I think this must be about the 4^th time I have tried to do a journal update, so let’s see if I actually finish this time…

**Warning this will be long, may include language not intended for children & you may even need a tissue.** 

It has been a very long and busy month in a half since our last update.  Dealing with the new diagnosis has not been easy to say the least but we have been keeping so busy it has made it a little easier not to think about. 

When we received the Cerebral Palsy diagnosis it took me quite a bit of time to deal with the fact that I was going to have a child with special needs.  To tell you the truth I really didn’t know anything about CP, so I started researching and soon learned that it wasn’t as bad as I thought.  There were things you could do to help with the symptoms, new and different therapies that were working wonders and best of all he could still live a full and productive life.  Now, I would kill to have that CP diagnosis back!

These days we are having to deal with the reality that with Lesch Nyhan Syndrome it is going to get worse, he is going to have serious health issues in the future, there really isn’t anything we can do help it and he will be lucky to make it until his 30^th birthday.  Every time I think of this my heart breaks a little bit more and have to pause for a little break down or sometimes a big break down.  Ken of course seems to be dealing with it better than I, just one day at a time theory.  What is that they say, men’s brains are like filing cabinets they file something and move on and women’s are like spaghetti, one thing leads to another and everything is intertwined?  How did this happen?, this is a genetic mutation that is for the most part passed down through the mother’s side of the family with women being carriers but only males showing the traits.  Those of you that know me know I have a HUGE family, w/3 sisters and 2/brothers, w/9 kids between the 6 of us (8 of those being boys).  Not to mention so many first cousins I can’t even count them all with nothing like this affecting anyone.  How shitty exactly does my luck have to be??!!  They say 1out of 380,000 births have LNS, how many of those are spontaneous mutations and not carried down through families?   I always knew Konnor was 1 in a Million, I just didn’t know how.  We would have been odds winning the lottery, maybe I should start playing.  I have of course been doing a lot of research on LNS and have heard a lot of “there is really nothing that you can do, just make them more comfortable and help them deal with their symptoms”.  This really isn’t sitting well with me, there has to be something out there to help!!  Our trip to China for Stem Cell Therapy dramatically improved his speech (which one of the traits of LNS is lack of or poor speech) how is this possible, can they do more???  No one knows, it is too rare, the doctor’s in China hadn’t even heard of it before I contacted them.  We have now been back to the Neurologist and gotten to visit a Metabolic Specialist and a Kidney Specialist, with more blood and urine tests.  We are waiting for his DNA testing to come back and provide the exact mutation then I will get tested to see if I am the carrier and this is all my fault or if it is just the shitty luck I brought up earlier.  I have found that one of the doctor’s that discovered LNS, Dr. Nyhan is still in practice (at the age of 82!!, he is one dedicated Dr.!) I have already been in contact with him and we have an appointment for August 26^th.  So we are heading to San Diego, I have been doing more traveling to therapies and appointments so far then I ever had in my entire life.  Good thing I am getting over my fear of flying!! 

So enough with the venting/depressing crap, here is some of the FUN stuff we have been up to… (which has dragged me out of the house whether I wanted to or not)

June 28^th-29^th ~ Our Day Out With Thomas!  For those of you that don’t know Konnor is a Thomas fanatic! Thomas has officially surpassed Spongebob Squarepants on Konnor’s favorites list.  All of us (Aunt Donna, Hunter, Konnor, Mom & Dad) headed out to Hood River on Saturday afternoon, thanking God the entire way that our tickets to the event were not until Sunday morning at 9am.  It ended up getting to be 104 degrees that Saturday and the hotel pool was packed so we ended up going to the movie theater to see Wall E, which was Hunter’s first big movie experience, and we had to sit in the very front row where the handicap seats were.  I will let you use your imagination on how that all went…but it was better than sitting in a hot hotel room!!  We all survived the night and headed out at 7:30am to see Thomas, it was already about 80 at this time.  They had a lot of cool booths set up with different activities and of course a souvenir shop where we got even more Thomas stuff.  We ended up having enough time to hit most of these before it got too busy and just in time to get onto the train for our ride.  Konnor and Hunter loved the train ride which was about 30 minutes long with Thomas pulling us the last leg of the trip.  This would be the first on our list of “Birthday Fun Trips”…

July 4^th ~ Picnic at my parents w/all the family lots of food and fireworks of course.

July 5^th ~ KONNOR’S 4^TH BIRTHDAY!!  Aunt Donna invited us down to Oaks Park for a huge Longshoreman picnic, lots of more food of course and tons of rides.  Konnor’s favorite of course was the train ride which took you around the park, I think we must have gone on it about 4 or 5 times.  He also enjoyed the giant slide, the boat ride and the carousel.  Although he didn’t like the balloon ride I am not sure if it was the spinning or the going up in the air.  Daddy also won him a Spongebob poster and basketball, of course that is only because there wasn’t any Thomas items. J

July 6^th ~ Another BBQ, this time at our house with Grandparents, Aunts & Uncles.  More food, more presents & a very special Thomas ice cream cake.

He is still singing “Happy Birthday to Me” to himself, it is very cute and he can make it all the way through the song all by himself. 

July 9^th ~ First day back to Preschool.  He goes to a state run and funded Pre School for children with special needs, so the school years are all funky.  They have put him into a new classroom and he has a new teacher who is young, fun & cute, just how Konnor likes them. J   Plus he gets to ride the school bus.  This was also my Birthday, so we went to Gogo’s (the best place on earth, and they give you a free dinner on your birthday) with our friends Tanya & Guy.  That night we were relaxing at home with Konnor on the floor playing w/his Thomas trains when I saw him push himself up into a side sitting position!!  This is something he has tried to do and can usually make it about ½ way up but this time he used his hands to stabilize himself and stayed there for about 20 seconds all by himself!!  This was the best birthday present ever!!

July 12^th~ My Birthday “Date” Night.  Aunt Kathy & Aunt Connie along with the kids came over to watch Konnor so Daddy and I could actually go out on our own…  We went and got pedicures (which was Ken’s 1^st and no matter what he may tell you, he liked it!) and went to dinner.  Just as we were finishing up we got the call…Konnor was having an episode and we needed to come home, he wanted his daddy!  No movie for us but even thought we were home by 8, we still had a nice time.  His cousins Tayler and Danielle ended up staying the night and had fun playing with Konnor into the late night and most of the next day. 

You are officially caught up on everything now, make sure to check out the Photo’s part of the website so you can see pictures of everything we did. J    

So one of my goals for 2008 is to try to keep a journal and considering January is almost over I'm not off to a good start....

December seemed like it was over in a blink of an eye. Konnor had a great Christmas and really got into Santa this year. We of course left out milk and cookies, even some carrots for the reindeer. When he woke up and saw that the cookies were gone the next morning he couldn't stop talking about it all day.

We got Konnor a new walker, one that makes him work harder than the other one. He doesn't like it yet but hopefully he will start getting use to it.

Ken has been busy the last week or so doing a little remodeling project around the house. He took a wall that was between the family room and an office area. It is going to be Konnor's new Therapy Room!! It is going to help so much to have a room just for therapy.

As far as improvements go since China, he has been talking alot more that before we went. He is also stronger but is not pulling himself up as much as we were hoping. But studies have shown that most improvements happen 2-6 months post treatment. So we still have something to look forward to in the months to come.