I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: lola on August 15, 2007, 01:10:17 PM
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Well we just found out dani's hemoglobin is 11.2 :yahoo; that means the Iron pills are working I was so worried she to would have to start shot's like Otto and we didn't want to have our 5 yr old go through that. Since she's been off the high blood pressure meds she's perked up and her mood swings have settled Thank God!!!! They love her at the lab because she has to watch everything and loves to see her blood fill all the tubes, plus when there done she wants to do it again so she get's more stickers, of course they give her as many as she want because she's just so darn cute.....
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Great news, she sounds like a good sport. :grouphug;
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Great news Dani (and Lola) thank you for keeping us updated :2thumbsup;
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good, I'm glad she doesn't have to do shots.
glad she handles the blood tests so well.
Many of us should have lessons from her. lol
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Yay!!! That's good news!!!! :2thumbsup; And soo cute that she likes to watch it!! Yuck!!! Good for her!!! I'm glad for you that her mood swings have stablized too!
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Great news Lola, Otto and Dani!! :cuddle;
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That's great news Amy. :cuddle;
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Yay!
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:) She sounds like a great kid!
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Well Dani comes off Iron pills on the 5th and I'm starting to freak, they want to see if she can maintain her hemoglobin on her own she's at 11.2. She has Neph appt in Dec and they'll check her then unless she starts getting really tired again then they'll check sooner. Is it bad that I'm pissed there doing this to her? I mean I know we mess with Otto's meds but it's diffrent he's an adult I can't stand that we are doing this to my baby. :banghead; :banghead; So say a pray she can maintain on her own.
EDITED: Fixed :banghead; icon error - Sluff/ Admin
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Hopefully it will stay good! She sounds like a little Princess! :)
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I sure hope and pray that those docs know what they are doing (and i am sure they do) And yes Lola, you have every right to feel how you are feeling, and remember, ask ALOT of questions and dont you leave until you get ALOT of answers. My prayers are with you all :grouphug;
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I know you will do your very best to protect your daughter but unfortunately some things are out of our control. I hope things will look a little brighter for Dani, it is hard when this crap attacks a child but all we can do is offer positive thoughts and prayer. Here's to good news at the next Dr's visit. :beer1;
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Dani's hemoglobin is up to :yahoo; she'll stop her Iron on Friday and see if she can maintain it on her own
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:yahoo; Best news i have heard all day Lola, thanks for letting us know :2thumbsup;
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Well Dr just called and Dani will NOT stop her iron pill. One test they were waiting for just came back and even though it's in "normal" range it's on the low side and he's afraid she'll go down hill if we stop. Not sure how I feel :banghead; I'm glad they are watching her so well but sad she has to go through this.
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Awww Lola, i am sorry Dani has to go through this too, hopefully they will fix whatever it is that needs fixing so that way she will grow up and not have to go through any of this crap :thumbdown; My thoughts and prayers are with you all my friend :cuddle;
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I'm sorry to hear that Lola. I hope it can fix it self up soon. Dani is definitely too young to be going through all of this. :(
Thinking of you all.
:cuddle;
Amanda
xxoo
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Well we go see the Neph on the 18th and Dani has been on Iron pills since July and it's help, But I'm wondering if it's best to keep her on it. She gets a "icky" tummy and some days her poop(sorry) is like rocks other days it's runny(sorry), this is why Otto stopped taking them and just gets his Arsenip shot every 4 weeks and has not had any problems. Now I'm wondering if this would be best for Dani also? I just want what is best for her and don't know what that is, have any of you had problems with Iron pills and chosen to stop and just do shot's? ??? Thanks for your help
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I used to take the iron suppliments but they are not absorbed as well. I just finished 5 weekly visits and got 200 mg of the iv type (sorry, forgot the name) and my labs finally came back positve. Hope that helps.
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Awww Lola, i am sorry Dani has to go through this too, hopefully they will fix whatever it is that needs fixing so that way she will grow up and not have to go through any of this crap :thumbdown; My thoughts and prayers are with you all my friend :cuddle;
Thanks but they can't fix Alports :banghead; so I will be going through it with her too :banghead; :banghead;
EDITED: Fixed smiley error-kitkatz,moderator
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I used to take the iron suppliments but they are not absorbed as well.
The same for me. I started taking Arenesp about two years before dialysis and continue to. I also have an iron infusion every six months or so.
Ask what are the other options for Dani. I do the injections myself and its pretty easy. I am sure you would have no trouble doing them. The iron pills are annoying. :cuddle;
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Dani is such a trooper. I had arensp, IV iron and of course those nasty pills. I bet she handles this better than all of us so called "Big People". I read some where that chewing gum with zylitol (not sure the spelling) will help soften hard stools from iron. It helped me some.
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Dani is such a trooper. I had arensp, IV iron and of course those nasty pills. I bet she handles this better than all of us so called "Big People". I read some where that chewing gum with zylitol (not sure the spelling) will help soften hard stools from iron. It helped me some.
She's amazing, they fight over here in the lab because #1 she's so cute #2 she is so good about her blood draws. I really can't give her anything since sometimes she has hard stools other times loose. I just hope we can try something diffrent.
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Dani just had labs done so keep your fingers crossed, we see her Neph nest week. There was another little boy waiting and she asked the mom if he wanted to watch her since she's a pro, She's so cute!!!!
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:2thumbsup; She's a great kid.
I hope labs are good!
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Dani's hemoglobin is 11.7 same as Otto's kinda funny. Talked to the Anemia clinic about Otto and then told her about Dani's issues with the Iron pill and she gave me the name of another pill to ask about because she's not sure if they use it on kids. Will wait till Tuesday to get all other results when we see the Neph. Also when do they list kids? do they wait till they are at stage 4 or do they list them sooner since there kids? I'm planning on asking when we go in next week but it seems like you guys know so much thought I'd ask.
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Well we just got home from the Dr and Dani is on the couch sleeping. She gets to stop the Iron pills and we will do counts in 2 months or sooner if need be and decide what is the best treatment then. Dani goes back in June and then he said as much as I'm against it she will need to start BP meds again, we have done this 2x's befor to try to lower protein in urine and she did not do well but he said her BP is slowly creeping up and we need to keep from any other problems :banghead;
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I am so sorry to hear that you didnt get good news at the damn docs office. Hang in there girlfriend, remember, we are here for you always. One day at a time my friend. Love to you all... :grouphug;
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I don't know much about labs but I do know the importance of keeping the blood pressure under control. I hope it helps and maybe she can get off them someday. You have my Prayers for your entire family,Lola.
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She is in my prayers and I hope the blood pressure meds work and high blood pressure is a bad bad thing. :grouphug;
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I finally brought Dani in tonight because she has been just a little >:D the last week and now we know why her Hemoglobin has dropped to 10.8 but now because I waited we have to wait till Monday to see what we do now :banghead; :banghead;
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:cuddle; It's hard to tell when kids are just being kids or if it's something else.
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Today Dani had a Iron Saturation Index test???? Now we have to wait for those results to find out what we are going to do for her. I hate waiting she has not slept thru the night in weeks because of leg cramps :banghead; :banghead;
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Sweet Dani. I wish I could take her pain away. Hopefully the test will tell how her body is handling iron. I can't complain when I think about the kids dealing with health issues.
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oh..boy... you have your hands full don't you Lola. Please know my thoughts are with you and your family constantly. Don't forget to take care of you. :grouphug;
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Well the test are in and Dani is back on Iron pills. The Dr said it's not her diet it's due to her kidney's not working properly.( NO S@#$ SHERLOCK) I've only said this for a year now!!!!! Hopefully this time around her stomach does better.
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I feel sorry for kids when they have to take meds. :grouphug;
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But thank God for the meds.
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I don't understand getting iron pills if the kidneys aren't working properly??
I guess it seems like you'd need epo and iron to help anemia? But maybe that's only with severe kidney failure.
(I never could get it straight.) Anyway here's more info http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/
They say: Many people with kidney disease need both EPO and iron supplements to raise their Hct to a satisfactory level. If your iron levels are too low, EPO won't help and you'll continue to experience the effects of anemia. You may be able to take an iron pill, but many studies show that iron pills don't work as well in people with kidney failure as iron given intravenously.
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While on dailysis, I was on Epo, but still sometimes had to get Iron infusions because I was still too anemic.
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Well Dani just had her appt and her Hemo 11.5 :yahoo; she's staying on Iron since she needs it, they also ran some other test and will call in a few days. Her Neph is going to treat her aggressively as a boy with Alports so he's going to decide in a few days what med he'll start her on to try to save her kidney function for as long as possible. He calls Dani his little fluke since she shouldn't have anemia yet since she still has good kidney function and she shouldn't be suffering from Alports, but like he also said she's a Machado and they all like to be a little diffrent.
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:2thumbsup; Good news! Sounds like your doctor is on top of everything too - that's great!
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That's great news Lola. I too hope that Dani's kidney function will hang in there for a very long time. :grouphug;
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We just heard from the Dr and one of the #'s they look at besides protein to creatine ratio but it has to do with protein in the urine, they want the # to be under 20 and Dani's is 109 :banghead; so he's starting her on BP meds and we'll see if Demon child comes back. We need to get that # way down since it will just speed up her kidney failure and they say BP meds can help lower protein levels in urine :bow;
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Bummer... BP is pretty important though. :grouphug;
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Well we just heard about Dani's labs from Thursday, Hemoglobin is 12.2 :bandance; :bandance; But he is upping her BP meds because her protein level is still WAY to high in her urine and that's what is speeding up damage to her kidneys so hopefully this will help. I'm just freaked because this med makes the >:D come out of her.
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How's Dani?
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She's good Thanks, she has joined hopekids and has found there ARE other kids who have to take meds and have labs just like her. She has only been on the new dose for 3 days so if the >:D is to come back I'm thinking we will see her in the next week or two.
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Kids adapt to things in an amazing way. But it helps to have a mom like you lola! :cuddle;
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Lola you are a gem! You need to get to Vegas this year.
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Lola you are a gem! You need to get to Vegas this year.
I WISH ,but I'm doing the NKF walk on the 11th so I'll be thinking of my chica Susie and all my IHD Family :grouphug;
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Lola you are a gem! You need to get to Vegas this year.
I WISH ,but I'm doing the NKF walk on the 11th so I'll be thinking of my chica Susie and all my IHD Family :grouphug;
:thumbup; You go girl!
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We are starting to see the return of the >:D Dani also has a "virus"? we are waiting a few more days to see for sure and praying this is not the meds as if it is we really don't have any options. :bow;
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HI Lola
I just read all three pages of your thread and I must say you are one amazing woman!! What a lucky little girl your Dani is to have a mom like you and I just wanted to know I'm pulling for her too. It must be terribly hard to have a child who has sick kidneys, my heart goes out to you!!
Marley
:guitar:
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Well >:D Dani is to much for this Mama so yesterday her Dr decided to stop her BP meds. We may try something else this summer but we can't have her like this during school.
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:grouphug;
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Maybe it's a reaction to what your family has been through with Otto, children express themselves differently. I hope this passes and that it is not the meds. :grouphug;
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:grouphug;
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Maybe it's a reaction to what your family has been through with Otto, children express themselves differently. I hope this passes and that it is not the meds. :grouphug;
It started b-4 everything with Otto, since things with Otto she just needs to be attached to me. I wish she wouldn't have these reactions but for whatever reason every time we have tried it we get the same >:D
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Amy,
Hang in there, my friend. You have been through the ringer. I am so impressed by your strength.
xoxo
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sending a :cuddle; for you Amy.
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Just you wait until she becomes a teenager and goes through puberty!
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Well Dani was started on Cozaar and is doing GREAT no more >:D Dani. They just got her labs back and her #'s look AWESOME :bandance; the Dr said it's not what he'd call victory but I do. Some kids on this become immune but we will keep her on it and keep our fingers crossed that it keeps her at stage 2 for a VERY long time. Today she also was told only 2 more weeks in a cast :bandance; oh for those of you who didn't know she fell ice skating and broke her leg.
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Good to hear the meds are working!
Wow - that's a long time in a cast - it must be tough with showers, snow, school!
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Lola i also had bad spells on certain BP meds. Mood swings, ups downs ect ect.
I am also on Cozaar and i can see/feel the differnce but karen even more so. So I am glad Dani is doing well on them.
Also glad she is getting out of the cast soon :clap;
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Sending you loads of {{{hugs}}}. I am really happy to hear that Dani is doing well.
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:grouphug;
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Dani's cast is off and besides a really good limp she is running around like any other 6 year old :bandance; She will have repeat labs in April and :bow; :bow; that her labs continue to look good.
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Glad to hear Dani is cast free.
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Yea, the cast is off :yahoo; Small victories are wonderful. You are an amazing Mom and Wife!!
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:2thumbsup; :2thumbsup;
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Celebrating the small victories with you... :cuddle;
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:stressed; well we just got Dani's labs and they are the WORST ever :stressed; of course me I asked a millon ?s as to what I maybe fed her or had her drink that would make her levels jump and he said nothing so OK then lets increase her meds but he wants to 1st do another 24 urine to see if maybe somehow :bow; last week labs are wrong and then we will decide what the next step is. Dani has been stable at the high end of stage 2 but this last set of labs put her at the low end of 3 almost 4 :stressed; :stressed; :puke; I soooooo don't need this, I need to get Otto better and a new kidney. WTF!!!!!!
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:grouphug;
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Lola - I am really sorry to hear this news. I hope the re-test offers better numbers. :grouphug;
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Lola, mother to mother, my heart is breaking for you. Nothing compares to worrying about your child, especially since you know what Dani faces. I'll keep praying that Otto gets his kidney quickly (we believe in miracles) and that Dani's numbers will look much better with the re-test. :cuddle; :cuddle; :cuddle;
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Lola, I'm so very sorry that you've had this news. :grouphug;
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I hope the next blood tests show better results! I'll keep little Dani in my thoughts! :cuddle;
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:grouphug; Fingers crossed Dani's numbers are better next test. Thinking of you Amy. :cuddle;
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Thinking of you Amy with fingers crossed :cuddle;
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Oh man, this sucks... I hope all this turns around Lola
Thinking of you
Kim :grouphug;
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:cuddle; lola, I am so sorry to hear the news about Dani. So the 24 hour and we will all pray that the labs where not done correctly. Please keep us posted. How is Otto doing? How are you? :cuddle;
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Prayers for everyone! :grouphug; :grouphug;
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Thanks for all the Love guys, what would I do with out U. Dani will start her 24 hr collection this am so I look like a pretzel crossing everything praying this comes back better. Speaking of pretzels I need a Icon since I do so much crossing of body parts.
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I'm crossing my fingers for her too and saying a little prayer. I hope the results come back better!
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Here is an image you might use for your avatar.
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Well the "orange" jug has been dropped off, it's gonna be a loooooooong 24hrs till I hear something.
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:cuddle;
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:bandance; :bandance; :bandance; last weeks labs were a fluke!!!! Dani's labs are a little high but normal for her. Life is good :flower; Thanks for the prayers and hugs xoxoxxo :cuddle; :cuddle; :cuddle;
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lola :yahoo; I'm so happy to read this. :cuddle;
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:bandance; :cuddle;
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Lola, You give me SO much courage!! Taking care of 2 people with kidney problems! You have such strength, and knowing that you are able to continue your strength and help your family, gives me the courage and strength to really keep it up for my husband.
I will keep your family in my thoughts and prayers!!
Thank you, Much Aloha
Tiffany Jean
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:bandance; phew! great news
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Well we have just increased Dani's meds, kinda scared as she is small and this dose my cause problems(lightheaded or she may pass out). If she does well then we will do another 24 hr in October, if she can't tolerate it we may have come to a point where there's nothing else to do :banghead;
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:grouphug; :grouphug; :grouphug;
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How is Dani doing lola - is the dose giving her any trouble?
:grouphug;
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It's been 1 week now and so far we are not seeing anything, I have learned not to get my hopes up to high but I can't help but :bandance; :bandance; :bandance; :bandance;. If she continues to do well we will do another 24 on October.
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:2thumbsup; Great, here's hoping for good results!
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:cuddle; thinking of you and sending you and the rest of your bunch some hugs :cuddle;