, as the girls destroy my living room (it was clean about 20 minutes ago)... good night.