Visit to Chapel Hill

We had a good visit with Jake in Chapel Hill this weekend. However, we did meet with the pediatric neurologist as planned and although he didn't have anything new to offer in terms of treatment he did stipulate that he didn't feel the baclofen pump was in any way interfering with or otherwise affecting his seizures. He also confirmed that we were probably at the end of trying all the anticonvulsants that would be available, which we also knew.

Basically, here are our options at this point:

1) Ketogenic diet - high protein, high fat diet that has shown to reduce seizures in some epilepsy patients. Click here to learn more.

2) VNS - vagus nerve stimulator: a device implanted in the neck that sends a mild electric shock to the vagus nerve. To learn more click here.

3) Epilepsy surgery - obviously, a very last resort and one that we are definitely opposed to at this time. This involves removal of the damaged brain tissue and carries a significant amount of risk.

The doctor advised us to proceed by going with the least invasive option first and moving up. So, we will probably look at the diet first. The difficultly with the diet is that you have to eliminate carbs and that's mostly what Jack eats. We will seek a referral from our doctor to a nutritionist and then go from there.

That's all for now.

Chapel Hill...finally

Sorry it's been way too long since the last entry but we did get a call today that there is an opening with the pediatric neurologist in Chapel Hill that we've been wanting to see. We had thought we weren't getting in until October so this is good. This particular doctor is familar with Jack's type of seizures AND the intrathecal baclofen pump so we're hoping that he can provide some guidance on our next steps.

We will be heading up this weekend and of course, will be visiting with Jake.

We will keep you updated.

Jack and Bella

We went to visit Kris last night for dinner and Jack got to meet Shannon's new kitty Bella. Jack enjoyed playing (and to some extent, torturing) Bella. But Bella took it all in stride and playfully chased everything Jack tossed around the room. Cute kitty Shannon!

More local coverage of Jack and CAYLIE

Here is another recently published article on Jack and CAYLIE.

Thanks to Candace for this coverage. Click here to read the article.

1st day of 1st Grade!

Yesterday was Jack's first day of school and he was so excited to be going back. We are very grateful for the new school hours this year as he doesn't get on the bus until 8:00 and doesn't get home until 3:30. We were getting him up at 6:00 last year so this is much easier. His new teacher is Mrs. Sosa and although Jack misses Mrs. Hall very much I think they will get along just great.

"Pay It Forward"

Please read this article published in The University City Weekly newspaper of Charlotte, NC entitled "Pay It Forward".

CAYLIE

We had quite a whirlwind weekend but enjoyed our time spent with CAYLIE and the paws4people crew. On Saturday, Terry, Kyria, Jeremy and of course, CAYLIE, all came to visit us and Jack and CAYLIE practiced walking with a new harness. CAYLIE, still acting very much like the puppy that she is (16 months), bounded around the house and backyard retrieving a ball she had picked out of Jack's toys. She was quite the bundle of energy.

We learned that graduation will probably be in the mid-November timeframe. As to exactly when we will receive CAYLIE permanently in our home is still to be determined. She still has a bit to mature and the training with her and Jack will be more gradual. Still, we're hoping for placement late this year if all goes well.

Maggie was not her usual feisty self as she was recovering from an allergic reaction to a rabies vaccination but was a little put off by CAYLIE's bounding around "her" backyard and snapped at her once. I think once they are together for a while, they will be the best of buddies.

On Sunday, Lisa had her fundraiser for paws4people at Candace and Paul's house. She did extrememly well, raising $300 for "paws". Thanks to all the friends and family that came for support and purchases of Lisa's handmade glass jewelry. CAYLIE and Jack were in attendance of course. CAYLIE was much more subdued on Sunday, probably due to the large number of people and activity. She was content with laying at Terry's feet and napping from time to time.

Enjoy the pictures.

Learning to use the new harness

Jack and CAYLIE will have to figure out how to coordinate each other's movements which will only come with practice.

Jack was practicing voice commands like 'down', 'leave it' and 'eat'

Getting a wet kiss

What a beautiful dog

CAYLIE, Jack, ADDIE and Terry

CAYLIE at the fundraiser

A surprise visit from Mrs. Hall