Camellia's AVM

Just wanted to post a link to a website for Camellia!

Camellia is a beautiful little girl with a facial AVM. Her story has many similarities to mine as a child. However, it sounds like she is having a rougher time than I did at that age. But luckily, she is already being treated by Dr. Yakes and although this treatment is hard for such a little girl, I hope that it means Camellia will grow up healthy, happy, and AVM free!!!

Camellia's mom keeps an online journal detailing their journey and treatments. Please visit her site and sign her guestbook!!!

http://www.caringbridge.org/visit/camelliaschaner

Keith's pictures are up!!!

Timeline pics for Keith are up on my website. Here is a quick preview...

If you have forgotten his story, check it out in my earlier blog post titled "Another Facial AVM" dated 8/5.

Angiogram screen shots

I updated my picture link with new screen shots of the Angiograms for each of my AVM treatment's through July.

Totally weird and it looks like the metal coils are just "floating" in my face. But really that is the big "tangle of spaghetti noodles" that is the AVM and the coils are all smushed into them!

June's treatment is like inverted with the dark/light stuff. Kinda fun compared to the others...

I actually have the entire series of pictures which shows the dye going into the vessels and progressing through. But I'm not exactly sure how to get that into a "movie" that you can see. Anyone with technical expertise that wants to help me??? I only pretend to know what I'm doing. ;)

And a bunch of the coils are made of platinum...maybe when this is all done I can melt it down and make a keepsake bracelet!!! Would that be weird?

Shalon

Fries on the brain...

Totally off topic...

Josh & I did a day trip to SJ yesterday for Morgan's first birthday party. It was nice to see our Hubbards since it has been like 10 months! Yikes!

Anyways, it became apparent only a few miles down the road, that my husband was craving fries... Seriously you should all know that EVERY song on the radio can have it's lyrics adjusted to somehow include a line aboout "with fries." And even better...curly fries!!!

It got so bad even I was chiming in with the fry lyrics... And yes, we do realize we are total dorks!

I challenge you all to try it next time you are in the car and can sing to yourself... it's a full proof theory, promise!

Cyndi's timeline

Ok- I updated the picture page on my website with a timeline for Cyndi starting at 28 until this weeks embo! Her blog is also up and running if you want to find out more info about Cyndi's story, check it out here.

Now I just need to get confirmation from Keith on his.

And eventually my AVM-sisters, Steph & Andrea will get me some pics also!!!

Updated pics!

So Cyndi sent over the pictures she took of us from this week! I have to say again that she makes me feel like a wimp...but oh well, we all have varying degrees of this AVM and all face different challenges.

Here is a just one pic, but to see all the them, check out the slideshow on my website.

I'm also going to be adding some additional photos of Cyndi, and some of Keith once I get them all put together in a timeline slideshow!

Hope you all are enjoying my unlimited AVM posts!!!

Shalon

Back from Denver...and I'm a snob!

We just got back from my 7th trip to denver for treatment. Everything went well and I'm feeling great. We got to meet Cyndi (another Yakes patient I've been emailing with) and Eric the new PA.

And although many of you have never doubted my "snob" status, it is now official! I can no longer deny it with the proof written clearly on my Denver Trip Log 7. You will have to read it if you want the proof!

I'm glad to be home and in my own bed. But I wanted to say a BIG THANKS to Jenn & Allen Astwood. Jenn for being soooo generous with her offer for Josh and I to stay at her vacant Denver condo when I am in town for treatments, and Allen for taking the time to meet us at the condo, give us a quick tour, and hand over the key! You two were lifesavers this trip (as evidenced by my snob story!)

I've also updated my "Timeline Pics" on my site. I'll also be adding some pictures of my angios & MRI's, Keith, and Cyndi in the near future- so check back to my pictures page...although I'll post up here when they are ready also!

7th treatment down...who knows how many to go!