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.
-Kelly
Tuesday, January 10, 2012
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.
-Kelly
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
Tuesday, December 27, 2011
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
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
Friday, December 16, 2011
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
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
Thursday, December 15, 2011
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
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
Saturday, December 10, 2011
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
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
Friday, December 2, 2011
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
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
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