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
Tuesday, August 30, 2011
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
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.
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
Sunday, August 28, 2011
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
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
Friday, August 26, 2011
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
*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
Thursday, August 25, 2011
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
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
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
Wednesday, August 24, 2011
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
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
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