Tuesday, January 31, 2012

Fardies Are Awesome

Many of you probably don't know this, but I am part of an ebay sellers group called Lilo's Fardville. It's a long story, but we have contests and sales each month, chat daily on one of the ebay community boards, and support each other through lots of challenges.

My dear Fardies decided that they would donate a portion of their January sales to Rachel's dog fund. I hadn't listed in a long time, but had to join in for this one, and actually did quite well.

Today I added up all of my sales, and the donations made to Rachel's dog account at Paypal, and we had made enough to make a donation to Paws of $190.00!:)

Every time I begin to get frustrated with how slowly this process seems to be moving, somebody comes along with a great new idea for raising funds, and I get excited all over again.

Thanks to everyone for helping us keep our chins up. We are so anxious for Rachel to have her dog, and I keep hoping for a magical letter from Paws, telling us that they've found funding, but I'm afraid it's going to be some time yet. 

(((Fardies))) I can't tell you how grateful I am to have you in our corner.


Wednesday, January 25, 2012

Thermometer Update

Just a quick update today, to acknowledge, and give thanks for, a few more donations we've received over the last several days.

We have a doggy cosmetic bag going to Australia, we've received another donation from Canada, and Brett sold the last jar of jam he had in his locker at work.

As a result of all these wonderful folks, we have increased the thermometer by another $165.00 today!

Thank you all so much. We really couldn't do this without your support and generosity.


Monday, January 23, 2012

17 Years

Yesterday was Rachel's birthday. She's now 17 years old! This is a scary place for us, as her parents. We know that it's a scary place for all parents, but for the parents of a child with a condition like epilepsy, it's particularly frightening.

Next year she'll be 18 (see how that 3rd grade math is helping me out?), and will graduate from high school. We have all sorts of legal issues to consider, and will have to depend on her to allow us to do certain things, like getting a power of attorney, so that we can continue to manage things for her, and make legal and health decisions, in the event that she's not able to.

We are hoping desperately that Rachel will get her dog this year, so that she can really begin bonding with it before she's out of high school, and wanting to be much more independent than she is now. 

Rach was allowed to go out to the movies with a couple of friends yesterday, without us along. There are a few reasons: 1. She was with people who knew what to do if she had a seizure, 2. The seizure risk was fairly low, as she had already had a couple of seizures on Friday and Saturday, and 3. The theater is about 3 blocks from our home.

This is how she looked when she left the house for the mall...

Oh, how I wish I had had the guts to go out in public like that at 17.lol

After the movie, we took all the girls out for sushi. Rachel had never had anything but California roll, so was very excited to try something new. As we were finishing our meal, she said how this was the best birthday ever. Success!

Since the seizures began, there have been several birthdays marred by either seizures or panic attacks. To have this one go so well, when she was allowed out with just girlfriends, and got to experience something completely new, was truly a wonderful gift, for all of us.:)


Saturday, January 21, 2012

Light Up Your Life, And Rachel's

This is the text of the note my dear friend Cindy posted on Facebook today. Please read it through, click the link to the photos, and contact her via Facebook, if you're interested in ordering the garlands:

Fabulous LIGHTED Garland
$30 each plus $10 for priority shipping by USPS
 100% of proceeds benefit "Raise the WOOF 4 Rachel" 
  • Multiple fabric strips hand-tied on a strand of 100 mini lights.  Extra bulbs included.
  •  Approx. length 20 ft. (contact me if you need to have a precise measurement).  
  • Can be strung end to end if you get multiple items.  
  •  Limited Quantity of Garland and Fabric Colors available at this price.  
  • Contact me if you are interested in a quote for a custom garland.
Link to Lighted Garland photo album & view fabric options currently ready to ship in limited qty.

Ideas for use are only limited by your imagination-
  • Lights are for indoor/outdoor use.  However, we don't suggest leaving outdoors in damp/wet weather. 
  • Looks fabulous if the lights are plugged in and on or left off.
  • Drape or swag it anywhere--across a patio beam, along a fence or stairway,  across the top of the wall, from your ceiling, over your fireplace, in the entryway, in a classroom, at your office, in your home, at a party, at wedding, in your back yard, at a BBQ, or ...
  • You can "install" it using suction cups to hang in large window, or 3m makes a removable hook you can use on the wall (neither are included).  Of course, "however you choose" is an option too!  :)  

♪♪ "You light up my life * You give me hope * 
To carry on * You light up my days * and fill my nights with song" ♫

That's what YOU can do for Rachel.  100% of the proceeds will be donated to "Raise the WOOF 4 Rachel"  A Seizure Response Dog can light up her life and give her hope to carry on--please consider purchasing an item or making a donation to help expedite the process of getting a custom-trained Seizure Response Dog for Rachel.

♫ "It can't be wrong * When it feels so right" ♪♪

LIGHT up your life and Rachel's!  Proceeds benefit "Raise the WOOF 4 Rachel"
Contact me through Facebook (not the Cobb family blog) if you have questions about the Lighted Garland or if you want to order one.  Thanks!  

I'm PAWSitive we can make a difference and help move Rachel towards her $30,000 goal and getting a Seizure Response Dog sooner rather than later!

Friday, January 20, 2012

All Good Things Must Come To An End

Once again, it's been too long since my last update, though I do feel like I have something of an excuse. It's a bad one, but still...

Things were going well.

Yup, that's it. December 16th was the last seizure Rachel had, until this morning. That's exactly 5 weeks. It's a wonderful break for her, and incredibly nerve-wracking for us. It's also the longest break she's had in a couple of years.

David Axelrod, former senior adviser to President Obama, has called epilepsy "terrorism of the brain". You never know when it's going to strike next, and you really can't plan for it. Planning for future events is optimism at its finest. You go ahead and make plans, and then hope that you don't have to cancel at the last minute, or leave early because a seizure takes place at an inconvenient time.

I've found there to be an interesting dynamic among the group of E-parents I'm a part of: We tend to share everything about our bad days, down to the most painful details, but when things are quiet, and going well, we hesitate. It's as if sharing about it out loud will somehow cause the fragile bubble to burst, and holding our breath will let it float along just a little bit longer. Meanwhile, we wait for that shoe to drop, and all hell to break loose again.

Rachel has experienced at least two partial seizures so far today, and there may be more later. On the upside, the odds are very good that the current seizure activity will not impact her 17th birthday celebration on Sunday. Now we'll be able to relax a little more, and maybe even allow her to go see a movie with friends, and not feel that we have to go along. 

I sure wish I knew what exactly it was that came together in perfect proportions to give Rach such a break. I'd bottle it up, and dole it out daily.

**ETA: After hitting 'post' on this entry, I checked the email, and found a lovely $100 donation from Canada! Thanks so much. The thermometer has been updated, and we're now over $8000! It's amazing to think how far we've come since we began at the end of July.:)


Tuesday, January 10, 2012

New Year, New Adventures

Time does fly, doesn't it? I can't believe it's been 9 days since I updated last. The New Year is a time of adjustment for us, as there are usually changes with insurance or pharmacies to manage, and that takes up my time for awhile.

This year, it's a change in pharmacy, and we had to leave the one we've been using for 20 years, which was hard for me, especially because of all the meds Rachel takes, and the relationship we've built up with the staff at the old one. In addition, I was at the end of a series of three cervical spine injections, which wipe me out for a couple of days.

We haven't had any Paws donations in the last week, but there is some good news: I have a great group of friends who sell on ebay, and they have come together to support us by committing to donate a percentage of sales from this month to Rachel's Paws account. This has also inspired me to clean out my own ebay space, and get some things listed.

In addition to all this, Rachel's 17th birthday is coming up in a couple of weeks, so we have that to plan for, and then she has an appt. on Feb 8th with the surgeon who implanted her VNS unit almost 6 years ago. The battery is wearing down, and we'll determine whether it's feasible to replace the entire unit, as the newer one has better functionality, and is easier to determine when it needs replacement.

So, as you can see, even when I'm not updating a lot, there is always something going on behind the scenes with us. If you ever wonder where we've been, or what's going on, just drop a comment on any entry, and I'll be sure and respond right away.


Sunday, January 1, 2012

Happy New Year!

Goodbye, 2011! Hello, 2012.

Last year was a big one for us. A lot of stuff happened, good and bad, but overall, I think the good won out. Rachel was finally accepted as a Paws client, we made a good decision about school for her, we got started on our fundraising for the dog, and found out just how loved Rachel is, and how much support is out there for us. 

Our biggest hope for 2012 is that Rachel get her dog before it's over. She's ready to really begin her independent life. Rachel's 17th birthday is near the end of January, and it would be wonderful for her to know that by her 18th birthday she could be working with her canine partner.

Rachel's Christmas gift from my California Mom was another donation toward her dog fund. We have now officially raised $7900! You might notice that I've made a change to our goal amount. As we've gone along with our fundraising, I've not included the $2500 grant from CHF, as they make their grant available as the last amount of money needed toward the dog. So, I've decided to alter our goal to reflect the amount we need before that grant is made. It sure makes what we've raised so far look a bit a better.;)

So, we wish you all a Happy New Year, and hope that it brings you blessings of love, laughter and happiness, and we thank you again for being there for us, and continuing to support us.