Again....it's been awhile and much has happened....
Adriann did great without dialysis her kidneys are functioning at over 30% and for her that's a miracle..they can hold their own that way for awhile.
She wanted to return to AZ in the worst way and I would say she was pining for it.
We had her stay until we thought she was more prepared to take over K.'s care full time!
Soooooooooooo to our sorrow and yet to our relief that she was well enough to go... I took her and K. back 2 weeks ago.
She's so happy, she looks good....we see her via webcam and get to visit K. that way who is still trying to figure out how we got in the computer and how to get us out! That child we miss every moment of everyday....she is an absolute delight...our animals miss her too!
But Adriann is back where she wants to be and it took her nearly a year to get there. Our fingers are crossed for her continuing improvement...she is still on an oral chemo for several more months, but she has gotten off some other medications and we hope she will gain more strenght and energy to keep up with the little one!!
Sunday, April 11, 2010
Sunday, November 8, 2009
Well it's been awhile since my last post and we have had some exciting developments...
Adriann's nephrologist decided to stop dialysis to see just exactly what her kidneys were capable of on their own with just a diuretic....so the experiment started...her creatinin was just above 4 at the start..it bounced up to 4.6 at one point but then dropped again down to 4 then 3.8 as the weeks passed and has been down to 3.5 no one expected her to be able to do this! But just last week at the 7 week mark they took the port out of her chest! Also the Wegener's anti-bodies are undetectable in her body! Another surprise. For someone who had it as severely as she did, they didn't expect the anti-bodies to be gone 5 months into recovery. They say when this happens the chance of recurrence is lessened.
Long term she will still need a kidney transplant at some point so we know dialysis will have to start up again but it would be amazing if it were 5 or 10 years down the road instead of the 18 months for a transplant that had been expected.
She is still weak, one day of taking care of her toddler and she's in bed for the next couple. Every time her stomach hurts she panics ....afraid that her kidneys are failing already. But she's happy too...it's kind of a roller-coaster. She has good days and bad. She's letting her hair grow back but still has 2 more rounds of Cytoxin infusion before she starts a daily oral medication. We aren't sure about the Rutuximab in Dec. but the Rheumatologist will let us know.
She says she almost feels like a girl again...if her hair comes back thicker than it is now and her face loses more puffiness she'll be happy!
Adriann's nephrologist decided to stop dialysis to see just exactly what her kidneys were capable of on their own with just a diuretic....so the experiment started...her creatinin was just above 4 at the start..it bounced up to 4.6 at one point but then dropped again down to 4 then 3.8 as the weeks passed and has been down to 3.5 no one expected her to be able to do this! But just last week at the 7 week mark they took the port out of her chest! Also the Wegener's anti-bodies are undetectable in her body! Another surprise. For someone who had it as severely as she did, they didn't expect the anti-bodies to be gone 5 months into recovery. They say when this happens the chance of recurrence is lessened.
Long term she will still need a kidney transplant at some point so we know dialysis will have to start up again but it would be amazing if it were 5 or 10 years down the road instead of the 18 months for a transplant that had been expected.
She is still weak, one day of taking care of her toddler and she's in bed for the next couple. Every time her stomach hurts she panics ....afraid that her kidneys are failing already. But she's happy too...it's kind of a roller-coaster. She has good days and bad. She's letting her hair grow back but still has 2 more rounds of Cytoxin infusion before she starts a daily oral medication. We aren't sure about the Rutuximab in Dec. but the Rheumatologist will let us know.
She says she almost feels like a girl again...if her hair comes back thicker than it is now and her face loses more puffiness she'll be happy!
Wednesday, August 26, 2009
Butte dialysis here we come!
Monday our driving miles get dramatically shortened A. starts in Butte!!! I can work part of 3 days a week afternoons but still need to find someone to watch Mac. for us...it'll happen!!! Oh gals that have been missing being waxed.....get ready to grin and bare it!!!!
Tuesday, August 25, 2009
Another day another dollar
Zippity doo da.... A.'s hospital bill is up to $700,000.00 and climbing how high will it go.....who knows!!! Go insurance!!! Fingers crossed and awaiting the outcome!
So here's the scoop: A benefit is planned for Adriann on Sept. 5th starting at noon in Washoe Park, Anaconda MT. A horseshoe tournament is the main event....2 member teams and cost per team is $30.00 There will also be a picnic and volleyball and a $5.00 donation is asked for that. Teams must be signed up by 8/27....no time to waste! You don't even have to play..just come join the fun there will also be a silent auction with fabulous items!!!! No kidding really fabulous!!! Call Alexis @560-1795 or Joan @ 560-0899
Today I actually got to go to work for a little while...wax on wax off a little facial hair tinted some brows and lashes.....gotta love it!!!! Nothing like ripping off someone elses hair to relax!!!!
So here's the scoop: A benefit is planned for Adriann on Sept. 5th starting at noon in Washoe Park, Anaconda MT. A horseshoe tournament is the main event....2 member teams and cost per team is $30.00 There will also be a picnic and volleyball and a $5.00 donation is asked for that. Teams must be signed up by 8/27....no time to waste! You don't even have to play..just come join the fun there will also be a silent auction with fabulous items!!!! No kidding really fabulous!!! Call Alexis @560-1795 or Joan @ 560-0899
Today I actually got to go to work for a little while...wax on wax off a little facial hair tinted some brows and lashes.....gotta love it!!!! Nothing like ripping off someone elses hair to relax!!!!
Sunday, August 23, 2009
A little night crawler.....
I fear my grandaughter is going to be like me...no need for an alarm clock... two nights waking up at the same time and a wonderful new habit is formed. So A. helped her out of bed tonight at her new wakeup time of 12:30 a.m. so she could come and get me to rock her again for awhile. So I've rocked her for a bit and then put her back in her bed and waallaa I have a little computer time..I wonder how many nights in a row this will go on. At least I've been going to bed the last few nights a little earlier in anticipation of this so I get a nap before she's ready to get up.
I actually think it's her tummy waking her...her food intake is changing to real stuff now and she doesn't chew it well so I think her digestion is the issue....I'll have to start her on some enzymes to help that process!!!
So I haven't mentioned yet the arrival of our newest granddaughter...
Our eldest son C. and his wife L. have a new little beauty who arrived just a couple weeks ago! We had hoped our house would have sold long before now...we had planned to be closer to them so we could help with babysitting...it'll happen when the time is right. Unbelieveable that we haven't gotten to see her but that first day!!! Chomping at the bit to get back but it's not easy with A.'s schedule I'm hoping that a friend can help out this week with a Missoula run so R. can go with Mac and me and we can enjoy a day of visiting and photos of the new family treasure!
Today I had a little sit-down chat with A. and told, yes told her that she has to move more, that she wouldn't get away with not exercising if she were in a rehab. center that it would be part of her daily schedule and conveniently we have a treadmill right downstairs so there's no reason she can't walk every day...starting slowly and building up! That walking will no doubt make her back hurt more for a bit as it gets used to the change but will feel better in the long run! That it has been easier for us not to say anything and thus avoid the dreaded 'stink eye' than confront the issue until now but it's too important to avoid...and went on to say that she'll have to start taking over the mom roll with Mac instead of having me do it all......I'm sure it wasn't what she wanted to hear and she'll have to mull it over...did she walk take a little walk today....noooooo but maybe tomorrow! She was out of bed a bit more today...of course I stripped her bed and washed the sheets that took awhile!
Well time to go peek and see if Mac is asleep...at least she's quiet about it!!!
Tah
I actually think it's her tummy waking her...her food intake is changing to real stuff now and she doesn't chew it well so I think her digestion is the issue....I'll have to start her on some enzymes to help that process!!!
So I haven't mentioned yet the arrival of our newest granddaughter...
Our eldest son C. and his wife L. have a new little beauty who arrived just a couple weeks ago! We had hoped our house would have sold long before now...we had planned to be closer to them so we could help with babysitting...it'll happen when the time is right. Unbelieveable that we haven't gotten to see her but that first day!!! Chomping at the bit to get back but it's not easy with A.'s schedule I'm hoping that a friend can help out this week with a Missoula run so R. can go with Mac and me and we can enjoy a day of visiting and photos of the new family treasure!
Today I had a little sit-down chat with A. and told, yes told her that she has to move more, that she wouldn't get away with not exercising if she were in a rehab. center that it would be part of her daily schedule and conveniently we have a treadmill right downstairs so there's no reason she can't walk every day...starting slowly and building up! That walking will no doubt make her back hurt more for a bit as it gets used to the change but will feel better in the long run! That it has been easier for us not to say anything and thus avoid the dreaded 'stink eye' than confront the issue until now but it's too important to avoid...and went on to say that she'll have to start taking over the mom roll with Mac instead of having me do it all......I'm sure it wasn't what she wanted to hear and she'll have to mull it over...did she walk take a little walk today....noooooo but maybe tomorrow! She was out of bed a bit more today...of course I stripped her bed and washed the sheets that took awhile!
Well time to go peek and see if Mac is asleep...at least she's quiet about it!!!
Tah
Recovery is a long slow road!
Adriann's blood sugar issues are improving as the prednisone is tapered down. She is down to 15 mg. a day now and only needs insulin about once a day instead of 4 times. She was really looking forward to that. I think she thought she'd really perk up with that change but she hasn't. She is tired of dialysis we drive 660 miles a week for her 3 sessions MWF we have to go to Missoula so the docs can closely monitor her. Since she can't have heparin, she was constantly clotting the machines..once or twice a session and the sometimes even 3. If that wasn't frustrating!!! Now she's on Coumadin (sp) and the sessions are finally going better, however it's still a really long day. On a regular dialysis day we leave our house around 11:00a.m. and get home around 7p.m. when we have another doc appointment or Coumadin clinic (which is once or twice a week) we have to leave around 9:00 am and still get home around 7. Her baby and I take her 2 days a week and 1 day R. takes her over so Mac and I can have a day at home, Mac needs a few days in a row without being stuck in the car...she's a trooper though! Her favorite movie is 'Bolt' and she watches it over and back unless she's napping! There's no more sitting with A. in dialysis for me...I have to keep Mac entertained for the day!
So needless to say A. is sick of all the traveling...on her off days, she usually stays in bed, encouraging her to get up and exercise is a trick. She sleeps, reads, and eats....repeats.... no energy. I suggest she gets up and walks a little outside with Mac while the weather is still good but it's a struggle. I've told her she has to be in good shape for the kidney transplant...I'm sure she'll need one...her urine output is decreasing. Maybe a re-adjustment of some of the meds will be helpful. She's never been one to have a ton of energy but she needs to try a little harder for her daughter in my book....she's going to have to be the mom again one of these days. I use my YL oils on her, but don't see much of an attitude difference....(I do see very swift improvement using them when she's feeling a sniffle coming on though...I can nip that right in the bud with the oils applied topically.)
I'm sure it's frustrating for her to watch Mac come to me for everything but I'm where the action is and she's a busy girl!!
The doc hopes that she can start dialysis at a center just 25 miles away from us in the next month or so....my fingers are crossed! Then I could work a few hours in the salon on those days!
I'm freaking out over my bills and not working. I'm up a lot a night stewing on how to earn money! I'll have to either take Mac to work with me or find someone to watch her for a few hours. I can't do a daycare because A. is still on chemo and has a low white cell count and we can't risk her catching something....with all the bugs floating around, daycare is a prime spot for little ones to spread illness and we can't risk Mac being exposed and bringing it home to A. the oils do great but we don't want to have more exposure than we have now...We use Thieves Spray on grocery carts etc. but I can't keep Mac in a Thieves bubble so less exposure is better! My quandry....how to earn money through this....I'm trying to get hired as A. home health worker but don't know if I can...am waiting for an answer on that.
So....my niece and I are going to publish a book on using essential oils for animals....I've had most of it ready for several years and now she and I are putting it together for real. Hopefully it'll sell!
Then we've pulled out one of my children's stories and have dusted it off and will see about publishing that one. My niece did her own book 'Step by Step Guide to Teaching a Miniature Horse to Drive' Scroll down to 'my favorites' you can click on it....she did fantastic with that book so she's taking on my books with me. It would be awesome for her to get her own little publishing place going!
Bills can either drown you or put you into creative thinking mode...I vote for creative thinking. The wait is still scary but I keep believing it's all going to work out.
That's all for tonight folks.
So needless to say A. is sick of all the traveling...on her off days, she usually stays in bed, encouraging her to get up and exercise is a trick. She sleeps, reads, and eats....repeats.... no energy. I suggest she gets up and walks a little outside with Mac while the weather is still good but it's a struggle. I've told her she has to be in good shape for the kidney transplant...I'm sure she'll need one...her urine output is decreasing. Maybe a re-adjustment of some of the meds will be helpful. She's never been one to have a ton of energy but she needs to try a little harder for her daughter in my book....she's going to have to be the mom again one of these days. I use my YL oils on her, but don't see much of an attitude difference....(I do see very swift improvement using them when she's feeling a sniffle coming on though...I can nip that right in the bud with the oils applied topically.)
I'm sure it's frustrating for her to watch Mac come to me for everything but I'm where the action is and she's a busy girl!!
The doc hopes that she can start dialysis at a center just 25 miles away from us in the next month or so....my fingers are crossed! Then I could work a few hours in the salon on those days!
I'm freaking out over my bills and not working. I'm up a lot a night stewing on how to earn money! I'll have to either take Mac to work with me or find someone to watch her for a few hours. I can't do a daycare because A. is still on chemo and has a low white cell count and we can't risk her catching something....with all the bugs floating around, daycare is a prime spot for little ones to spread illness and we can't risk Mac being exposed and bringing it home to A. the oils do great but we don't want to have more exposure than we have now...We use Thieves Spray on grocery carts etc. but I can't keep Mac in a Thieves bubble so less exposure is better! My quandry....how to earn money through this....I'm trying to get hired as A. home health worker but don't know if I can...am waiting for an answer on that.
So....my niece and I are going to publish a book on using essential oils for animals....I've had most of it ready for several years and now she and I are putting it together for real. Hopefully it'll sell!
Then we've pulled out one of my children's stories and have dusted it off and will see about publishing that one. My niece did her own book 'Step by Step Guide to Teaching a Miniature Horse to Drive' Scroll down to 'my favorites' you can click on it....she did fantastic with that book so she's taking on my books with me. It would be awesome for her to get her own little publishing place going!
Bills can either drown you or put you into creative thinking mode...I vote for creative thinking. The wait is still scary but I keep believing it's all going to work out.
That's all for tonight folks.
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