In Which She Rambles

This may be a rather stream of consciousness post, I'm not sure yet. Mainly, I just don't know where to start today.

Summer break has been good, but will be over with the first day of school, on Sept. 4th. In a way, I'm ready to get on with it, get it over with, and get this kid graduated. In another way, there is so much about to happen with her that it's sometimes overwhelming, and I just don't know what should be done first.

Rachel will be 18 in January, which means she'll be the one in charge of decisions having to do with school, and her education plans, etc. It also means that we'll have to prepare a medical power of attorney, just in case she's unable to make decisions for herself at some point, and we need to really consider the possibility of SSDI, though that can wait until she's out of school, and we get a better idea of whether she'll be able to maintain a job with her seizures and anxiety issues.

One of the problems we have is that Rachel's seizures seem to always be changing; frequency, type, manifestation, time of day, and so on. Always unpredictable. Just when things seem to be settling into a somewhat predictable rhythm, everything changes, and we're set off balance again.

Just this week, she's developed a new aura, where she feels like she's twisting to the side, and feels dizzy. Her right hand has also started to shake at the beginning of some seizures, which is completely new. Rachel has a left temporal focus, so right-sided movement is to be considered within the norm, but anything new makes me nervous.

Rach and I are in the habit of taking walks in the downtown park on a regular basis, and feeding the squirrels. The other day we decided to walk up the Derby track there, and we were making good time, and were almost at the top, when Rach stopped, saying it was hard to breathe. Usually I'm winded first, so I was surprised, and then I noticed she was blank in the eyes, so I got her steered over to the curb, and sat her down just before she began to cry, and the seizure was full-on. This was the first time I hadn't brought my entire purse (with meds, magnet, and at least tissues), so had nothing to wipe up drool with, and we both ended up looking as though we'd spilled water all over ourselves. Fortunately, she was able to walk again after about 10 minutes, so we came right home, and Rach had a long nap.

So far this month there have been 6 seizures, whereas last month there was 1. This in itself has become something of a pattern, but not one we can ever count on, of course. About the time we do, everything could change.

On the upside, we've received another $150 in donations! Every bit brings us that much closer to Rachel's dog, and I can't tell you how much having that help will mean to Rachel as she moves forward to adulthood, and independence. :)

-Kelly

Big Things

After my last update I got very busy picking berries, making jam, managing our household, and then we had visitors from out of the country. Brett's father and stepmother came down from Canada, and we had a few days where we spent every hour we could with them. It was lovely, and then they moved on to the coast, and the cottage they'd rented there.

The morning they left, we got them packed up, and then we drove down to my Mom's for her annual family BBQ. The next day, Monday, was quiet and lovely, but I had a bunch of chores to catch up on, and then Tuesday we all joined Brett's folks at the coast for the night. That brings us to Thursday, when a friend of Rachel's showed up on our porch unexpectedly, and hung out with her for a couple of hours, so we dragged him out with us to do our shopping, lunch, etc.

And now it's Friday again. Now I can see why my fatigue levels are what they are. If this kid complains on the first day of school about having done nothing this summer, I don't know what I'll do.

In the middle of all this activity, I had occasion to help out a long-distance friend with a problem she was having. I got it taken care of, and then moved on to the next thing, but a few days later she thanked me by reaching out to her extended friends, and imploring them to help out with Rachel's dog fund.

As a result of her effort, and a sale of more garlands, in a span of 3 days, we received $730 in new donations! Check out the thermometer. ---->>>> :) The first donation was from the friend I'd helped out, and I cried. Then more started rolling in, and by the time the 4th donation had reached the mailbox, I was a mess. I am so glad to have the people in my life that I do, whether they live near or far, or I have met them in person or not. These aren't just pixels on a screen to me; every one of my friends is real, and I love them.

Jam-making came to an abrupt halt when our visitors arrived, and I'm having a hard time finding motivation to begin again, but I have a bunch of berries to use before they get freezer burn, so I'd best get a move on. Still, this will be a much smaller effort than last year, when I canned almost 200 jars. It's just too much for one gimpy person.

So, as is often the case, I close this entry with gratitude. There is so much good in our life, and even on the bad days, we know we have friends; people who genuinely care, and want us to do well.

Thank you all so much-Kelly

Almost Summer

Hello again, Friends! I hope you all had a safe and enjoyable Memorial Day weekend. We kept things pretty quiet around here. 


Just two weeks of classes left before Rachel is free for the summer, and we are all ready for that break. Rachel has done a great job of staying caught up in her classes, and her grades reflect her efforts. She'll be a Senior next year, and there will be more challenges, but we feel like she's more up to them now than she has been in years. Online education is definitely a good thing for her, and we don't regret making that change for her.


I am so happy to share that the donation thermometer took a big jump today, with donations received in the last few days which total over $600! The largest portion of that was an incredibly generous gift from my brother's girlfriend. We are so grateful to all of our donors for their support and friendship.


I apologize again for not keeping up to date with this blog the way I should, but there is so much going on here with our life, school, and family issues that it's been difficult. I'm hoping that once school is out I'll be able to devote much more time to both fundraising and updating. 


Rachel and I have made a commitment to my cousin's dog rescue, to help her out with some events this summer, so that will be another thing to keep up with, but definitely something we feel called to do. 


Thanks again for being here for us, just following along with our story, sharing our story, and giving support. You really are integral to our success, and we appreciate you all so much.


-Kelly

VNS Surgery Day

Hello, friends and family!


What a day it's been. We woke at 4:30 this morning, and were out of the house by 5, in order to make it to Portland by our 6 a.m. check-in time. Rachel was the first surgery of the day, so we were hopeful that we might actually get to go home before evening.


There was a question about whether Rachel would have to stay overnight after her surgery, because of the leads. As it turned out, the leads didn't have to be replaced, she came out of anesthesia quickly, without feeling ill, and we got to leave the hospital before noon! Amazing. We were so happy.:)


Here is the only photo that Rach would allow me to take at the hospital. Note the fashionable sleepwear...

So now we're home, and I need to go pick up meds from the pharmacy soon, but there's more news! We have a new donation site at YouCaring.com. All donations made there for Rachel go directly to her account at Paypal, and it's easy to make anonymous donations that way. Please feel free to spread the link around.

As a result of our new site, and some really fantastic friends and family, I was able to increase the thermometer by over $600 today! We are incredibly close to being 30% of the way to our goal! Thank you all again for your amazing support and love. It means the world to us.<3

-Kelly

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.


-Kelly

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.


-Kelly

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.


-Kelly

Balance

Today was going fine, until about 3:30 a.m. Yes, a.m. We didn't even make it to dawn before a Bad Thing happened.

Brett had just kissed me goodbye for the day, and I had rolled over to take advantage of having the whole bed to myself, while he went out to the shop to enjoy his coffee, as he does each day before work. Minutes later, I heard a strange sound, and then heard it louder again, and realized it was coming from the monitor in Rachel's room. *insert really filthy word here*. I dove out of bed, grabbing for my glasses, and lurched into her room, to find her flat on her back, completely stiff, not breathing, eyes wide and dilated. I swiped her VNS, and pulled her onto her side, so she wouldn't aspirate, propped her up with a pillow, and ran out to get Brett before he left for work.


Rach came out of the seizure pretty quickly, but remained unconscious for some time, finally falling into a normal sleep after about 30 minutes, and then slept peacefully until about 7 a.m. Since Brett was already up and dressed, he let me go back to bed for a couple of hours (as Rach had experienced some insomnia and I didn't get to bed until after midnight), while he stood watch over the monitor, and then decided to go on into work when we realized that she was probably not going to be in imminent danger of more seizure activity. We have learned to be afraid of the possibility of SUDEP (Sudden Unexpected Death in EPilepsy), as these types of seizures are often the precursor.


As it happened, we already had a scheduled neuro visit set for this afternoon in Portland, so at least that was good timing on Rachel's part. We have a fabulous neuro nurse practitioner, named Bridget, and we got to talk with her for over half an hour, going over every single thing, and working on a plan of action for the short-term. We don't have a lot of solid answers yet, but we have some things to tweak and check out further, including the possibility of a battery or unit replacement of Rachel's VNS. 


Finally, we made it home from Portland just before 3 p.m., just sort of tired and bummed. As fate would have it, I opened Rachel's email, and found a donation from Deb, my friend-in-law, for $1500! Adding in bucket donations picked up this week, and a cash donation from a friend, we have a new thermometer total of over $7770.00!


This has been such an emotional day, with huge downs, and then a huge up. Sometimes the universe is able to balance the scales, but I wish we didn't test the theory quite so much. Rachel's back and neck are stiff and sore, and she's more tired than usual, but she's still okay, and still the really awesome, positive young woman she's always been. It's going to be another sleepless night for me, keeping closer watch, but that's a small price to pay. We'll keep this up as long as it takes to keep her safe, but we are really looking forward to having canine backup, and we're hoping it comes soon.
-Kelly

Happy Holidays!

Hello again, friends, and thanks for being so patient between updates!


The holidays are upon us, and we all know what that means; we're busy, we're stressed, and there don't seem to be enough hours in the day.


I've taken it a step further, and managed to fit in several medical/mental health appts. for both Rachel and myself, including a series of cervical epidural injections for me. Good times.;)


I made a vow when our fundraising journey began, and I intend to live up to it fully. That means that I have the joy of sharing today that we've received notice of another $50 in donations! We know folks have a lot of expenses this time of year, and everyone is clamoring for their donation dollars, so we are extra grateful for what comes our way.


We finally got our tree today, so now it's feeling more like Christmas for me, and once it's up and decorated, I'll take a photo and share it with you.


Whether you celebrate Christmas, Hannukah, Kwanzaa, the Solstice or choose to simply enjoy the turn of the seasons, we wish you all the best, and thank you once again for being there for, and with, us.


-Kelly

I've Always Loved Canada

So, I was sitting here, thinking that I needed to update the blog, even just with something brief, when I realized that I hadn't checked Rachel's email in a couple of days. Paws donation notices go to her because she's the client, but she is lousy about checking it.


Anyway, I open it up, and right at the top is a notice from Paws about a new donation. That's always exciting to see, but once again I've been bowled over at the amount donated. More of our extended Canadian family donated $1,000.00 for Rachel's dog. 


*pause to wipe my eyes, seriously*


My hands are trembling, and if Brett walks in from his errands right now, he's going to wonder why I'm sniffling. We have known Deb (Brett's Dad Gil's wife) for about 20 years now, but have never met any of her family. Still, they have been incredibly generous in response to her letting them know about Rachel's dog, and if Canada weren't so far away, I'd be there in person, squeezing the life out of them.:)


That thermometer over there -----> is now over $6100, and isn't that amazing?!


-Kelly

Happy Thanksgiving!

My favorite holiday of the year has arrived! The one that's all about sitting around a table, or in front of the TV, with the people you love most in the world, and sharing a meal. It doesn't have to be fancy, or have 6 courses, but that can be fun, too. It's all about recognizing what's good in your life, and making a conscious decision to acknowledge it.


We at Casa de Cobbie have much to be thankful for: 

• Friends and family that love and support us nearby
• An extended network of contacts and acquaintances, many of whom have become good friends, even though we've never met in person (thank you, internet!)
• Complete strangers who hear Rachel's story, and feel moved to help
• Organizations like The Chelsea Hutchison Foundation and PAWS, plus so many others, that work hard to help people like us
• Brett's continued ability and absolute willingness to work himself into the ground to make sure we have what we need. (This one is from Kelly & Rachel. Brett is our hero.)
• Rachel's overall good health, and improving state of mind. Her anxiety levels are way down from even just a few months ago, and she continues to work on being comfortable in public situations.
• Plus all of the 'little things' that aren't so little, and that we tend to take for granted; running water, electricity, heat in the winter, telephones, the internet (huge), private transportation, excellent medical care, and music.:)

We are rich in many ways, even though the bank account wouldn't show it, and we are grateful.

I almost made this post yesterday, because we received another very large donation, but I wanted to include it with my Thanksgiving post, so here it is... we have received another $500 donation from friends/family in Canada! The thermometer is now over $5100!

It's been a long road, and will be longer yet, but I know we'll get there. We have the best people in the world at our backs; how could we fail?

-Kelly

Another Big Donation Day!

Oh my gosh! Check out the thermometer today! The new total is $4686, with $525 of that coming from two donations from our extended Canadian family. Thank you so much for supporting us in this way. There is no way we can ever express fully our gratitude for this gift.:)


We are now very close to having 20% of our goal raised, and though it still seems very far away, we have raised a LOT of money in just the last few months, and just have to keep being positive. 


We truly could never do this without all of you behind us. Thanks so much.


-Kelly

Sunlight In Winter

One of my favorite things to do lately is check the mail. Today we had another letter from PAWS, a copy of a donation letter sent to a donor of $100!


We now have the thermometer up over $4100, and it's such a good feeling to know that every dollar brings Rachel closer to having her dog.


As the days get shorter, darker, and colder, it can be hard to keep our mood up, but every one of these letters is like a ray of sunlight, and just brightens my whole day.


Thanks again for being there for us.


-Kelly

Patience Is A Virtue

...Or so I've been told. I have told people in the past that it's never really been my goal in life to be virtuous, and I am lousy at being patient. The reason I mention this is that I was just sure that it had been at least 2 years since we made our initial application with Paws. Today I found that application, and it is dated May, 2010. I was wrong. It's only been 1 1/2 years, though that still seems like a long time to me.;)


Also, take a look at the thermometer! It says $4000.00 today! Technically, it should say $3999.78, but it rounds up, and I'm okay with that.:)


We got notice today of a single donation in the amount of $170, from someone I'm acquainted with via eBay, but have never met in person. I'm still astounded at the generosity of folks who only know me via a computer screen, but still are willing to help. 


We are blessed indeed.


-Kelly

Donations & Doggy Dreams

We've received another donation letter, and increased the thermometer by another $50, moving it up to $3830.00!


Rachel woke with a small seizure this morning, which left her tired and needing to go back to bed shortly after breakfast. When she's feeling kind of bummed by seizures we like to imagine that her Seizure Dog is one of the many puppies being raised by foster parents right now, just waiting for the time to be picked out and trained just for her.


Please keep sending those positive vibes and energy our way. We are so ready for that dog!


-Kelly

Big News!

In today's mail was the copy of a letter, sent to my California Mom, acknowledging her incredible donation of $1,000.00!! This is huge, and we are so grateful.:)


So far, we have earned, or had donated, over 10% of the needed monies, and if we include the grant from CHF, we've got about 20%. Seems like a long way to go yet, but we know we'll get there.


Rachel did end up having 2 more seizures since my last update, but they were smaller than most, and this month's 5 is a lot less than the 11 in September. We continue to hope someday she won't have to worry about them anymore, but in the meantime we look forward to Rachel having her Paws companion to help keep her safe.


Please continue sending good thoughts, prayers and positive energy our way. Every day I hope to get some news from Paws about Rachel's dog.


-Kelly

Donations & General Update

I love it when I can come in here, and give an update that we've received donations. Today we've increased the thermometer by another $99.90, which includes the check from Baja Fresh!


I am also aware of another two donations that I don't have final confirmation for, so won't include them until I do.


We have some wonderful friends who have been brainstorming with us on ways to increase funds, and Rachel has been coming up with a few ideas, too. I am a very amateur knitter, and she's wanting me to do a couple of simple projects that we could maybe sell on my Bonanza.com page, so we'll see what comes of that.


I haven't located our copy of our original application with Paws, but I'm pretty sure that it's been about 2 years now since the initial application. It feels like we've been doing this forever, even though we've only been in fundraising mode since late July. We have a long road yet, and I'm trying to have patience with the process.


We made a small medication increase this month, and Rachel has had fewer seizures than she did last month, which is fantastic. September saw 11, and so far October has seen 3, but there are still several days left, and who knows what will happen next.


She's plugging along in school, and is more independent in her study, but still struggles with impulsivity, and then feels terrible when she doesn't do well. We're working hard on learning to take good notes, something she never seems to have been taught in her regular schools. Along with writing in cursive, note-taking seems to be a lost art.:/


Thanks for checking in with us. I look forward to updating again soon, and sending that thermometer up some more.


-Kelly