Latest Update from Dr. Haskins....

Good morning Dave,

I am very sorry that you (and I) were not kept in the loop about results so far on Koda.  I had assumed, since I was in Spain and now am in France, that the folks in the lab would have contacted you.  When I wrote to Dr. Giger, who is now also traveling, he responded that "We really do not have any major findings (yet) and the MPS spot test is much less positive (age related)."  Thus, at least from my distant vantage point, it appears the most interesting early finding, the very positive MPS spot test, may have been leading us astray.  The next step has been to send the sample to Germany for analysis to determine what the individual glycosaminoglycans are in the urine, which may lead us to possible enzyme tests or help confirm the positive spot test as a blind alley.  

As you know, the lack of typical clinical findings have diminished the probability of MPS, and with the MRI findings, which are also not typical for MPS, we are still at a loss to providing a definitive diagnosis.

Decipher this :)

Yesterday Koda went in to give his new samples for the U-Penn team.  They should receive them today.  They will be doing more in depth testing as well as some DNA.  Hopefully they have received the MRI by now and have started examining that as well.
Dr. Blackmer did another thorough examination of him yesterday and said other than being on the small side for a 6 month old Siberian he looked GREAT!
Hopefully we'll have some news in 5-7 days.  Send mega positive thoughts please!!!!

Happy Birthday to dear, sweet Koda.  He turns 6 months old today!!  One milestone under our belt. Woot!!

More samples being sent to U-Penn on Monday for our boy.  Here's hoping for a more detailed diagnosis and prognosis.  They are looking forward to viewing the MRI (should be there tomorrow) and giving us some feedback on that as well.
I just love this little guy....You would too if you met him :)

Check out Koda's vest!!

Koda will be stylin and profilin in his vest for the MPS walk next month.  Who's coming out to join us to raise money for a cure for this deadly disease in children and dogs??

I think it's time to get child proof  locks for the house.  It's frustrating and funny at the same time having to watch everything that Koda does.  We don't have small children in the house anymore so we aren't always "on guard".  Like when we open the oven door to check on dinner and he tries to stick his whole head in there. We're constantly pulling things out of his mouth because he doesn't have the best chewing skills and stuff gets stuck in there and he goes into these mini chewing frenzies.  It's hard to explain unless you can see it.  The other day he learned how to open the dog food container and being as clumsy and uncoordinated as he is, he got half of his body in there and was chomping away.
Yesterday, he opened up my jewelry armoire and was taking out everything in the drawer.  I really should have a mini camera on me at all times to catch this naughty boy in action!!

On a positive note, Koda has not pooped in the house in TWO days!!  Woot Woot.  He poops on the patio right outside the back door now.  His new favorite thing to do is play with the power washer every evening while daddy is cleaning his messes.

It's the little things...

Koda's photo gallery

We may be doing more testing on Koda through U-Penn.  Stay tuned!!!  Dave had a long talk with one of the MPS researchers up there and he is discussing next steps and will get back with us.....

Koda gets VERY excited when it's feeding time.  He's very animated and typically doesn't get this distracted from his ring around the table routine.  He makes us laugh every day!  How can you not love this little guy?

Koda at dinner time :)

koda

Oct. 3, 2013

Dave and I signed up for the MPS run/walk and plan on taking Koda out as the canine spokesdog for this event.  As devastating as this disease is for us and Koda it is 100 times more so for children and their families.  We have to help find treatment and a cure for this.  Please join us in our efforts by signing up for the walk or donating in honor of Koda to this wonderful cause....
Here is the link:
http://mpsrunnc.com/

Oct. 2, 2013

I've noticed that Koda is much like a child.   When there is a lot going on and people are coming and going in the house he gets very excited.  He runs in bigger and longer circles.  He runs from person to person and tries to "taste" them and the bites get harder and harder the more excited he gets.  Then I have to corral him and hug him close until he calms down....Reminds me alot of an over tired toddler :)

This is new......Koda was FLYING around the back yard.  First time I've seen this!!!

September 23, 2013

Have I mentioned that Koda is severely "touched" so that housebreaking is not an option?  Have I mentioned that diarrhea is a symptom of storage disease?  And Lastly, have I mentioned that I spent 45 minutes BEFORE leaving for work at 7:00 am cleaning up his messes? sigh 

September 4, 2013

Dave and I contemplated next steps for Koda after his visit to Carolina Veterinary.  We decided we wanted to know for sure if what he had was indeed storage disease and which one it was.  So, we took him in for specimens to be sent off to U-Penn who is top in the nation for canine storage disease studies. 7-10 business days for results.  Talk about sitting on pins and needles, waiting and waiting.   Finally we hear back...Results attached.   The bottom line is, storage disease, even though he doesn't have the typical clinical signs, progressive, and no treatment available.  How long?  We don't know.  How quickly does it progress?  We don't know.  Could it have plateaued and he possibly won't get any worse?  We don't know.  Nobody knows anything.  Nobody wants to do anything more yet they have no cure or treatment plan...Frustrating and disappointing. 

August 20, 2013

Today Dave and Koda take a road trip to Carolina Veterinary in Greensboro to spend the day with canine neurologist, Dr Miles. We are anxious and hopeful for a positive outcome.  We've had alot of heartache in the rescue and with our personal dogs.  We felt like it was time for some good news.  Unfortunately, it was not to be.  The Cerebral Spinal Tap was clear.  The MRI showed major brain deformation indicative of storage disease.  Dr. Miles explained it simply.  We will be living with a severely retarded dog that will never get better and symptoms will progress until he will have seizures, loss of motor skills, and will be unable to eat or drink.  We were heartbroken.  The visit was beyond expensive.  We threw up a last minute facebook auction to help with the bills and our supporters were awesome!  We were able to pay for his visit and also pay for 3 other dogs that had unexpected medical expenses.  Dave and I made the decision to keep Koda with us in our home for as long as his quality of life was worth fighting for.  This blog is to help us remember all the cute, quirky, new, funny things he does every day.  We love and adore him and hope you follow along on our journey.

http://www.ivis.org/advances/vite/braund18/ivis.pdf

August 8, 2013

Koda spends the day at Petsound Animal Hospital.  Koda walks in circles and appears to be blind and deaf.  Thorough exam and bloodwork all prove normal.  Dr. Monce suggests we wait and watch for a week or so to see if his behavior is due to his sight limitations.  He is so sweet, loving, and clueless, lol.  I watch him constantly looking for signs of anything, good or bad.   On 8/20/13 we scheduled an appointment with Dr. English with Animal Eye Care to get  a diagnosis on his vision.  After their exam it was concluded that Koda could see fine.  Nothing wrong with his vision at all.  They thought  neurologic issues and suggested we have a neurolgy work up. Not exactly the news we wanted to hear but eager to get a diagnosis we will move hesitantly, fearfully, forward..

August 6, 2013

The story unravels this way:  A man bought Koda from a breeder in Newton Grove, N.C.  Koda is only 6 weeks old.  Too young to be separated from his litter IMHO.  Apparently Koda has a seizure shortly after that and the man contacts the breeder wanting his money back.  The breeder states that she never heard back from him.  In comes a 17 year old unsuspecting girl.  She buys Koda from the original adopter. At this time Koda is 12 weeks old.  The next day she notices that he just isn't acting right so she takes him to Brawley Animal Hospital in Mooresville, NC.  Dr. Shivers notices some scars on his neck and some distinct neurological behaviors.  Unfortunately the young girl has no money for further testing and opts to have Koda euthanized. :(  Dr. Shivers had her sign Koda over to the hospital so that a rescue could be contacted and further medical testing could be done.  After speaking with Dr. Shivers and with alot of help from fellow rescurers, Koda arrived at Pawfect Match Rescue and Rehabilitation.

On August 2nd, 2013 the day all of us pet owners dread came once again to the Walters abode.  Our Siberian of 16 years let us know it was time for her to move on.  Kiko (pictured below) was an awesome dog and our first certified therapy dog.  She lived life with vigor until she was 15 years strong.  While Dave and I were crying over wine and lunch after saying goodbye we received an email from a fellow rescuer.  "12 week old Siberian with possible neurological issues needs rescue"  Was this a sign for us?  Or was it a moment of weakness?  Either, or....the story of Koda begins...