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| JayJay daughter in hospital; 6 yr old Amber in hospital | |
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| Tweet Topic Started: Sep 11 2006, 02:15 PM (5,198 Views) | |
| Jacaranda | Dec 12 2006, 12:37 AM Post #301 |
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Janet: It's so easy to get down about this terrible mess...you all are doing everything valiantly, you and your husband learning to catherize Amber, and Amber having to go through surgery and the catheter and back to school. You're all heroes in my book. I'm sorry to hear she has another UTI but these bugs are so awful to erdicate. What antibiotic is she on -- does she need to be switched possibly? Maybe the doctors have something else they need to do. If not, remember we all think you're brave and that eventually this time should only be a bad memory. I hope that the coming days are more easy and that your Christmas is wonderful. Lisa |
![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| jayjay | Dec 13 2006, 05:23 AM Post #302 |
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Aw, gosh, Lisa... thanks so much for your kind words and encouragement. I hope you don't mind I called you Lisa...
She's been on so many different antibiotics... hasn't been off one since JUNE! Different antibiotics for different bacteria. She's been on a maintenance one since her surgery called furadantin, but just 1 tsp every night. With this new infection they've put her on something called bactrin. Not that it matters much but at least this one was only $15 compared to the others which had copays of $40-$60. Yes, one day we will hopefully look back on this whole nightmare and realize that it could have been worse. I'm just SO WORRIED about her! Eventually these antibiotics probably won't work, and one day she might need them for something else. I'm just worried, period, and I feel helpless. |
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| jayjay | Dec 13 2006, 05:27 AM Post #303 |
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Yeah, we've done the cranberry juice thing as well... doesn't seem to help much. Urologist keeps saying lots of water, and she's doing that too! Nothing seems to help. Thanks for the
I needed that.
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| jayjay | Dec 13 2006, 05:29 AM Post #304 |
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Thanks Tassy... I'm finally learning your names! Me too... as I mentioned, I just feel so helpless.
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| jayjay | Dec 13 2006, 05:31 AM Post #305 |
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Thanks so much Rose... I think I'm spoiling her rotten with all the Christmas presents I've bought her already! :lol: |
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| BeatleBarb | Dec 13 2006, 05:31 AM Post #306 |
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Yikes, JayJay...really sorry about that. What about probiotics....the good bacteria. I take some supplements because I had been sick for quite a while and I'm thinking they have helped. I had 4 UTIs in less than a year along with diverticulitis. You know, you would have to consume mega quantities of cranberry juice to get the needed benefit - same thing with yogurt. Have you consulted with a dietician? Poor little thing and yourself! |
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| Deleted User | Dec 13 2006, 05:34 AM Post #307 |
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F*CK F*CK F*CK F*CK F*CK F*CK F*CK!!!!!!!!! Dammit, why can't this girl just get better?!?!?! :angry: Amber! You hang in there sweetpea! |
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| jayjay | Dec 13 2006, 05:37 AM Post #308 |
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You're a jewel, Chad... It is Chad isn't it? You've been so sweet, encouraging and have taken the time to keep up with me and my daughter since page 1, and you didn't even know us. You're a sweetheart. Thank you from the bottom of my heart. I keep saying my prayers to our good Lord that she'll overcome this soon. Your posts help me a lot. |
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| theonlyfab4fan | Dec 13 2006, 05:39 AM Post #309 |
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I AM THE BIGGEST JOHN FAN!
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This makes me incredibley sad. Bless her sweet little heart. Jay Jay I know you and your Drs. are doing all you can for her and she is a tough little cookie like her mom. Have you thought about getting in touch with the Childrens Hospital in Chapel Hill NC? They have one of the top Pediatric Urinary Units in the country. I owe my youngest sons, who will soon celebrate his 21st birthday, life to them. |
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You say you want to save humanity but it`s people that you just can`t stand John came to me in a dream and this is what he said. "I had a vision of a man on a flaming pie, and he told me that Betsy with a B not Lisa with a L is the biggest fan of mine". John trumps 'the boss' ! I WAS ROBBED BY THAT DEVIL WOMAN | |
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| jayjay | Dec 13 2006, 05:40 AM Post #310 |
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No Beatlebarb... you're the first one that's mentioned a dietician. Yeah, they've told me about the good bacteria; apparently whatever she has now (they never told me what this one was, but she hadn't had it before) is not good and the dr. said they can't ignore the colonies that are growing. I'll have to check into your suggestions... thank you! |
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| jayjay | Dec 13 2006, 05:45 AM Post #311 |
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Wow, that's great they saved your son! We're dealing with the head Urologist at Miami Children's Hospital, which is also world-reknown. Both the surgeon and the Urologist are out of MCH and are colaborating (I'm so tired, not sure if that's the right word) with each other on her condition. Maybe if this continues much longer I'll ask the pediatrican and surgeon about Chapel Hill and see what they say. The thing is, we know the urology problems are stemming from the spinal cord issue so it's not totally a urology issue, if that makes sense. :wacko: |
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| Deleted User | Dec 13 2006, 05:50 AM Post #312 |
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*Chad strokes Amber's hair* Yes hon, your mommy spelled "collaborating" wrong, but who cares? You get some sleep now, OK?
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| Jacaranda | Dec 13 2006, 02:32 PM Post #313 |
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CHAD! Leave Janet alone she's entitled to spelling mistakes! Besides you never noticed that Betsy mispelled "incredibley" so HAH! :lol: Janet please call me Lisa everyone does...especially since I signed my name Lisa twice in the post. And please also, spoil Amber with plenty of Christmas presents. She deserves them.Here's a little bit of cuteness for Amber.
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![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| Deleted User | Dec 13 2006, 02:48 PM Post #314 |
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:lol:
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| jayjay | Dec 13 2006, 03:06 PM Post #315 |
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I love you guys. Really... |
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| jayjay | Dec 13 2006, 03:08 PM Post #316 |
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Well, I just got a nice surprise.... Amber's got the flu (on top of everything else!) so she was out of school yesterday and she's out today. Well, her teacher just called me on my cell phone to make sure she's ok. She wanted to make sure she's not having other complications from the surgery and urine issues. Now that was nice of her.... I guess I need to forgive her for the previous comment. <_< |
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| jayjay | Dec 17 2006, 06:40 AM Post #317 |
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Never thought I'd be happy about this, but Amber wet her bed last night! :woot: Of couse she didn't realize she was doing it, but it seems to be a step in the right direction... I think. Or perhaps it's just because of the current UTI... :hmm: |
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| Deleted User | Dec 17 2006, 06:57 AM Post #318 |
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Hopefully she's moving in the right direction, Janet!! |
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| maccascruff | Dec 17 2006, 11:39 PM Post #319 |
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Sing the Changes
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Amber has another UTI? And for the entire family-- and Merry Christmas
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| jayjay | Dec 18 2006, 05:07 AM Post #320 |
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Unfortunatley... yes. But you know what............ it could be worse! I'm really trying to be up right now. |
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| LITTLE LAURA | Dec 21 2006, 03:14 PM Post #321 |
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Or St. Jude's? They never turn away a sick child. And children are ALL they treat! It was founded, (& originally funded), by (the late) Danny Thomas. Now his daughter, Marlo, oversees the fund-raising part. Here's an Xmas card for ya both: ![]() [same old, same old, as far as I'm concerned, btw] |
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| jayjay | Dec 21 2006, 08:53 PM Post #322 |
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I support St. Jude's occassionally. No, I haven't really thought about leaving Miami for the urinary issues. I only looked nationwide for the spinal surgery, knowing that was the root of the problem. I know I'm being really selfish here, but I'm soooo down and depressed right now. She's had diarrhea since Sunday, and I'm having to leave work to go to her school to change her pull-up 2-3 times a day... ON TOP of the catheters. I'm feeling very overwhelmed, depressed, and like if one more thing happens, I'll have a nervous breakdown... which nearly happened yesterday. I realized when I dropped her off that I forgot to give her her medicine. So, I called my boss, told him I'd be in shortly, and started heading back home to get her antibiotic. Trying to avoid a specific traffic light, I took a different route than I typically take, and I suppose my mind was wondering, and I didn't realize I was in a school zone (I still haven't figured out where in the hell the SCHOOL is, I still haven't seen one even after going by there today!). Well, out of nowhere, this big ass cop steps out in the road and pulls me over. Needless to say, I got a speeding ticket. After giving him my DL and reg., I just broke down, crying my eyes out... I never let him hear me, but when he came back with the ticket, it was obvious as I was shaking like a leaf, and he hands me the ticket and says '28 in a 15' and I answered, barely able to speak I was crying and shaking so bac 'officer, if you knew realized what I've been through over the past few weeks, you might be a little understanding' and he looks me right in the eye and says 'sign on the X'. So I did... I AM READY TO GO IN A CORNER AND CRY.... and I'm usually so upbeat, especially during the holidays... not this year. AND the pediatrician called today because I NEED HELP at school and we're working on that... but she made a statement that leads me to believe that there is a possibility that this condition may not go away... OMG, please my friends, keep praying for my baby... I love her so much... she doesn't deserve this... she's such a sweetie...
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| Deleted User | Dec 21 2006, 09:18 PM Post #323 |
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Poor thing! I wish I could help some way! I hate this for you and Amber.
Of course I'm still saying prayers for you and her. I hope this gets better soon for you guys.
And f*ck that cop. Take that ticket to the judge and explain what's going on. No human that has a heart will make you pay that fine. My heart is breaking for you and your baby, Janet.
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| foolonthehill | Dec 21 2006, 09:26 PM Post #324 |
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Oh my, I truly hope this all gets better
No child deserves this at all.Bless you and your daughter (and your whole family) I can't belive that police officer :angry:
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all of those pictures on the wall... what makes them fall? ![]() sminking.deviantart.com | |
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| Sandra | Dec 21 2006, 10:21 PM Post #325 |
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Certainly will do that Janet. She is a wee sweetie alright. I hope things get better for your family really soon, you've all had such a difficult time. I hope Christmas brings you some joy and fun and lets you all forget about this for a little while.
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| Rose | Dec 21 2006, 10:27 PM Post #326 |
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Well, here's another clue for you all, the Walrus was Paul...
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I'm so sorry for all that you and your beautiful daughter are going through...you both are so brave. I pray that this Christmas season will be able to give you hope and strength to get through this terrible time. |
![]() "I'm in awe of McCartney. He's about the only one that I am in awe of. He can do it all. And he's never let up... He's just so damn effortless." ~ Bob Dylan | |
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| Jacaranda | Dec 22 2006, 01:10 AM Post #327 |
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Oh my gosh, Janet , you poor dear. If anyone needs a hug now, you do. Of course you feel depressed. You have every right to be. Anyone would. You are not being selfish, you are being human. You have so much stress to deal with, and I know as the mom of a little one the same age, it is so hard when they have to deal with anything tough, let alone something as difficult as this illness Amber is going through.Remember it is okay to feel bad -- and many people do feel down at the holidays because even though they are positive they can be stressful for lots of reasons. And if you really feel depressed, see your own physician and ask for meds to help you sleep if you need them or antidepressants to help you through. It is okay, believe me to get the help you need. As I was once told by a very good therapist, you cannot help anyone else unless you take care of yourself. I went through a bad patch a few years ago when my mom became very ill, but once I got to a therapist, it was amazing how much I was helped even though the situation did not change. But whatever you decide, please take care of yourself too. And I hope that your Christmas and New Years are joyful, both for you and your family. |
![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| MaccasGirl | Dec 22 2006, 01:21 AM Post #328 |
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I feel so bad for all you're going through right now, Janet. I am so sorry. The stress you are feeling must be overwhelming for you~trying to take care of everything plus working a job can be too much for anyone to take. I hope that Amber gets better and that things improve for all of you. Hope you have a nice Christmas and all your problems go away.
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And in the end...The love you take..Is equal to the love you make. | |
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| maccascruff | Dec 22 2006, 01:27 AM Post #329 |
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Sing the Changes
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Janet, I'm so sorry that so many things are going wrong. I do hope you can find a solution for Amber's problems soon. Here's another hug And give Amber lots of hugs.I'd go to court and tell the judge what all is happening to you. |
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| iscreamer1 | Dec 22 2006, 02:20 AM Post #330 |
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Janet, I feel ya girl. Just know that things will get better. I know it's hard to see that now but it will. The ticket is just the icing on the cake. Been there! Try to stay positive for the family and be sure to take care of yourself. Make sure you get some rest and a break if you can. Hope hubby is helping. Enjoy Christmas!! Order in!! Take Care, Irene |
Laughter is the shortest distance between two people - Victor Borge | |
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| tagandolfo | Dec 22 2006, 03:33 AM Post #331 |
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Janet, I feel so bad for you and Amber and all the family. It seems like you can't get a break. I hope you get help with the school. Has anyone there brought up 504 accommodations and supports for Amber? These are related to the American with Disabilities Acts and apply to situations such as this where you should be able to access temporary help while Amber is going through all this. If nothing else it will help you so you aren't running yourself ragged. I don't know if this information will help or not. Try to enjoy the holiday if you can. If you just don't feel like it, just pile up in the house and watch movies and eat candy. |
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| LITTLE LAURA | Dec 22 2006, 08:15 AM Post #332 |
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I'd contest the ticket too. I presume you can where you are. I'd say talk to the Staff-Sargent at the Police station too, but I seem to remember something about once a ticket's written, even the cop who issued it can't take it back. Something about guarding against bribery, or dodging a well-deserved one. Which of course, YOURS WASN'T. Next time, if there is a next time, BAWL YOUR EYES OUT GIRL--IN FRONT OF HIM. I got ticketed that way too when I was still driving. They always seem to get the one who ordinarily never does "speed", don't they! :rolleyes: I believe St. Judes is in Florida. Or at least a branch. I DO know they are always at the forefront of break-thru procedures, so they just may know something new. I'll check that for ya. |
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| jayjay | Dec 22 2006, 02:14 PM Post #333 |
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Yeah, I didn't want to advertise this, however, I had to go and see my doctor. I am already a very hyper person filled to the rim with energy, and all the stress of her illness just put me over the edge. I was bitching at my children and the hubby, and no one could do anything quickly enough for me. I saw the signs and saw my doctor. He did give me something that is helping a lot! What concerns me is that I don't want to live on pills for the rest of my life.
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| MarthamyDear | Dec 22 2006, 02:19 PM Post #334 |
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Janet, you are SO due for a break!!! How is Amber today.......is her diarrhea better?? Does she like to eat yogurt??? It would definately help her in this case......................that cop had no business giving you that ticket. You should have told him what exactly you had been thru, and I bet he had second thoughts about ticketing you :angry: And I agree with the others, try to get as much help as possible and YOU need to be well too............us Mom's try to do it all and it's easy to become overwelmed, especially at this time of the year........my thoughts and prayers go out to you all
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| And it really doesn't matter if I'm wrong, I'm right.......Where I belong I'm right..........Where I belong. | |
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| jayjay | Dec 22 2006, 02:22 PM Post #335 |
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Thanks to every one of you: Chad, Sandra, Rose, Lisa, Diane, Linda, Theresa, Irene and Laura for your thoughtfulness. Friends like you who care mean the world to me, and God bless each and every one of you. I love you all...
After today I'm off until 1/2 and I'm SO looking forward to spending some quality time with the kids and not having to worry about getting up and getting to work and making sure I have enough pullups, clothes, all the medical supplies, etc. I SO NEED A VACATION, and I LOVE Christmas, so maybe this is just what the dr. ordered! And my Mother-in-law is coming into town tonight or in the morning for 2 WEEKS... Gosh, I hope she gives us a hand. She's not too good about that type of thing, and tends to sit around telling us about her health issues. I so DON'T need that right now. I even asked my husband to call her and warn her about my mental state right now, and explain that we need HELP, not additional problems. :lol: :lol:
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| jayjay | Dec 22 2006, 02:28 PM Post #336 |
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I KNOW for a fact that there has to be something the school system can do for her. Right now I'm working on getting a nurse to catheter once a day at noon. That's in the works but taking forever. That will help... with this diarrhea thing, hopefully this is temporary, but they're telling me that there isn't anyone that can help clean her up. This is a very small county school at my work (the county provides the teachers and cirriculum and the company provides the building and maintenance) so I suppose there's no funding to keep a nurse on the premises all day. I'm working with my pediatrician on that one... but again, this may be a mute point if I can just get her stool normal again! If this continues another week, they want me to bring her in to take a stool sample to make sure nothing else is wrong with her.
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| jayjay | Dec 22 2006, 02:32 PM Post #337 |
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I have a legal plan at work that I pay for... I'm simply going to turn it over to them. Hopefully the cop won't show, but he was a real jerk... he'll be there I'm sure. I was bawling my eyes out... he saw me. He acted like I had just committed murder and was really an ass. He had the "I'm God" complex. I'm not going to let this get me down, I have more important things to deal with. Believe it or not, throughout this nightmare I've actually also initiating a lawsuit against my roofer, who just got me for over $4000. I'd rather fight that battle than the ticket.
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| jayjay | Dec 22 2006, 02:39 PM Post #338 |
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Thanks so much... Well, she hasn't gone yet so I don't know... I guess I shouldn't call it diarrhea, it's just really loose. sorry... I know that's gross. Problem is, she can't even feel it coming out. The teacher told me she has to go into the bathroom to check her pullup. Then she comes out and tells the teacher she had an accident. But at least the teacher is totally aware now that this completely physical.Yes, the pediatrician mentioned yogurt yesterday, and something else that I can sprinkle on her food, but I don't have the name of it with me. I'll get her some yogurt tonight. I just hope to God that there is not something else wrong causing this particular problem. But the good news is.... she's still very very much a happy little girl who is anxiously awaiting a visit from Santa Claus... and something tells me he's going to be extra good to my girls this year.
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| Deleted User | Dec 22 2006, 02:53 PM Post #339 |
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Here in Indiana, I just got a ticket pulled by a friend of mine who's a city cop. But in some jurisdictions, you can forget about it. You then have to go to court to fight it. And St. Jude is in Memphis, Tennessee. And Janet, take this time to love your family! Screw the rest of the world. It is my Christmas wish that you have a wonderful holiday season and that Amber's condition gets better. I sincerely hope that she's handling all this well. And I truly hope you know what a saint you are for your dear Amber! St. Peter's already put your name in the book! Merry Chanakwanamas!
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| Merry | Dec 22 2006, 03:06 PM Post #340 |
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(((Janet))), I feel so badly for you, Amber and your family...I wish there was something I could say or do to make your situation better! I think what the doctor may be referrring to is Acidophullis, that's the GOOD bacteria that goes to work in the intestinal tract and aids in digestion. It's what is in yogurt, and you can buy it in a health food or vitamin store...I know, we sell it every day in either tablets or liguid. You might also try Psyllium Fiber which can be sprinkled on her food or mixed in with her drinks. It should add bulk to her bowel movements and is great for cleaning the colon. I hope this helps a little bit. My heart goes out to you! Wishing you all the best and hoping things start going better for you soon! Merry |
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| Queenbee | Dec 22 2006, 03:24 PM Post #341 |
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(((((Janet)))) My heart goes out to you and your family. I need to send you a care package for relaxation!!!! I can't imagine what your going through everyday with no break. On the radio John Lennon's song is on So This Is Christmas! Try to have a Merry Christmas!!!! We'll talk later. |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| LITTLE LAURA | Dec 22 2006, 08:24 PM Post #342 |
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You're right, you're right Beep. I stand--er make that sit :lol: --corrected. I found that out when I went to their website. I also scanned over their "disease list": wouldn't ya know poor little Amber's problem is one of the few not on it. PHOOEY ! However, they do say to have your [JayJay's in this case], Ped. give them a holler anyways, 'cause you never know..... |
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| jayjay | Dec 22 2006, 08:35 PM Post #343 |
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Thank you my dear friend... You're a real sweetheart. It is also my Christmas wish, however, this is one present I cannot buy her.
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| jayjay | Dec 22 2006, 08:36 PM Post #344 |
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I think shipping that stuff is illegal... :lol: :lol: :lol: :lol: :lol:
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| iscreamer1 | Dec 22 2006, 10:52 PM Post #345 |
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and through it all she hasn't lost her sense of humor. That's a good sign |
Laughter is the shortest distance between two people - Victor Borge | |
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| Deleted User | Dec 23 2006, 02:58 AM Post #346 |
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LMAO!! She's a hell of a woman, y'all!! |
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| jayjay | Dec 25 2006, 03:45 AM Post #347 |
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If I ever lost my sense of humor.... just shoot me. :rolleyes: I live my life for one thing -> TO HAVE FUN! And of course, to share that fun with others. And speaking of fun OHHHHHHH I cannot wait to see their eyes when they see what Santa brought! Speaking of which.... I gut busted by my older one tonight. I left one of the tags on the paper that already said To: Amber From: SC (yeah, I abbreviated ) and now she's really suspicious. I told her Santa must have already snuck in here to use some wrapping paper and tags!
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| jayjay | Dec 25 2006, 03:46 AM Post #348 |
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You're too kind...
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| scottycatt | Dec 25 2006, 08:00 AM Post #349 |
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Janet, I had you and Amber on my mind tonight. I hope Christmas is bringing at least a little much-needed cheer your way. Sometimes life just gets to be too much -- it happens to all of us at one time or another. Seems like you're getting all the bad stuff thrown at you all at once. Well, maybe Santa will bring some relief your way.
Please be good to yourself. Glad to see that you're still able to laugh. A very Merry Christmas and a most Happy and HEALTHY 2007!!!
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| Deleted User | Dec 28 2006, 05:14 AM Post #350 |
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Hope Amber had a GREAT Christmas, and I hope she still believes! I remember the year I was convinced there was a Santa. We went out of town for Christmas and my brother and I were scared to death that he wouldn't leave presents since we weren't at home!
Lo and behold, when we got home after the weekend, there were all our gifts from Santa! That was the year I got the coolest bike ever! Of course, years later I realized I had had an uncle Jeffery Claus that year. :lol: |
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| Queenbee | Dec 28 2006, 08:26 PM Post #351 |
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((((janet))) You are one funny girl ~~~ maybe you and Bert can use the bathroom together, (cough, cough)
let's hope for Super Bowl with the DA BEARS!!!!!!
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| jayjay | Dec 29 2006, 04:42 AM Post #352 |
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Yes, Amber and Casey both had a wonderful Christmas, and so did Mom... Thanks, Chad. And yes, she definately believes! Uncle Jerry Claus, eh, lol. :lol: Cool that you have those treasured memories... I'm off until 1/2 and I'm SO ENJOYING this time of relaxation. This is our annual 'do nothing' vacation, however, they've called the hubby in yesterday AND today! :angry: Good thing is that he's now completely finished with the job he was on and starts his new job when he returns on 1/2... and that new job comes with a huge raise. and more stress... :hmm: Amber update: we FINALLY got rid of her loose stool, and now it's too hard again. :wacko: It's supposed to be somewhere in-between. At least now she can control it a little bit and we're not dealing with changing pull-ups every couple of hours. And she is enjoying spending time at home with Mom and Grandma (my Mother-in-law is here for 2 weeks) and Sissy and the little boy next door (who practically lives here now too!) :lol: |
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| jayjay | Dec 29 2006, 04:45 AM Post #353 |
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:lol: :lol: I have no idea what you're talking about!
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| scottycatt | Dec 29 2006, 05:13 AM Post #354 |
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Janet, so glad to hear that you and your family are finally getting a break from all the stress and are having a chance to just enjoy doing nothing.
I'm guessing that Judy might be hinting at some "herbal relaxation", which many adults choose to enjoy behind closed doors, usually in the room with the porcelain throne. Then again, I could be wrong. Judy might have something more kinky in mind.
:lol:
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| LITTLE LAURA | Dec 29 2006, 05:34 PM Post #355 |
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Ummmmm.....or--how shall I put this politely---oh hell! Taking a shower for 2? As in MAKE OUT IN THE SHOWER!!!![]() GRRRRRRRIIIIIIIIIINNNNNNN
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| tagandolfo | Dec 29 2006, 11:37 PM Post #356 |
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Janet, glad to hear that your family enjoyed Christmas. Happy New Year to you all. |
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| jayjay | Jan 5 2007, 03:09 PM Post #357 |
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Thanks Bev, Theresa, Laura... Happy New Year to all of you! Well I've had a nice break since school's been out, but it starts back up on Monday.
I've got her diarrhea under control, however, her stool is probably too hard for the doctors to be happy, but at least I'm not changing sh*tty pullups right now! I've come to realize for certain she's not feeling either #1 or #2.
But she's still in good spirits and I'm doing better as well. Last night, for the first time, she asked for Mommy to do her 'tube' instead of Daddy! I must be doing something right.
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| jayjay | Jan 5 2007, 03:10 PM Post #358 |
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:lol: :lol: :lol: :lol: I don't think Judy wants me in the shower with her hubby! :lol:
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| BEATNUT | Jan 5 2007, 03:33 PM Post #359 |
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Shower? Did someone say Shower? :lol: |
| Location: Self-Imposed Exile. | |
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| Deleted User | Jan 5 2007, 03:56 PM Post #360 |
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Deleted User
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I keep thinking about you and your travails, Janet. I hope Amber's and your spirits remain high, and that she gets some repairing of her nerves going on! |
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| scottycatt | Jan 5 2007, 06:38 PM Post #361 |
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Janet, so glad to hear that you were able to enjoy the holidays. Sorry to hear that you're back to work on Monday. Me, too. :angry:
I hope Amber's little nerves will start to heal soon, but sometimes these types of things just take time. Sounds like you guys have adjusted to the situation just fine. I hope 2007 will bring a resolution to Amber's health issues and that you'll have a year free from hurricanes, surgeries, and lawsuits!!
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Why? | |
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| Jacaranda | Jan 6 2007, 12:35 AM Post #362 |
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Janet, hope that Amber has returned to school just fine and is adjusting again after the break. Glad that Santa was good to you all. I also hope that your stress levels don't go through the roof and that this new year will bring some much-needed relief for you all.
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| jayjay | Jan 6 2007, 02:41 PM Post #363 |
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I want to thank each and every one of you (again) for all of the encouragement you've provided to me since this whole nightmare started back in the summer. I know you guys are probably sick of hearing me moan and complain, and I know there are others who have it much worse than I do, but it's really really difficult to watch your baby go through so much during such a short life. So, thanks from the bottom of my heart to all of you and especially to Andy and Fiona for providing this site to bring us together. I know this sounds weird, but it's almost like I consider you guys to be some of my closest friends. When I'm lonely or feeling down about this whole situation, coming to this thread provides me with a boost. It's like talking to a psychologist without the bill!
Now I would just feel so much better if I were 100% certain that this is a temporary condition because I'm starting to have doubts. I've attempted to do research on how long nerve endings take to heal, but I haven't gotten far with that. :hmm: I think there are too many factors involved to get an answer. On the other hand, her incision is healing very well. It's gone from 8" to probably about 5"... (oh I'm leaving myself wide open on THAT remark!) Maybe I'll post a picture of her back again so you can see the progress. The human body is simply amazing!
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| jayjay | Jan 6 2007, 02:48 PM Post #364 |
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:lol: Funny you mention that; Steve (my hubby) and I finally went to see a lawyer yesterday about the $5000 my roofer ripped us off for. He said that we'll definately get a judgement, however, collecting may be the problem because there are so many things a corporation can do to get out of paying. Steve and I decided to pursue anyway because this assh*le was such a thorn in our side for nearly a year, I'm willing to PAY to be a pain in the ass to him for awhile! Don't f*ck with me, dude! :lol: |
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| jayjay | Jan 6 2007, 02:50 PM Post #365 |
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You dirty thing you...
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| maccascruff | Jan 6 2007, 11:33 PM Post #366 |
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Sing the Changes
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I understand that feeling, Janet. I refused to pay $11 I didn't owe and they sent it to a bill collector. So I brought in the Colorado Attorney General and got it resolved and off my credit report. They certainly spent more than $11 on that money. I had a paid in full report from them on them that they had sent me. |
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| jayjay | Jan 9 2007, 03:22 PM Post #367 |
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LMAO!!! Yeah, that's how we feel... I'm willing to spend a few hundred dollars just to give this guy grief. It can't be THAT easy to close down a corporation and create a new one. I would imagine that he'll have significant expenses doing that, and that in itself makes it worthwhile to me. I hate that sob! And for the latest on Amber... just when I was feeling much better she began to have a lot of pain over the weekend. I got her into the Dr's office to give them a urine sample. I just got word back late yesterday - UTI #8. THIS SUCKS! Why don't these damn things go away! Good thing is that she's feeling them now. :hmm:
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| Queenbee | Jan 9 2007, 04:48 PM Post #368 |
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Moderator
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Hmmmmm think Vegas.
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| Deleted User | Jan 9 2007, 04:49 PM Post #369 |
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Feel better, Amber!!! |
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| Sandra | Jan 9 2007, 11:57 PM Post #370 |
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Awww poor wee Amber. I hope you soon feel better poppet.
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| <a href='http://eapr-1/@0@Sandra@1@Edinburgh%2C%20Scotland@' target='_blank'></a> | |
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| Queenbee | Jan 10 2007, 02:22 AM Post #371 |
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Moderator
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((((((((((((((((((((((Janet and Amber))))))))))))))))), I feel for the two of you. There has to be something to help cure Amber. I know this is so hard on all of you. ((((Love n' hugs))) Judy xoxo |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| jayjay | Jan 12 2007, 01:25 AM Post #372 |
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Well, I got a call from my pediatrician today regarding Amber's latest UTI and had a LONG discussion regarding our plan of action from here. He had a long discussion with the Urologist and the Urologist feels that these latest two UTI's may not be UTI's at all. He said that anyone being intermittendly catheterized like Amber WILL have bacteria growing and that it's typical. We already knew that, however, she was feeling so much pain that it lead us to believe that they were true UTI's and there were enough colonies growing from the lab to call them such. Well, since the symptoms continue to return after a full round of antibiotics, the Urologist thinks that in Amber's case the pain she is feeling might be bladder spasms and simply pain due to healing of the nerve endings. He wants us to continue to treat this "UTI" with the antibiotic, then after this, NO MORE ANTIBIOTICS!!! He has even recommended that we take her off the Furadantin, which was the low dosage maintenance one that she's been on since June! When (I would say if, but I'm sure it's more of a matter of when) she begins to experience that type of pain after being off the antibiotics again. We'll get a urine analysis (not a culture) to determine if there is any blood/puss in the urine. If not, and if no fever, no antibiotics. Now we're determining at this time what the plan of action will be for the pain when this occurs. I think this is a step in the right direction. I'm thrilled that she's coming off the antibiotics! I also had a discussion about taking her to John Hopkins in Baltimore, and he rest assured me that neither my Urologist nor my Neurosurgeon were just local docs. They are both rated one of the best doctors in the nation, and I've read that myself. So, I guess we're not leaving the state..... yet.
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| BeatleBarb | Jan 12 2007, 01:33 AM Post #373 |
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Gosh, JayJay...I can't believe what you and your daughter have been through. I have been reading this for so long now...way too much for any little girl to endure. I certainly hope and pray this ends soon!! Enough already. I did have a friend who had a similar situation with her son and a would that wouldn't heal. It went on forever, but eventually it got resolved. You have one little trooper, I tell ya! Did you ever ask your doctor about probiotics and adding some good bacteria since the antibiotics kill all the good stuff too? |
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| scottycatt | Jan 12 2007, 01:41 AM Post #374 |
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Janet, glad to hear that Amber may get to be free from the antibiotics and that she's possibly starting to be able to feel bladder sensations again. Sorry to know that she's in pain, though.
It wouldn't hurt to pursue your research on the docs at Johns Hopkins. Sometimes it can take months to finally see a doctor, even once your referral has been approved. (I could tell you a really sad story about a similar situation that happened with our family. :cry:) Anyway, I'm glad the doctors are at least giving you some reasonable-sounding explanations for things. Sounds like they're really trying to get to the bottom of this issue (sorry -- poor choice of words, I know. )
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| jayjay | Jan 12 2007, 01:41 AM Post #375 |
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Thanks, Beatlebarb... Yeah, it's been awhile... this all started when she left Preschool and went to the elementary school to start summer camp at the end of May. Then UTI after UTI; then in the hospital for pseudonomas (UTI #3) in September (that's when sweet Judy started this thread), then we found out about the spinal cord while in the hospital, then 2 more UTI's, then the spinal surgery was on Halloween, and now 2 so-called UTI's since then. It's a living nightmare. Yes, the doctor did talk to me about that... My biggest concern is that one day she's going to need an antibiotic for something else and it won't work. I'm so thrilled that they're taking her off them... FINALLY! Oh, I also got some type of timeframe as well... we're probably looking at about 6 more months until she is able to begin to pass urine on her own again. THAT WILL BE THE ANSWER TO MY PRAYERS!!!!!! Longer than that for full functionality, but should start seeing improvements by then. |
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| jayjay | Jan 12 2007, 01:53 AM Post #376 |
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Thanks Bev... Yeah it sucks to see her to be in pain, but if it's a sign of better things to come, I'll take it! I am going to call the Dr. back in the am because I do want a plan of action when this happens again. The Urologist and Pediatrician need to be on the same page with pain management for her and they didn't provide that answer yet. If not, I'll end up in the ER within the next week or two when this happens on the weekend - just like last weekend when we almost had to go! Yes, we are exploring other possibilities in case it is needed, but I don't think so... |
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| Deleted User | Jan 12 2007, 02:00 AM Post #377 |
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Hey Janet, Wifey has bladder spasms from time to time and they are truly painful.
She was on a medication for them, but all it really did was turn her urine a weird color green or blue if I remember. The thing that gives her relief is a periodic "bladder washing". They seem to help a great deal. I hope the medicine can help little Amber. |
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| Jacaranda | Jan 12 2007, 02:08 AM Post #378 |
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Janet, glad to hear that Amber will be off the antibiotics. You are very right to be concerned that steady dosing with all sorts of strong antibiotics may lead to antibiotic resistance, which would be awful. I am hoping for the best for you all, and glad to hear also about the concept of plans of action, which seems needed for sure. Also pain management is very important naturally. If for some reason you have to come to Hopkins, by all means let me know because I live an hour away and if there is anything at all I can help you with (even to recommend local restaurants!) I would be so happy to do so. But I am crossing fingers that you never have to go to those lengths, and that everything will resolve as quickly as it can. How are you doing now? I hope you are a bit better.
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| Jacaranda | Jan 25 2007, 01:39 AM Post #379 |
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Janet, just resurrecting this thread to check in. How are you and Amber doing? I hope that things are going well for you. |
![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| Deleted User | Jan 25 2007, 04:16 AM Post #380 |
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I was wondering about Amber today as well, Lisa. Janet, how's things??? |
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| MarthamyDear | Jan 26 2007, 02:31 PM Post #381 |
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Yes, Please tell us how you guys are doing..................One more thought on antibiotics.........developing a resistance to them would be a big worry, but you can also develop an allergy to them over time from too many dosages! I found that out from repeated sinus infections, and broke out in severe hives last time (NOT pleasant at all!!), and now have a med allergy in my medical records as a result! One of the reasons why I feel finding another remedy, homeopathic or natural can never hurt
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| And it really doesn't matter if I'm wrong, I'm right.......Where I belong I'm right..........Where I belong. | |
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| jayjay | Jan 29 2007, 05:39 AM Post #382 |
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Hi All!!! So sweet of you Lisa and Chad to check up on us. I haven't been here much lately... busy life. :rolleyes: I want to say that I think we're seeing some very gradual improvments. Mom's improving as well.... I FINALLY have gone through all the red tape at school, and she has a RN assigned to catheterize her daily. I met her on Friday, and I like her VERY VERY much. I think she's going to be able to provide me with a lot of relief and some insight to things when I don't understand. I do have to say that my Urologist seems to have been 100% correc that the pains she's feeling are actually bladder spasms. Previously, she'd get these pains, I'd run her to the pediatrician, they'd culture the urine, find bacteria, and start another round of antibiotics. Now that I know, I'm helping her get through these 'episides' which last anywhere from just a few minutes to nearly an hour, and sometimes return shortly. And then she's fine for up to a day or two. The school nurse actually witnessed it on Friday and confirmed they're spasms. And these spasms are very normal during the healing process. SOOOOOOOOo....... I think this is a good thing! She's had NO ANTIBIOTICS in almost TWO WEEKS!!! I am a bit concerned about her bowels, however. I've been having one hell of a time getting her regular with a soft stool so she can get it out. The nurse actually witnessed this as well (she got to see all the fun stuff in the 15 minutes I spent with her!) and suggested an enema. I've increased the laxitive a bit, bless her heart, the last thing I want to do is stick something else another one of her holes! I'll keep you all posted.... I gotta get my butt to bed for an early Monday morning... BLAH! :lol: |
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| Deleted User | Jan 29 2007, 05:45 AM Post #383 |
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Deleted User
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That was good news, Janet!! Hopefully the news keeps getting better!
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| jayjay | Jan 29 2007, 02:19 PM Post #384 |
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Ooops... I forgot to mention a thanks to Marthamydear as well.
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| Jacaranda | Jan 29 2007, 10:18 PM Post #385 |
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Janet glad to hear about the improvements esp. the lack of antibiotics for two weeks. I suppose that in part her system could be messed up by the antibiotics -- they do affect a lot of people's digestive tract right? Of course I don't know really but I hope that everything gets straightened out for Amber. Have you tried suppositories? At least its not an enema..also there is Colace which is supposedly mild but I'm more familiar with this problem in adults (re: my mom) than with children so maybe the meds are different. Really great to hear that you have an RN to catheterize her too. Excellent. Also great to hear that life has been too busy to post...perhaps that's a good sign too, right? All the best to you, your family and particularly, Amber.
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![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| theonlyfab4fan | Jan 30 2007, 11:02 AM Post #386 |
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I AM THE BIGGEST JOHN FAN!
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Wow this sounds very promising Janet. I`m glad that things are finally improving for mom and her sweet little girl. |
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You say you want to save humanity but it`s people that you just can`t stand John came to me in a dream and this is what he said. "I had a vision of a man on a flaming pie, and he told me that Betsy with a B not Lisa with a L is the biggest fan of mine". John trumps 'the boss' ! I WAS ROBBED BY THAT DEVIL WOMAN | |
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| LITTLE LAURA | Feb 5 2007, 10:02 PM Post #387 |
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Just checking in to see how Amber's doing. Hope you all had a good Xmas. As for moi, after waitn' forever for an MRI booking, they told me they suddenly realized I CAN'T HAVE ONE !!! Apparently, ANYone with bits of metal in them, such as joint replacements, pins, metal plates, etc., absolutely canNOT have an MRI because the procedure heats up any metal inside you. YIKES So I'm back in limbo-land while they try to figure out what else to try. Phooey. :rolleyes: JayJay, I'm sending you an absolutely HYSTERICAL video, I'm sure Amber's gonna LOVE ! Check your PM's. The rest of ya, I'll post it as a new topic. Make sure yer sound's ON !!!
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| jayjay | Feb 6 2007, 02:35 AM Post #388 |
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Good to see you Laura... I've been thinking about you... I know exactly what you're going through with the MRI; it was ridiculous how long we had to wait! :angry: And that's true... they don't do MRI's if you have any metal. In fact, just before Amber's MRI, when they were asking us about her health history, when they found out she had tubes in her ears, they wouldn't do the MRI until we determined if they were metal. Sooooooo... since we couldn't get a hold of the ENT, they did an xray to see if the tubes were metal, plastic, or titanium. Turns out they were titanium. Now I know... Amber's doing OK... still no antibiotics and the bladder spasms have calmed down a lot and she's doing well with the RN at school. We had a few tough days last week again dealing with diarrhea and it really got her down that time. She was saying she wishes she was normal, and that if she never had to have the surgery, she would be normal. But we're all dealing with it better now. I just can't wait for that day when she tells me she has to go potty! |
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| LITTLE LAURA | Mar 5 2007, 08:30 PM Post #389 |
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So, how's Amber today ? |
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| Jacaranda | Mar 6 2007, 01:47 AM Post #390 |
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I'm glad you brought this thread back Laura, I was thinking about Amber and wondering how she is too. How are you Laura as well? |
![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| Dorfliedot | Mar 6 2007, 01:52 AM Post #391 |
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Beatlelicious
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I am so sorry for things that little amber has to go though.
I wish for her to get better. I will say a prayer..
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| Queenbee | Mar 6 2007, 04:06 AM Post #392 |
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Moderator
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Janet, I'm sorry to hear Amber is still having problems with pooping. I know when I'm on antibiotics it really messes me up. I hate taking them when I have to. Glad to hear your busy, hopefully camping? I saw the camping pictures of the girls, they look so cute on the four wheeler. I'll give you a holler this week. ME xoxox |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| Dorfliedot | Mar 6 2007, 09:00 AM Post #393 |
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Beatlelicious
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Another angel for Amber..
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| Kopite | Mar 6 2007, 09:16 AM Post #394 |
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You'll Never Walk Alone
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Beautiful animation, Dorothy. |
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“Above all, I would like to be remembered as a man who was selfless, who strove and worried so that others could share the glory, and who built up a family of people who could hold their heads up high and say, 'We're Liverpool'.” - Bill Shankly | |
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| Dorfliedot | Mar 6 2007, 09:19 AM Post #395 |
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Beatlelicious
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Thank you!
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| LITTLE LAURA | Mar 6 2007, 09:56 AM Post #396 |
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Same old....same old.....
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| LITTLE LAURA | Mar 6 2007, 09:58 AM Post #397 |
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..........old & creaky, that is !
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| jayjay | Mar 6 2007, 07:47 PM Post #398 |
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What a surprise to see this thread ressurected... thanks all. (((Laura))) I hope you're doing better. Are you still on antibiotics? How are you feeling? Are they doing anything for you? As for Amber, I wish I could give better news, but all is the same. We're still catheterizing 4x a day, her stool is ok some days, and others she has diarrhea or can't get it out. She feels no urge to urinate at all, and doesn't feel her poopy hardly at all. I'm really starting to wonder if this is permanent.
All I can ask is that you keep her in your prayers... It is so appreciated, thanks to all of you. The piece of good news is that she still hasn't had any more antibiotics.I have joined some online support groups and have come to the realization that this tethered cord problem is going to be a threat to her all of her life. Many infants who get this eventually tether again (usually at around age 12, Amber just happened to be the unfortunate one to have it sooner), and right before puberty (about 12 as I mentioned) is common. There's one gal who's had this surgery 6 TIMES!!! Unfortunately, she's now in a wheelchair. Another woman has 3 children, all with the same thing! I've also just realized that I'm going to have a problem this summer... No nurse to go to camp to cath her, and then what am I supposed to do on the days they have field trips? :wacko: More challenges if she doesn't get better pretty damned soon... :hmm: |
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| jayjay | Mar 6 2007, 07:48 PM Post #399 |
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How sweet... thank you. I will show her this tonight.
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| Dorfliedot | Mar 6 2007, 09:25 PM Post #400 |
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Beatlelicious
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Your welcome. It's not that great. but, tryed. |
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Hang in there
Aww. I am sorry about the bad news. Poor thing. I wish I could do something to help.

And please also, spoil Amber with plenty of Christmas presents. She deserves them.


:angry:




:lol: :lol:
I was bawling my eyes out... he saw me. He acted like I had just committed murder and was really an ass. He had the "I'm God" complex. I'm not going to let this get me down, I have more important things to deal with. Believe it or not, throughout this nightmare I've actually also initiating a lawsuit against my roofer, who just got me for over $4000. I'd rather fight that battle than the ticket.
sorry... I know that's gross. Problem is, she can't even feel it coming out. The teacher told me she has to go into the bathroom to check her pullup. Then she comes out and tells the teacher she had an accident. But at least the teacher is totally aware now that this completely physical.
and more stress... :hmm: 




8:10 AM Jul 11