Last Post of the Year

I hope you all enjoyed whatever festivities you took part in over the last week or so, and are looking forward to what the new year might bring.


We had a busy Christmas weekend, full of family and good times, but as always, I am somewhat relieved to have it behind us for another year.


Here's a photo of Rachel with one of her favorite gifts...bonus points for knowing the character's name!*

Rachel has been doing well since the medication mishap of a couple of weeks ago. There have no more seizures since last Friday morning, and Rachel has been much more involved in managing her meds and remembering to take them on time.


If I don't have opportunity to make another post before the 1st, I want to be sure and wish you a very Happy New Year. May it bring blessings and happiness your way.


*The character is GiR, from the Invader Zim animated series, along with the piggy spaceship.


-Kelly

Mea Culpa/Stupid Human Tricks

I screwed up. Big time. As a result, Rachel suffered through two seizures yesterday, and I don't know yet if there will be more today, but of course we are really hoping not.


We have a weekly pill minder, which I fill for Rachel, me being the responsible adult who monitors her meds for her. We have a smallish, plastic tote, which contains all of the many smaller plastic bottles from the pharmacy and the vitamin section of the drug store.


Each week I sit down with the pill minder and the tote, dole out meds and vitamins, and supplements, taking note of which ones need to be refilled soon, etc. I don't know what happened with this week's filling process, but clearly my mind shut off at a critical moment, because I short-filled one of her seizure meds, which caused the blood levels to drop, and caused the seizure activity that we saw.


I am sick to my stomach about this, and have been on alert for more seizures overnight, though Rachel seems to have slept peacefully, and I will be getting her up soon. 


In more than 8 years of handling Rachel's meds, I have never made a mistake like this, and certainly wish it hadn't happened now. Brett has offered to double-check the tray for me each week, and reminded me that Rachel is almost 17 years old, and needs to be more aware of what's she's taking each day. I'm not too worried about that part yet, though it is certainly a skill she'll need to have moving forward.


So, I'm not asking for sympathy, but had to share what happened, in the interest of full disclosure. The drug plan we have in place works pretty well, or had been, except for the occasional break-through partial, which we just can't seem to totally control. I guess it's important to be aware of how close to the edge we are with control over the TCs, and know to avoid that line with more diligence.


-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

Kittens & Giving Thanks

We are now just about a week and a half out from Thanksgiving, and I have been in the habit of giving thanks for something each day this month, and posting it on Facebook, in addition to an Epilepsy Awareness fact.


I have found this exercise to be enlightening to me, and a good reminder of how blessed we really are, even in times that can be trying.


This last weekend we visited with my Mom, and got the chance to play with some really little kittens she's fostering. We'd love to have one, but both Brett and Rachel are allergic, so no dice. Here's a photo...

Then last night the neighbor girl came over and asked if we'd babysit her guinea pig while her family is away for Thanksgiving. Heck yeah! She's a sweet little thing, and we're looking forward to it.


So in addition to all of that goodness, I updated the thermometer today by another $61! I will try and make another post before Thanksgiving, and will certainly do so if more donations are received, but if I don't, I want to be sure and wish you and yours all the best. Enjoy each other. Thanksgiving is my favorite holiday.


-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

Call Me Scarlett...

You know, I've never really felt as though I had anything at all in common with Scarlett O'Hara. Today I find that that isn't quite true.


I had gone out early to do my grocery shopping. Brett was home with Rachel, and I could shop alone, taking my time, and making sure I got everything we needed.


I was standing in the checkout line, and the cover of the People magazine caught my attention (as they're designed to do), featuring Kim Kardashian's marriage/divorce debacle. The woman in line ahead of me clucked her tongue and said how foolish she thought it was that so much money was spent for nothing. I agreed, and told her what my mother had said about it, that so many people could have been provided with seizure response dogs. I told her that we are currently in the process of raising funds for Rachel's dog.


She finished her checkout, and I was unloading my cart onto the belt, when I felt her hand on my arm. I looked up, and she was holding out a couple of folded bills. It was $6, and she apologized that she didn't have more on her, but wanted me to have it for Rachel's dog.


I was gobsmacked, and immediately teared up, but managed to choke out a thank you, though I forgot to ask her name. We are incredibly thankful for every donation made in Rachel's name, no matter the amount, but somehow the ones that come from strangers have a special impact, and really help me remember how much goodness there really is in people.


So, in relying on the kindness of strangers, I have become a bit like Miss Scarlett, and I'm learning to embrace that part of me. It's a journey for someone who's always been very independent, but getting Rachel what she needs to be independent has to come before my pride.


-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

Epilepsy Facts And Figures

November is Epilepsy Awareness Month. In honor of this, I am sharing this information from the Epilepsy Foundation. Please make particular note of the items in Bold. This is why Rachel needs a Seizure Response Dog:

Epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke. It is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined.


 Epilepsy is not a single entity but a family of more than 40 syndromes that affect 2,700,000 people in the U.S. and 50,000,000 worldwide.


 Epilepsy strikes most often among the very young and the very old, although anyone can get it at any age. In the U.S., it currently affects more than 326,000 children under age fifteen and more than 90,000 of them have severe seizures that cannot be adequately treated.


 The number of cases in the elderly is beginning to soar as the baby boom generation approaches retirement age.  Currently more than 570,000 adults aged 65 and above in the U.S. have the condition.


 Epilepsy imposes an annual economic burden of $15.5 billion on the nation in associated health care costs and losses in employment, wages, and productivity.


 The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is 24 times greater.


 This year another 200,000 people in the U.S. will be diagnosed with epilepsy and an estimated 25,000 to 50,000 will die of seizures and related causes, including status epilepticus (non-stop seizures), sudden unexpected death in epilepsy (SUDEP), drowning and other accidents.


 Epilepsy and its treatment produce a health related quality of life – measured in days of activity limitation, pain, depression, anxiety, reduced vitality, and insufficient sleep or rest – similar to arthritis, heart problems, diabetes, and cancer.


 Thirty to forty percent of people with epilepsy are severely affected and continue to have seizures despite treatment.


 Of major chronic medical conditions, epilepsy is among the least understood even though one in three adults knows someone with the disorder.


 Lack of knowledge about proper seizure first aid exposes affected individuals to injury from unnecessary restraint and from objects needlessly forced into the mouth.


 The leading non-medical problem confronting people with epilepsy is discrimination in education, employment and social acceptance.


 Epilepsy is prevalent among other disability groups such as autism (25.5%), cerebral palsy (13%), Down syndrome (13.6%), and mental retardation (25.5%).  For people with both cerebral palsy and mental retardation the prevalence is (40%).


 The association between epilepsy and depression is especially strong.  More than one of every three persons with epilepsy are also affected by the mood disorder, and people with a history of depression have a 3 to 7 times higher risk of developing epilepsy.


 Some people with epilepsy do not even know that they have it, having been told they have a “seizure disorder” instead.  This unfortunate euphemism arose because of the historical stigma associated with epilepsy, which the Epilepsy Foundation and others have fought to dispel.


 It is 14 years on average between the onset of epilepsy and surgical intervention for seizures uncontrollable by medication.  American physicians may be unaware of the safety and efficacy of epilepsy surgery, making it among the most underutilized of  proven effective therapeutic interventions in the field of medicine.

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

Baja Fresh Fundraiser Total Is In

I haven't forgotten about this blog, I promise! I keep thinking that I need to make a post, but haven't had much to share, and then Brett's dad came down from Canada for a visit, and we were happily busy with him for 5 days.


Here's a photo of Rachel with her Grandpa Gil...

I just returned from Baja Fresh, with the check from the fundraising night we had. I want to thank everyone who was able to help out by coming out to eat, and we are grateful to Baja Fresh for hosting the event. We netted $40, which I have to admit is quite a bit less than I had hoped for, but more than we had yesterday.

We will continue to look for fundraising opportunities, and ask you to share any good ideas. As always, Thank You for being there for us, and for your good wishes.

-Kelly

Big Donation Day!

Rachel and I had some errands to run today, so we took a side trip to Everything Pawsible so we could check on our canister there. We got to say hello to Melody, talk baby talk with the daycare doggies, and ogle the merchandise we hope to buy for Rachel's future dog. We also were pleased to net another $6 out of the canister. Melody says she's not tired of it being there yet, so it stays.:)


By the time we returned home the mail had come, and in it was an envelope from PAWS! Two more donation letters, this time from a couple of my cousins, and their donations totaled $200! My cousin Niki challenged the family to meet her incredibly generous $100 donation, and cousin Lori did it. I can't thank them enough for this gift.<3


So, we have broken the $2500 mark in a big way, and I don't yet know what the Baja Fresh day brought in, but hope to very soon. You can count on me to be putting it up here ASAP.


-Kelly

The Big Baja Fresh Day Is Here!-Edited

Today is the day, and we are so excited! Really hoping for a good turn out, so if you're hungry, come by, say hello, and get some really great food, too.


This is what I'm wearing today, so you'll know me when you see me...we'll be there for the lunch hour for sure, and hopefully for the dinner hour, too. Please stop and say hello, so we can thank you for coming out.:)

ETA-We had a fabulous lunch, and were very pleased to see that about 10 flyers got used while we were there, though we didn't see anyone we knew, and nobody approached us. Brett got in a bit of trouble for handing out flyers outside the store. I told him that would happen, but he's so motivated to get the fundraising moving, I can't be annoyed with him. We took a couple of stacks of them to local businesses, and then went home.

Unfortunately, we did not go back at the dinner hour. I've been fighting what feels like a cold for a couple of days now, and my RA doesn't like it, and Rachel had some school work that she really needed to concentrate on. We decided to stay home instead. 

If you are one of the folks who came out to support Rachel, we can't thank you enough, and we're sorry that we missed you. Baja Fresh is a busy, loud place on weekends, and Rachel doesn't always do well with that. As soon as I know what our tally is, I will post it here. Thanks again!

-Kelly

Baja Fresh & Joe Mocha

Hello Friends!


Don't forget about our Baja Fresh Fundraiser this coming Saturday, October 8th, at the Salem, Oregon location. We are looking forward to seeing our friends and family there, and plan to be there ourselves at both the lunch and dinner hours, so be sure and stop by for some great food, and to hang out and chat for a bit.


If we've never met, but you're coming in to support our efforts, be sure and look for the pink Chelsea Hutchison Foundation pins we'll be wearing, and come say hello! We'd love to meet you, and thank you in person for your support.


I'd also like to say 'Thanks' to Kelly and our friends at Joe Mocha, here in Salem. They have agreed to share our blog info, and support us in that way. Joe Mocha is our favorite local coffee and snacks place in Salem. Kelly has fresh and unique foods available, in addition to fantastic coffees and other drinks. We've been enjoying their offerings for almost 10 years.


I'm also very pleased to share that we've increased the thermometer by another $60 today, and we are inching ever closer to the $2500 mark! Thanks again, everyone.


-Kelly

Donations & Visitations

The thermometer is $30 warmer today, and a little birdie told me that I should soon see another lovely boost, so I'm very much looking forward to that.:)


Rachel continues to work hard at school, and deal with the seizures in between. She is one of the most positive people I know, and always tries to see the silver lining, but seizure days can make keeping a positive outlook difficult.


We are looking forward to a visit from Brett's father next week, so I may be even less talkative than I am now for a few days. Believe me, if we get notice of donations, I will take the time to update.


-Kelly

We Love Local Media!

A huge Thank You to Salem-News.com for sharing our fundraiser info! Please visit their site, and stay up-to-date on what's happening in Salem, the country and around the world.

While you're there, go ahead and print off the Baja Fresh flyer. We can't wait to see all of our friends on the 8th.;)

-Kelly

They're Here; Baja Fresh Fundraiser Flyers!

We have Baja Fresh flyers! If you think you might be able to make it in at any time on October 8th, whether to Dine In or Take Out, please print off this photo and bring it with you...the flyer must be presented at time of order, so we'll get the 15% donation.

 If you can't print it, but wish to join us, just let me know, and I'll send you one.:)

-Kelly

Fundraiser Night October 8th!

Finally we have our Baja Fresh fundraiser night planned! Saturday, October 8th is the date, and soon we will have the fliers available for anyone who'd like to join us for dinner.


All you have to do is visit Baja Fresh on Lancaster Drive, in Salem, order your meal, and present our flier. The Chelsea Hutchison Foundation will then receive 15% of the total of all receipts with fliers attached. Julie Hutchison has been incredibly supportive of our efforts to raise funds for Rachel's dog, and we are working closely with both PAWS and CHF to achieve our goal. We will have extra fliers at the restaurant if you forget yours.;)


If you want to be sure you get a flier, please message us here, and I'll make sure you get one, or 20 if you want to help spread them around. All messages are screened before posting, and if you don't want yours posted publicly, just say so.


Also, two more donation letters in the mail today, and an increase of $80 to the thermometer. It's moving more slowly these days, but we're hoping for a good turnout for the fundraiser night, so maybe we'll have a big increase soon.


-Kelly

School and Blogs

We don't have any exciting news to share right now, as our days are taken up with school. High school is a lot harder now than it was in the early 80's, and Rachel is spending about 7 hours a day at her studies, and sort of struggling to stay caught up.


On the upside, her grades are good, and she's still engaged in the process, though there is some occasional whining when it comes to test-taking. There's a definite anxiety there.


Also, Rachel has decided that she'd like to start her own blog, and talk about what it's like to be her, while sharing random bits of her life. When she gets around to getting it published, I'll be sure and link from here, so you can all get to know her a bit better. I think you'll like her.:)


-Kelly
ETA: After posting this, we received two more donation notifications in the mail, so I increased the thermometer by another $100 today! Thanks so much, everyone.:)

Tears of Joy and Gratitude

A couple of weeks ago I received an email from my dear friend Cindy, letting me know that she had sent of a series of checks to PAWS, from folks who had either purchased donation items, or just wanted to help out with the fundraising.


Since I made a commitment to only update the thermometer when I receive official word from PAWS, I put it out of my mind.


Today I checked the mail, and found a rather thick envelope from PAWS. Inside were our copies of the letters sent to the donors. As I looked over each one, addressed to friends and strangers alike, I felt myself tearing up, and now I'm doing it again.


Those letters touched my heart, because I know that in the moment those checks were being written, somebody was thinking of Rachel, and wanting her quality of life to be better. 


I am saving those letters, and I would love to say that I will be able to send out individual thank you cards when this is all over, but that's probably not realistic. Please know what a difference you have made for Rachel, and for our family. When the time comes that Rachel receives her dog, it will be because of you, and we will never forget that.


So, while I try and type with running eyes, I have a huge smile on my face when I tell you that I increased the thermometer by $243 today!


-Kelly

Thermometer Update!

I know it's been almost a week since I updated last, and I'm sorry for that, but it's been pretty busy in our home life, and not so busy in our fundraising life as a result.


I am very glad to say that I was able to increase the thermometer by another $72 this morning, bringing us to almost $2,000.00 in donations! 


Rachel had a few partial seizures over the last two days, and so has some make-up work to do for school today, keeping us pretty close to home. I am anxious to find time to set up our fundraiser night with Baja Fresh, and really hoping to have that done by the end of the week. Details to come, of course.


Thanks so much for sticking with us, and I hope to have something more exciting to share with the next update.


-Kelly

Canisters, Fliers and Dinner

We've gotten past the first week of school, and if it isn't with flying colors, at least it's not horrible. It's getting easier for Rachel as she goes along. Adjusting to a new school takes time, whether it's online or not.


So, today we finally got back out, and continued on with some of our 'advertising'. We stopped in and checked on our canister at Everything Pawsible, switching the first one out for one with the new cards made for us by Cindy.

We think they look pretty spiffy, and we hope to have more of them around town soon. We also stopped in at Roth's on Lancaster, and put up one of the fliers with the tear-off tabs on their bulletin board. They don't allow just anyone to put up canisters.

Also, we'll be setting up a fundraiser night with the Baja Fresh on Lancaster Drive, so watch for the date on that, and if you want to join us and don't have a flier for the event, just ask, and we'll be sure you get one. You'll need to present the flier in order for us to get the best possible donation.

No increase to the thermometer today, but I know of a few donations that haven't gone through yet, so it will be going up soon.

-Kelly

Small Update

I'm very pleased to update the thermometer by another $155!


Things have slowed down just a bit since the manic jam-making days, but school has started now, and that's taking quite a bit of my time. I can't just leave Rachel at home, and go out to put up fliers, or do fundraising. She has to go where I go, unless Brett is home, and he's working 10-12 hour days lately.


We do have a couple of things we're going to be be trying, and when they're a go, I'll be sure and update here, so everyone can join in, or follow along.


Thanks for hanging in there with us.:)


-Kelly

Donation Item Box Now Active

Just a short update today, to bring your attention to the new box in the right-side column, highlighting the items we currently available for shipping.


If you make a $10 donation at Paypal to raisethewoof4rachel@gmail.com, we'll send you one of the custom-designed cosmetic bags, and the original art cards will be shipped for a $2 donation each. Just leave instructions for quantity and style when you make your donation, and we'll get these items shipped out to you ASAP, with free shipping to U.S. addresses!


The instructions for making a direct cash donation to Rachel's PAWS account have moved to the left-side column, in an effort to reduce confusion for folks. Please note that the PAWS instructions are not to be used for ordering donation items.


Thanks again for reading, and for your support.


-Kelly

Our First Donation Canister Is Now Active!

We'd like to say a huge "Thank you" to Melody at Everything Pawsible! You have the distinction of being the first business to host one of our donation canisters, and we can't thank you enough.


I've started a box on the right side of this page, where I'll be sharing the contact info for any business or individual who hosts one of the canisters. 


The lovely Cindy has created some info-cards for us to share around town, so I'll also be taking them into places that might not want a canister out. Salem is about to be sick of seeing my face.:)


-Kelly

First Day of School

It's the first day of school for Rachel, a full week before her friends, but that's okay, we're ready. Well, I think we're ready. I'm ready. I'm pretty sure she'd be just as happy to stay in bed.


Rachel and I finally made it to the coast yesterday. We usually make it to the beach more than once during the summer, but we kept waiting for the weather to cooperate, and then when we finally had a plan to go, the big seizures happened.


So, yesterday we decided we were going, regardless of weather, and it turned out to be a beautiful day.

Okay, not the best pic of Rach ever taken, but she was getting tired. I mainly wanted to show the blue sky and the gorgeous topography of Neskowin Beach. It's only a little over an hour drive from us, and away from the serious bustle of Lincoln City.


Also, I've updated the thermometer today, to include another $235 in donations to Rachel's dog account! Thanks so much, everyone. I'm supposed to go back to one of the businesses I approached about letting us put out a donation canister today, but have to wait for Rach to be done with school for the day. I will be sure and update on that later.


-Kelly

Back To School!

I feel like we're off to a good start with the blog, and I hope to not lose that momentum, but Rachel's school year begins on Tuesday, and since it's a new experience for both of us, there will be a period of adjustment, and a lot to learn.


Rachel will be attending Connections Academy online, and as her Learning Coach, I have certain responsibilities to take care of each day she is studying. I'm hoping that once she gets settled into her new routine, I'll have more time to concentrate on other things.


I also wanted to let you know that, since the seizures of Tuesday/Wednesday, there have been no more. We have every hope that the tonic/clonics are now managed once again, though we do expect to continue seeing the partials from time to time. I will be taking Rach in to get a blood draw on Monday evening, so that we have a better idea of what her medication levels are. This can help her doctor make a more informed decision about dosages.


I will continue to update each time we get donation notifications from PAWS, and whenever we have a new fundraiser or outreach opportunity. Thanks for keeping up with us, and feel free to offer fundraising advice and ideas.


-Kelly

Donation Canisters

It was suggested that, as part of our fundraising efforts, we should approach some local businesses, and ask if they would allow us to place donation canisters at their registers.


*shudder* This is so hard for me, but I put on my big-girl panties, and have approached two places so far. One said no (and they were really nice about it), but the other said 'probably'. I just have to go back on Tuesday to speak to the person in charge. 


I let them know that I would be happy to place links to their businesses here on our blog, in return for their counter space. If you have a business, and would be willing to host a donation canister, or know someone who does, please leave a comment with your contact info, and I will be in touch. All comments are screened before posting, and I won't post private info.


In other news, I was very gratified to open Rachel's email, and find notifications of 4 more donations made to Rachel's PAWS account, totaling $140! Thanks so much. There is no amount that's too small; it all adds up, and we are grateful for your generosity.


-Kelly

It's Heating Up!

I realized today that notices of donations made to Rachel's PAWS account are being sent to her email, not mine, which makes sense, but she's awful about checking her email.


Anyway, now I know that I need to check it regularly, so that I can keep an accurate record of things. Today I increased the 'temperature' on the donation thermometer by $130!


Thanks so much to everyone who has made a donation.:)


-Kelly

The Day After

Yesterday was a bad day. It wasn't bad enough to end us up in the hospital, but it was bad enough that we were reminded quite vividly of what those days felt like, and how much we don't to want to relive them.


I've always felt that Rachel's epilepsy was not a good thing, and I like to think that I don't wear rose-colored glasses, or else we wouldn't be in the process of getting her a Seizure Response Dog, but I have felt that maybe her seizures weren't really bad enough to warrant the dog. I sometimes thought that we were overreacting, and that she'd be able to eventually make her way without that assistance, and it was just a matter of time before things got better.


I had my bubble burst in a big way Tuesday night. Those nasty, huge, ugly TCs are lurking just under the surface of a chemical cocktail that holds them prisoner, and we never know when that cocktail might fail. Meds can lose their efficacy over time, people can make mistakes, and before you know it, you're staring at someone you love while they thrash their way through an electrical storm that takes place in their brain, and exhausts their body.


Opening up this blog to the eyes of potentially thousands of strangers is one of the hardest things I've ever done, but I believe now that it is imperative that we are able to help Rachel get this resource that will allow her to move more safely through the world. The dog won't be able to stop a seizure, but it will be able to alert that she needs help, and stay by her side until she gets it.


As her parents, the prospect of letting Rachel go out into the world on her own is frightening, but we recognize our responsibility is not to hold her back, but to give her the tools to go out that door with the confidence that she has everything she needs to be independent. 


Last night was better, and Rachel only had one partial seizure, at about 3 a.m. Believe it or not, that was a relief. It means that the med levels are coming back up, and we may have the leash on the TCs again. I'd like to stuff those suckers about 10 feet underground, and never see them again.


-Kelly

Harsh realities

Throughout the process of creating this blog, and keeping you all updated on our fundraising efforts, I've sort of intentionally kept the tone very light. It's no fun to read about doom and despair, after all, and I get that.


Today, though, it's hard for me to be upbeat, and this is a part of living with epilepsy. Whether it's yourself, or someone you love that has it, there will be bad days; days where you doubt yourself, your doctors, and your ability to cope.


Yesterday morning, Rachel missed her early dose of her medications. This is generally her lower dose of the same meds she takes in the evening, and the same meds she's been on for quite awhile now. Usually, I am all over her to take them on time. For the first time in at least a year, they got missed.


The result is that at about 10:40 p.m. last night, Rachel experienced a tonic/clonic (formerly grand mal) seizure, which hasn't happened in at least 5 years. We were scared, but realized she'd missed the meds, and hoped that would be the last of it. This morning at about 6:40, she had another one. 


These seizures go on for more than 3 minutes, with low oxygen, blue lips, bitten cheeks and tongue, and convulsions. Now we're really worried. We have emergency meds here at home, called Diastat, but fortunately didn't have to use them, and we really hope we're over this particular episode now. I have called her neurologist and they say to just wait it out, as it takes time to get those med levels back up in her blood.


It's incredibly hard to wait. We're exhausted, and scared. Brett is here to help me, and I am so grateful. We'll take turns being up with her, while the other tries to catch a little sleep. More than ever, it's things like this -stupid human error- that reinforce how much difference a Seizure Response Dog could make in Rachel's life. What if we weren't there? I don't even want to think about it.


-Kelly

Custom Bags & Note Cards

In addition to the jam that we made for sale, and are now almost out of, we have available some really awesome custom-designed cosmetic/stuff bags, only $10 via Paypal to raisetheWOOF4Rachel@gmail.com. Shipping is free within the US....

In addition, we have blank note cards featuring original art by Rachel, which measure 4 1/4"x 5 1/2". We're selling them for $2 each, with free shipping within the US. Just use the same Paypal address as above, and let me know your requested quantity and mailing address...

If you have any other ideas that you think might work for us as fundraisers, please feel free to comment. Comments will be screened before being displayed, so don't be surprised if they take awhile to show here. I will see them.

-Kelly

Thermometer Tampering

There's something that you should know about me: I am a wibbler. I will sometimes make a decision, and then think better of it, and change my mind how about how to go about things. 


In this case, it's about the little fundraising thermometer on this page. In the beginning, I opted to include in our funds raised the $2500 grant from The Chelsea Hutchison Foundation. We're still getting the grant, but the way it works is that they give the final $2500 needed toward a dog, so technically we don't have it yet, and I don't feel right including it, and giving a false impression of where we are right now.


What I intend to do instead is to update each time I personally make a deposit of funds to Rachel's account, or I receive word from PAWS that someone else has. I don't know what their schedule is for generating that information, but I promise to update as soon as I know.


So, that explains why that thermometer is looking much 'colder' than it was yesterday. Today I made deposits totaling $1218.88! A full $850 of that was from the yard sale alone, with the rest coming from jam sales, and cash donations. I know for a fact that other donations have been made, but I don't have an official declaration from PAWS, so can't guess what the total is.


-Kelly

Day 2 of the Sale

Hello again, friends and family!


Day 2 is behind us now, and was even more profitable than Day 1, but it was also 95 degrees out today. Fortunately, our fabulous neighbors were kind enough to lend us a sun shade, so we were protected from the worst of it.


Our earnings for the first two days are just over $700! We are surprised, but thrilled, of course, and I am very much looking forward to being able to make a sizable first deposit into Rachel's Paws account when this weekend is over.


We have just one day left, and we don't want anything out there to come back into this house, so we will be making some great deals.


We will still have a long way to go, but I am feeling more confident that if we just keep plugging along, the fundraising period might not take as long as I'd feared. 


With all of you behind us, we can't fail. Thank you so much for your support and encouragement. We really are depending heavily on our 'village' to help this child get what she needs to safely make her way in the world.:)


-Kelly


ps-I have just gone back to edit about 5 errors, so please forgive any others, as I am super tired, and just can't concentrate enough to spell, or use proper grammar.;)

Great First Day!

The first day of our sale has gone quite well. The weather was lovely, we had lots of help, and the mood was light. We met some lovely people, sold some unneeded items, and got to talk about epilepsy and Assistance Dogs.


Best of all, we made just over $300 today toward Rachel's dog! We still have lots of great things available, and there will very likely be things put out tomorrow that weren't there today, as we continue to dig through storage areas, and more friends chip in their donation items.


Here's a picture of the three of us, with Brett as Arnie....

The Big Sale Weekend Is Here...Ack!

Yesterday afternoon was spent in the hot garage, sorting, organizing, and pricing the very large pile of items we had gathered from our home, and had donated from a few family members and friends. There's a lot of stuff there. We pulled out of our family room the large, and super heavy, reclining sofa and loveseat, too. It's not going back in, so I hope it sells.


The art cards we had made came out looking really good, and I spent some time in the evening folding them, and putting them with their envelopes, and printed out some informational fliers that Cindy created for us to put out for folks.


I wanted to have an image to share with you this morning, so I took a picture of the ginormous Yard Sale sign Brett made, along with a flier, one of the cosmetic bags, and Rachel's art cards...

I hope to have an opportunity to take a few more pics during the sale, but I expect to be pretty busy. Brett put an ad on Craigslist, and included an extensive list of the types of things folks could find here. We really do have everything from car parts to kitchen utensils. It should be exciting, and I wish you could all join us, even just to hang out for a couple of hours.


-Kelly

Garage Sale Eve

Good morning, friends and family!


I'm up way too early again, but it's the day before the big sale, and my mind won't let me sleep, so I might as well get busy.


Rachel has an appt. with her neurologist today, up at Doernbecher. It's a regular, 3 month check-in, where we discuss how meds are working, and whether there have been any changes. Our neurologist was a motivating factor in getting us to apply for an Assistance Dog for Rachel, so she'll be interested in knowing that Rachel was finally accepted.


Then it's back home, where we'll be in full-on sale prep mode. It's a good thing I'll have help today, as there's a lot of stuff to be handled, and organized.


So, that's as exciting as it gets here today.:)


-Kelly