My leukemia's back.

[N F C]

Good morning, Team. Kinda rough today, but I'm rougher. Today would have been Linda's birthday. I don't miss her as much as I was afraid I would - I miss her 10 times more! Yesterday I had the phone in my hand to call her and tell her that Tam finally closed on her new house. I do that all the time!

Kendra's down hard with her first UTI since her stomach surgery 2 years ago. Jen took her to the ER Sunday morning, and it took a Tylenol suppository to get her temp DOWN to 103.5. While they were working on Kendra, Jen dropped and had a seizure. Ken and I were in Cody, Kenny was working in Powell, so they took care of both of them until one of us could get there. Kenny beat us there, and by then Jen was resting with an IV in one bed and Kendra was curled up next to her with her antibiotic IV. Her temp was down to 100 by then, with the second suppository and a cool infusion in the IV. Jenny always has two seizures - the second one might be hours later but always two. Sure enough, later that night she had another one standing in line at McDonalds, who promptly demanded an ambulance. Kenny tried to explain that it wasn't necessary - that we all know exactly what to do and how to take care of her, but nope, the ambulance came. They checked Jenny's vitals, Kenny signed a release, and they came home. So I took Katie to school yesterday, brought the two sick ladies over here, then Tam and I left for Greybull for the closing on her house. What a day! But Kendra and Jenny slept most of the day - Ken was here with them - and Kenny came to pick them up at 4. Then I made supper for Tam, Evan, Ken and me. Tam and Evan cleaned up while I went to bed and I didn't wake up until about half an hour ago. I'm too old for this kinda stuff!!

A rough day is right! Hopefully everyone has a better day today B!

 

[sourland]

Good morning, and wishes for a good day, Team Rachel.

 

[Blooie]

Yep, did that after my mother died. SO SORRY about Kendra and Jenny. What an eventful day. How often does Jenny have seizures? I guess whatever medicine she is on is only 'so' effective.

When Jenny takes her medication as prescribed, she can go years seizure free. When she does have them, they are bad...total Grand Mal seizures with no aura first. And if she has one, she will have a second one within 12 hours. Always. Every time. She is extremely dose sensitive - not enough and she'll seize, too much and she'll seize. She gets her meds through the Prescription Assistance Program. They dropped the ball and her refill hasn't come yet. She was scared that she'd run out, so she cut back by one pill to get her through until the new meds got here. Yeah, didn't work so well. And she didn't tell anyone that was what she was doing, so we weren't watching. We've told her before that if that happens, we'll pick up enough at the drug store to get her through, but it ain't cheap.

Yesterday the School Resource officer pulled her driver's license for 3 months, and told her he'd informed the highway patrol, the town cop, and Sheriff Blackburn that she is not to be driving. So now she has Kendra, a job, Katie, Kenny works, and she has no way to get them anywhere. She shouldn't be driving anyway, we've told her before that she is not only responsible for herself if she seized while driving, but for Katie and Kendra and everyone else on the road. But with no public transportation in our area, what are ya gonna do? We'll be gone most of September, October, and November. I did try to arrange for the special ed bus to pick Kendra up and then bring her home, but Katie and Jenny will still have to walk to the high school. Nothing else to do for it. When I went to pick up Kendra yesterday, the school resource officer was standing in front of the parking area of the school watching for Jenny, and then he followed me to the high school to pick up Katie. It was a mess....the principal of the elementary school has hated me since Jamie was in middle school, so she just sat across her desk glaring at me, telling me that I wasn't allowed to pick up Kendra because I wasn't on some "dismissal" list. I'm on the list to be called and to pick her up if she gets sick, but I can't pick her up without Jenny's authorization. Fine, Karmen.....call Jenny. Then she said it was late in the school year and she didn't know how long it might take to arrange a bus for Kendra - if she even could.

I lost it. I told her she WOULD arrange for a bus, or face a violation of the ADA. BY LAW, transportation to public school for kids with disabilities isn't an optional amenity, it's a requirement. And I reminded her that for 3 years Ken and I took Kendra to and from school, often with her highness standing right there in front of the car supervising school dismissal, and that I had done so the day before while she stood there talking to a teacher. All I could get was "I'll see if there's anything I can do." So I'm sitting in the parking lot waiting for Kendra, the resource officer is standing there in front of my car, joined by Karmen and the head of the school special ed services "chatting". Keisha brought Kendra out and when we went to the back of the car to load the wheelchair, she asked me why I was crying. Because I'm so doggone tired and so mad!! When I told her she said, "OH, no. As Kendra's aide, I'm telling you that she has to provide that bus, and right now so there's no interruption in services to Kendra. And she's talking to the man who will tell her so, just watch." I left the elementary school to go get Katie, and when I got the girls home Jenny was on the phone with Karmen. Jen said she was just as nice as she could be, the bus would pick Kendra up first thing in the morning, and Jenny had nothing to worry about.

 

[perchie.girl]

When Jenny takes her medication as prescribed, she can go years seizure free. When she does have them, they are bad...total Grand Mal seizures with no aura first. And if she has one, she will have a second one within 12 hours. Always. Every time. She is extremely dose sensitive - not enough and she'll seize, too much and she'll seize. She gets her meds through the Prescription Assistance Program. They dropped the ball and her refill hasn't come yet. She was scared that she'd run out, so she cut back by one pill to get her through until the new meds got here. Yeah, didn't work so well. And she didn't tell anyone that was what she was doing, so we weren't watching. We've told her before that if that happens, we'll pick up enough at the drug store to get her through, but it ain't cheap.

Yesterday the School Resource officer pulled her driver's license for 3 months, and told her he'd informed the highway patrol, the town cop, and Sheriff Blackburn that she is not to be driving. So now she has Kendra, a job, Katie, Kenny works, and she has no way to get them anywhere. She shouldn't be driving anyway, we've told her before that she is not only responsible for herself if she seized while driving, but for Katie and Kendra and everyone else on the road. But with no public transportation in our area, what are ya gonna do? We'll be gone most of September, October, and November. I did try to arrange for the special ed bus to pick Kendra up and then bring her home, but Katie and Jenny will still have to walk to the high school. Nothing else to do for it. When I went to pick up Kendra yesterday, the school resource officer was standing in front of the parking area of the school watching for Jenny, and then he followed me to the high school to pick up Katie. It was a mess....the principal of the elementary school has hated me since Jamie was in middle school, so she just sat across her desk glaring at me, telling me that I wasn't allowed to pick up Kendra because I wasn't on some "dismissal" list. I'm on the list to be called and to pick her up if she gets sick, but I can't pick her up without Jenny's authorization. Fine, Karmen.....call Jenny. Then she said it was late in the school year and she didn't know how long it might take to arrange a bus for Kendra - if she even could.

I lost it. I told her she WOULD arrange for a bus, or face a violation of the ADA. BY LAW, transportation to public school for kids with disabilities isn't an optional amenity, it's a requirement. And I reminded her that for 3 years Ken and I took Kendra to and from school, often with her highness standing right there in front of the car supervising school dismissal, and that I had done so the day before while she stood there talking to a teacher. All I could get was "I'll see if there's anything I can do." So I'm sitting in the parking lot waiting for Kendra, the resource officer is standing there in front of my car, joined by Karmen and the head of the school special ed services "chatting". Keisha brought Kendra out and when we went to the back of the car to load the wheelchair, she asked me why I was crying. Because I'm so doggone tired and so mad!! When I told her she said, "OH, no. As Kendra's aide, I'm telling you that she has to provide that bus, and right now so there's no interruption in services to Kendra. And she's talking to the man who will tell her so, just watch." I left the elementary school to go get Katie, and when I got the girls home Jenny was on the phone with Karmen. Jen said she was just as nice as she could be, the bus would pick Kendra up first thing in the morning, and Jenny had nothing to worry about.

Go Taz-Blooie..... Not only did you rip er a new one you gave her and extra in case that didn't work....

deb

 

[bobbi-j]

When Jenny takes her medication as prescribed, she can go years seizure free. When she does have them, they are bad...total Grand Mal seizures with no aura first. And if she has one, she will have a second one within 12 hours. Always. Every time. She is extremely dose sensitive - not enough and she'll seize, too much and she'll seize. She gets her meds through the Prescription Assistance Program. They dropped the ball and her refill hasn't come yet. She was scared that she'd run out, so she cut back by one pill to get her through until the new meds got here. Yeah, didn't work so well. And she didn't tell anyone that was what she was doing, so we weren't watching. We've told her before that if that happens, we'll pick up enough at the drug store to get her through, but it ain't cheap.

Yesterday the School Resource officer pulled her driver's license for 3 months, and told her he'd informed the highway patrol, the town cop, and Sheriff Blackburn that she is not to be driving. So now she has Kendra, a job, Katie, Kenny works, and she has no way to get them anywhere. She shouldn't be driving anyway, we've told her before that she is not only responsible for herself if she seized while driving, but for Katie and Kendra and everyone else on the road. But with no public transportation in our area, what are ya gonna do? We'll be gone most of September, October, and November. I did try to arrange for the special ed bus to pick Kendra up and then bring her home, but Katie and Jenny will still have to walk to the high school. Nothing else to do for it. When I went to pick up Kendra yesterday, the school resource officer was standing in front of the parking area of the school watching for Jenny, and then he followed me to the high school to pick up Katie. It was a mess....the principal of the elementary school has hated me since Jamie was in middle school, so she just sat across her desk glaring at me, telling me that I wasn't allowed to pick up Kendra because I wasn't on some "dismissal" list. I'm on the list to be called and to pick her up if she gets sick, but I can't pick her up without Jenny's authorization. Fine, Karmen.....call Jenny. Then she said it was late in the school year and she didn't know how long it might take to arrange a bus for Kendra - if she even could.

I lost it. I told her she WOULD arrange for a bus, or face a violation of the ADA. BY LAW, transportation to public school for kids with disabilities isn't an optional amenity, it's a requirement. And I reminded her that for 3 years Ken and I took Kendra to and from school, often with her highness standing right there in front of the car supervising school dismissal, and that I had done so the day before while she stood there talking to a teacher. All I could get was "I'll see if there's anything I can do." So I'm sitting in the parking lot waiting for Kendra, the resource officer is standing there in front of my car, joined by Karmen and the head of the school special ed services "chatting". Keisha brought Kendra out and when we went to the back of the car to load the wheelchair, she asked me why I was crying. Because I'm so doggone tired and so mad!! When I told her she said, "OH, no. As Kendra's aide, I'm telling you that she has to provide that bus, and right now so there's no interruption in services to Kendra. And she's talking to the man who will tell her so, just watch." I left the elementary school to go get Katie, and when I got the girls home Jenny was on the phone with Karmen. Jen said she was just as nice as she could be, the bus would pick Kendra up first thing in the morning, and Jenny had nothing to worry about.

I’m glad it worked out, but... That Karmen person needs a

 

[getaclue]

Can Katie ride a bike to, and from school? I don't understand why she couldn't be put on one of the bus routes. Maybe a classmate's parent that drives their kids to, and from school that either lives nearby, or pass by their place getting there could help out with her transportation. Offer them some gas money.

I understand Jenny's concerns, and how she didn't want burden anyone with the extra expense of her medication. Especially if she thought it would only be for a few days, and she's been lulled into a false sense of security, because everything's been fine for so long. Then again, she knows she's highly dosage sensitive, and there is a backup plan for these rare occasions. It's not just about her either. There is an impact on her husband, children, you. But all that is water under the bridge now. What's done is done. Hopefully she will be wiser, when there is a repeat of a mix up with her medication situation.

It does seem like they could send her at least 3 - 6 month's worth at a time, and a month before it runs out, she could make arrangements for another shipment. That way she would have a month's leeway to ensure she got her next shipment on time, and always have enough on hand.

 

[Blooie]

Can Katie ride a bike to, and from school? I don't understand why she couldn't be put on one of the bus routes. Maybe a classmate's parent that drives their kids to, and from school that either lives nearby, or pass by their place getting there could help out with her transportation. Offer them some gas money.

I understand Jenny's concerns, and how she didn't want burden anyone with the extra expense of her medication. Especially if she thought it would only be for a few days, and she's been lulled into a false sense of security, because everything's been fine for so long. Then again, she knows she's highly dosage sensitive, and there is a backup plan for these rare occasions. It's not just about her either. There is an impact on her husband, children, you. But all that is water under the bridge now. What's done is done. Hopefully she will be wiser, when there is a repeat of a mix up with her medication situation.

It does seem like they could send her at least 3 - 6 month's worth at a time, and a month before it runs out, she could make arrangements for another shipment. That way she would have a month's leeway to ensure she got her next shipment on time, and always have enough on hand.

No bus for Katie....and it wouldn’t hurt her to walk the 7 blocks to school one bit. She should have been doing that over the last several years of school anyway, but since Jenny works at Katie’s school it was just a given that she’d go with Mom. This year Jen’s hours were changed to 9:30, an hour and a half after Katie’s day starts.

As for the meds, that is exactly what she does - a three month supply and resubmit a month before she’s due. They continually drop the ball on her. This is the 4th time they’ve done it with the same result every time. They are always “so sorry” and “don’t know how that happened” so they’ll “get right on that.” <sigh>. Well, when we get back from Sheridan today they’re running into the Blooie Buzz Saw, starting with “The position Jenny is in is a direct result of you not doing your job” and ending with “Sandra Kitchen is hot running standby if anyone is harmed“. I’m done playing with this. Jen dropped her refill paperwork off on July 11.

 

[bobbi-j]

No bus for Katie....and it wouldn’t hurt her to walk the 7 blocks to school one bit. She should have been doing that over the last several years of school anyway, but since Jenny works at Katie’s school it was just a given that she’d go with Mom. This year Jen’s hours were changed to 9:30, an hour and a half after Katie’s day starts.

As for the meds, that is exactly what she does - a three month supply and resubmit a month before she’s due. They continually drop the ball on her. This is the 4th time they’ve done it with the same result every time. They are always “so sorry” and “don’t know how that happened” so they’ll “get right on that.” <sigh>. Well, when we get back from Sheridan today they’re running into the Blooie Buzz Saw, starting with “The position Jenny is in is a direct result of you not doing your job” and ending with “Sandra Kitchen is hot running standby if anyone is harmed“. I’m done playing with this. Jen dropped her refill paperwork off on July 11.

Is this place her only option for meds?

 

[Blooie]

Is this place her only option for meds?

Yes it is, unfortunately. We have a clinic/hospital/care center combined here and that’s the facility that the prescription assistance program uses. Without that program, Jenny and others who have to use it would be out in the cold. Jen drops her request off at the front desk of the clinic and their patient advocate is supposed to see to it that it and a copy of her pre-approval gets to the drug manufacturer. They send the med back, the clinic calls Jen for pick up, and she’s good for 3 months. In theory. It worked perfectly until the previous advocate retired and this new guy stepped in. Now we have this mess.

 

[bobbi-j]

Yes it is, unfortunately. We have a clinic/hospital/care center combined here and that’s the facility that the prescription assistance program uses. Without that program, Jenny and others who have to use it would be out in the cold. Jen drops her request off at the front desk of the clinic and their patient advocate is supposed to see to it that it and a copy of her pre-approval gets to the drug manufacturer. They send the med back, the clinic calls Jen for pick up, and she’s good for 3 months. In theory. It worked perfectly until the previous advocate retired and this new guy stepped in. Now we have this mess.

Are there any higher-ups you can report this to?