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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 (5,196 Views) | |
| maccascruff | Mar 7 2007, 01:27 AM Post #401 |
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Sing the Changes
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Janet, you've been down such a long road and it sounds like it isn't over. |
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| beatlechick | Mar 7 2007, 01:39 AM Post #402 |
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In Paul's Arms!
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Janet, I know it's been a long tough road but don't get to discouraged. We're here for ya, if only for some good support. |
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| jayjay | Mar 7 2007, 04:39 AM Post #403 |
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Its lovely!... anyway it's the thought that counts... and she loved the sparkles.
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| jayjay | Mar 7 2007, 04:43 AM Post #404 |
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Yes, it's been a LONG AND WINDING ROAD.... one that I would never want any other parent to have to experience. I just wish I could wave a magic wand and make it all better for my sweet little baby. Thanks for your kind words.
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| Jacaranda | Mar 7 2007, 02:41 PM Post #405 |
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Janet, I'm sorry to hear that this is all continuing for you all and that it is such a hard road. You have incredible strength and I am impressed as always with Amber who has to be as tough as nails to go through all she has been going through -- just the endless cathetherizing would have slayed me long ago I feel. I hope school is going okay for her as well. It's funny now to say this but with kindegarten as tough as it is nowadays without any other additional stress, I hope that Amber feels comfortable at school. Here is a little something for her from my favorite site. You hang in there Mom, and I hope one day we can meet and have a nice time touring Maryland/Washington DC.
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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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| Dorfliedot | Mar 7 2007, 05:24 PM Post #406 |
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Beatlelicious
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Great, I thought she would.
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| MarthamyDear | Mar 7 2007, 05:40 PM Post #407 |
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Janet..........so sorry to hear there's not much improvement! I was wondering if the school is providing the nurse to cath Amber, or was it your health insurance that is supplying this service??? Wondering if you can line up a nurse during the summer for her, and if your health insurance might cover it??? I had a nurse assistant AND a nurse come to my house when I was on bedrest during my pregnancy for my first born....................our health insurance paid for it. Just curious.......keep your chin up!! |
| 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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| tagandolfo | Mar 7 2007, 07:44 PM Post #408 |
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Janet, My heart goes out to you and Amber. It is a long road you have ahead of you but I know you are strong and can handle it. You are right about the tethered cord issue. When I was in Grad school I did some research on it and know it can be a life long issue. I had hope for all of you that Amber has better care and luck than some I researched. Keep your head up. Glad you joined an online group. They can really be a support to you. Take care, Theresa |
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| jayjay | Apr 19 2007, 03:06 AM Post #409 |
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Well, the bad news is that today she's getting a colon cleanse!
The good news is that I get to take a couple of days off to do it! Isn't it bad when you'd rather clean sh*t than go to work!!?? :lol: No real progress yet... Still catheterizing 4x a day; no bowel improvements either, but the docs keep saying it could take up to a year. We're at 6 months and counting. :wacko: |
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| Sandra | Apr 19 2007, 11:08 PM Post #410 |
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How are you doing with all this Janet? It sounds pretty stressful.
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| <a href='http://eapr-1/@0@Sandra@1@Edinburgh%2C%20Scotland@' target='_blank'></a> | |
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| jayjay | Apr 20 2007, 01:47 PM Post #411 |
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Thanks for the hug Sandra... It is very stressful, however, I'm holding up. Since I'll have no help at summer camp I've decided to apply for FMLA on an intermittent basis. That way when she's on a field trip at camp, I can just take the day off and either go with them or keep her home. This just guarantees my job is safe. I will have a total of 60 days off whenever I need it over the next year and they can't say a word! This is going to save me from having a nervous breakdown! :lol:
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| Queenbee | Apr 20 2007, 07:50 PM Post #412 |
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Moderator
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((((Janet))) You know I'm thinking of all of you!!!! 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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| Rose | Apr 20 2007, 10:04 PM Post #413 |
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Well, here's another clue for you all, the Walrus was Paul...
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I hope your beautiful daughter starts getting better, Janet...
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![]() "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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| Deleted User | Apr 20 2007, 10:28 PM Post #414 |
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| jayjay | May 10 2007, 07:27 PM Post #415 |
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Well, I'm always here with my problems, so let me come here with some positive news for a change... for anyone who cares... :lol: It appears that we might have a little break-through! Not getting too excited yet because she still cannot urinate, HOWEVER, she is able to push pee pee through her catheter to form a little stream! We saw the surgeon yesterday and when he heard this he said that's a sign that the nerves are HEALING!!! What he doesn't understand at this point is why she is not able to get the urine out. He says that is a problem with the sphincter, and that might be fixable either through surgery, or it may get better as she continues to heal. Anyway, he is going to call the Urologist and I'll be back in touch with him in a week for our next course of action. In the meantime the pediatric Gastroenterologist has changed her laxative meds to see if that improves the bowel issues. I think things are looking better for my baby! I have to share this: whenever she is being catheterized and she does the pushing thing and gets a stream, she takes the end of the tube in her hand and laughs and screams 'FIRE HOSE!' :lol: :lol: :lol: |
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| maccascruff | May 10 2007, 09:38 PM Post #416 |
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Sing the Changes
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That's cute, Janet. I'm glad there has been some progress. |
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| jayjay | May 12 2007, 02:30 AM Post #417 |
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Thanks so much Maccascruff... you're a sweetheart.
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| BeatleBarb | May 12 2007, 03:02 AM Post #418 |
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Awww...Janet - I'm devastated that your little one is still having such trouble. It's just not fair. Bless her little heart and yours too! Such a stressul, horrible situation for you all. I certainly hope things finally turn around and that this represents some progress once and for all. Keeping my fingers crossed! |
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| jayjay | May 12 2007, 03:58 AM Post #419 |
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Aw... thanks Barb. Every time we make a visit to Miami Children's Hospital, I realize just how good we really have it. There are so many very sad situations, I thank the Lord for how good we have it compared to those in wheelchairs and some of the others we see. I know things have been hard for you too and you've been in my thoughts. Any progress there? I'll have to check your thread. |
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| Deleted User | May 12 2007, 12:33 PM Post #420 |
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Janet glad to hear that their has been some progress. Someday this pain will all be in the past for her, heres to that day coming soon. btw us boys play firehose too. :lol: |
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| Queenbee | May 12 2007, 02:02 PM Post #421 |
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(((Janet))), I'm so glad to hear Amber's starting to able to feel enough to push. Sometimes it just takes so long for those nerves to heal and heal I hope is what is happening. UPS man :-) (((((me to you)))) |
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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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| scottycatt | May 12 2007, 05:02 PM Post #422 |
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Janet, so glad you're finally starting to see a ray of hope for little Amber. What a long struggle this has been for you both. I really hope this is the beginning of a new chapter for you and your baby. I'm inspired by your strength and I think that Amber is one resilient little angel.
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| Sandra | May 12 2007, 09:56 PM Post #423 |
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Nice to hear some good news for Amber.
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| <a href='http://eapr-1/@0@Sandra@1@Edinburgh%2C%20Scotland@' target='_blank'></a> | |
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| Jacaranda | May 13 2007, 02:12 PM Post #424 |
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Janet: Thanks for the update -- I was wondering what was happening to her lately and good news is great! Funny story too.
Hope you and your family have a very nice happy summer, especially with your new camper. |
![]() "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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| tagandolfo | May 16 2007, 01:55 AM Post #425 |
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Good news Janet! |
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| LITTLE LAURA | Oct 20 2007, 03:37 AM Post #426 |
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Just checking in to see how Amber's doing lately. Will she be able to go out on Halloween this year? I know she was upset about missing it last year. Give her a hug from me, ok? |
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| Blondie10 | Oct 20 2007, 04:34 PM Post #427 |
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Hey Janet...I must have missed this thread......but ANY positive news is good news..... I am sending positive thoughts to you and your daughter...what hospital is she in .....I m pretty familiar with miami....I had Bolan at Palmetto Hospital... and he's also been in hospital with salmanilla (sp) for a week.... they where afraid he was going to go into kidney failure...I know what your going thru and it's pure stress...... Take good care of yourself!!! |
| There is a theory which states that if ever anybody discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened. -- Douglas Adams <a href='http://eapr-1/@' target='_blank'></a> | |
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| LITTLE LAURA | Oct 30 2007, 04:33 AM Post #428 |
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So, is little Amber going to be able to Trick Or Treat this year??? ![]() HAPPY HALLOWEEN AMBER !!! |
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| Deleted User | Oct 30 2007, 09:37 PM Post #429 |
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I hepe the best for little Amber |
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| jayjay | Nov 4 2007, 05:48 AM Post #430 |
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what a pleasant surprise to see this is still around... thanks for your continued thoughts... Here's the scoop - When she was able to push pee out by pressing on her tummy, we found out that it was not a sign of healing. Urologist said it has to come out if you press hard enough and that's what she was doing. Her one year post op anniversary just passed on 10/31 and there have been no improvements. Docs gave it a year, it didn't happen. They don't know why... just that she fell in the 10% of patients who get worse after surgery; 90% go back or maintain full bladder / bowel function. She lost hers pretty much completely... We've taken her to Shands which is notoriously known as a top hospital in the US, and our 2nd opinion told us the same thing. It doesn't look like she's going to get any better. Hard as it is, we're trying to move on. I've been through hell and back over the past year, my family's lives have turned around, but I continually tell myself it could be worse... She's a trooper, still in fantastic spirits. She prays now and we will never give up hope for a miracle. |
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| Dorfliedot | Nov 4 2007, 05:53 AM Post #431 |
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Beatlelicious
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Janet I going prey real hard for a miracle will happen for her.
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| jayjay | Nov 4 2007, 06:21 AM Post #432 |
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Aww... thanks darlin'. We're ok. She's one amazing kid. And she's made me a stronger person, and for that I'm thankful. I honestly don't know how parents of children who are paralyzed or disabled do it. I have a lot of respect for them. Now we're at the stage of really pushing her to catheterize herself. She's scared. I understand that. But she's 7 now and she needs to start becoming more independent for both our sakes. I'm on pee/poop call 24x7 with a full time job, a husband and another child who's 8. For my sanity and her well-being, she's fixing to start doing this herself... but shhhhh... she doesn't know yet. Hey, I just realized that we need a sshhh smiley.
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| jayjay | Nov 4 2007, 06:24 AM Post #433 |
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HI THERE!!! I haven't been around here in quite awhile... dealing with her and very busy at work, but I've been thinking about you! How are you doing????? Yes, Amber went trick or treating!!! But, unfortunately, we were dealing with Tropical Storm Noel. So she got about 45 minutes in with the hubby and her sister, and we got a DOWNPOUR! They came running home, laughing, soaked, and with enough candy to make me gain 20 pounds!
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| Dorfliedot | Nov 4 2007, 06:47 AM Post #434 |
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Beatlelicious
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You are such a tropper. and so is she . I can't help crying. I just wish children don't have go though stuff like this. I cant imangin any my kids or grand kids going though this.
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| jayjay | Nov 4 2007, 02:24 PM Post #435 |
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I know... neither could I a year ago. But you'd be surprised how we adjust. Every doctor has told me that she is taking this incredibly well and how lucky I am. Our Pediatrician insisted that I take her to a Psychologist because in his words 'any child going through this NEEDS to be speaking to someone.' So I take her (of course none of the ones the pediatrician recommended were on our insurance plans) and the lady barely speaks English. I explain to her for 45 MINUTES what her situation is... she is unable to pass urine, catheterized 5x / day, doesn't feel her poop coming out, etc. In the middle of the appt. Amber got full and needed a cath and began to leak - she was wet. The lady hands her the bathroom key and tells her to use the restroom across the hall! Obviously after a 45 minute explanation she DIDN"T GET IT... I said SHE CAN'T! After that, I figured this was bringing more attention to the matter and as Amber's Mom, I do not feel she requires a Psychologist. My husband agrees... I hope I am doing the right thing. After that rant, you're a real sweetie Dotti... thank you for your kind words. I am still praying for a miracle and will never stop. |
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| Rose | Nov 4 2007, 03:19 PM Post #436 |
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Well, here's another clue for you all, the Walrus was Paul...
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Janet...your daughters story has touched my heart. You and your family are in my thoughts...and prayers. |
![]() "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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| BeatleBarb | Nov 4 2007, 04:25 PM Post #437 |
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Janet -thanks for the update on your little girl. I'm so sorry you are still struggling so, but what a gal you have there. She must get it from someone close to her! I sincerely hope that miracle happens and she improves. Val - how is Bolan? What a frightening experience! I hope all is well by now. |
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| SherryO | Nov 4 2007, 05:24 PM Post #438 |
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Sending you positive thoughts, & prayers! Glad to hear that she got to out on Halloween! Take care, & keep us posted on her! |
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| maccascruff | Nov 4 2007, 08:06 PM Post #439 |
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Sing the Changes
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I thinking teaching her to do some of her own care is a step in the right direction. Of course, I've never had children, but you can't do everything, Janet. |
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| LITTLE LAURA | Nov 7 2007, 09:02 PM Post #440 |
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Ooooh, I'm sooooo glad she got to do at least some this year--and on the actual day/evening. I remember some neighbours were kind enuff to allow her to do a little before Halloween last year, but doing it on the DAY is sooo important to the kiddies at Amber's age. Me? Same old, same old, more or less. But I'm finally stating to lose some of the excess weight I gained over the past 4 yrs due to being forced into an extremely sedentary lifestyle due to this kidney flare-up. [I've lost 14 lbs. in the last 6 mths.! ]. So, that's a good thing.
I can't believe it's been 3 1/2 years since that crisis reared it's ughly head again!!! WHERE has the time gone? I thought it only flew when you're having fun !Also, my eyes have recovered extremely well since the double cataract surgeries last year. And I'm STILL getting a HUGE kick outta no longer needing glasses for near-sightedness. Reading--sight tho, is another matter. But after a certain age we all have that problem!Now, if only I had a few days break from that ole' constant pain I'm always in, from the effects of that life-long & [very] rare arthritis thing I have, things wouldn't be too bad....... |
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| jayjay | Dec 4 2007, 05:01 AM Post #441 |
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Oh, Laura, I'm so sorry to hear all you're going through. You're in my thoughts... Hopefully they are providing you with pain relief??? You should not have to live in pain!Well last week was a proud one for Amber. She put the tube in herself! One of our nurses took a desperate call from me a few weeks ago about her learning to self-cath, so she had us go in & she gave us a mirror, a coloring book, some info about the female anatomy and spent about an hour with Amber to show her what to do. Then she actually did it for the first time at school and her school nurse let her call me. I'm proud of that little pistol.
She's nowhere near doing it herself all the time, but baby steps are good! |
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| Deleted User | Dec 4 2007, 06:14 AM Post #442 |
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JayJay I pray for your daughters speedy recovery. My own little girl had a blader infection when she was about that age, it cleared up rather quickly, I'm sorry your little girl is having a hard time shacking it off. My advice, don't just ask the doctor questions, talk to the pharmissist. I have a good relationship with mine and he told me things (not particularly in this case) on treatment, prevention ect. |
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| beatlechick | Dec 4 2007, 07:06 AM Post #443 |
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In Paul's Arms!
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JayJay, may that miracle happen. Good that Amber is in good spirits, that is a wonderful thing. Good to know that she is learning, too.!! |
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| maccascruff | Dec 4 2007, 03:59 PM Post #444 |
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Sing the Changes
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Progress is progress, Janet. |
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| Rose | Dec 4 2007, 04:02 PM Post #445 |
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Well, here's another clue for you all, the Walrus was Paul...
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Janet...I"m glad your beautiful daughter is doing better. You must be so proud of her!
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![]() "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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| Blondie10 | Dec 4 2007, 06:00 PM Post #446 |
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God, Barb....sorry, I just saw this... Bolan is just fine thank God.... Thank you so much for asking!!!
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| There is a theory which states that if ever anybody discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened. -- Douglas Adams <a href='http://eapr-1/@' target='_blank'></a> | |
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| Dorfliedot | Dec 5 2007, 03:27 AM Post #447 |
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Beatlelicious
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My prayers are always there for your daughter. |
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| jayjay | Feb 29 2008, 04:46 PM Post #448 |
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Just wanted to let you guys know.... Amber is now catheterizing HERSELF!!!!!!!!!! She's accepted this as part of her life... although she occassionally aks 'why me'? I tell her the only thing I know to tell her... this is the way God made it after your 2nd surgery. You are strong and you will handle it. I AM SO DAMNED PROUD OF HER!!!!!!!!
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| LadyMacca | Feb 29 2008, 05:40 PM Post #449 |
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Woohoo! That's such great news!
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| Rose | Feb 29 2008, 09:54 PM Post #450 |
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Well, here's another clue for you all, the Walrus was Paul...
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Wonderful news! What an incredible daughter you have!
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![]() "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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| LITTLE LAURA | Apr 15 2008, 04:54 PM Post #451 |
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I'm sooooooooo glad she's making progress. That's such good news. She will always have those moments of "why me?", but as long as they're just moments, & she gets thru them, she should be fine. It's important that she always be allowed to express her frustration, & not keep her feelings suppressed inside. Nor be made to feel badly for having them. I can tell you, from personal experience, that telling her that so-and-so is worse off than her so don't complain, only serves to de-value her own struggles. While it's important to keep a perspective, it's equally important to validate her feelings. She's a tuffy, so she'll probably do ok in the long run. |
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| BikerLikeAnIcon | Apr 15 2008, 11:26 PM Post #452 |
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That's great. She's an awfully strong little girl!! |
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| jayjay | Apr 16 2008, 04:26 PM Post #453 |
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Thanks, Laura... very good advice! I do ocassionally tell her that it could be much worse, but you're right... her feelings are very valid! We decided, with the pediatrician's suggestion, to take her to a child psychologist. Actually, we're all going as a family... just to help us deal with this life change, to deal with behavioral issues, and everyday life. We go weekly, and I think once the psych. gets through her observations of us as a family and begins one-on-one's with Amber, it will do her good. It will give her someone neutral to talk to and someone who's not so close to her. I figured it couldn't HURT, anyway. :wacko: But sometimes I feel like we're just wasting our time and money. :wacko: |
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| jayjay | Apr 16 2008, 04:27 PM Post #454 |
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That she is! Thanks Tassy..., |
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| LITTLE LAURA | Apr 17 2008, 06:25 PM Post #455 |
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That's a VERY good idea--having her go to a psychologist that is. This way she will have a non-judgemental source she can vent to, who can also guide her thru this. This is NOT a waste of time or money. Here's another thought. As an adult, my younger sister has told me that when we were growing up, tho one side of her understood why the seeming extra attention I got was absolutely necessary for my well-being, the child she still was, was jealous of it. The other kid(s) in your family will also benefit from being able to express what they're feeling to the psychologist too. |
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Thanks for your kind words.




This is going to save me from having a nervous breakdown! :lol:


Not getting too excited yet because she still cannot urinate, HOWEVER, she is able to push pee pee through her catheter to form a little stream! We saw the surgeon yesterday and when he heard this he said that's a sign that the nerves are HEALING!!! 
Hope you and your family have a very nice happy summer, especially with your new camper.


I can't believe it's been 3 1/2 years since that crisis reared it's ughly head again!!! WHERE has the time gone? I thought it only flew when you're having fun !
You should not have to live in pain!


8:09 AM Jul 11