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katiesmom

Need to be strong for her

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Katie had a crash on 2/12. The surgeon didn't watch for blood clots, even when called in by the nurse because her leg looked "dusky", he still didn't do anything. I was living on the East Coast and this happened in Cali.I flew out with her 12 yr. old brother one week later when the problem with the leg first developed. So, 2 mos. later and she had an AKA as of this past Sun., 4/6. All that time spent with one doctor after another saying, "I can save her leg",or "maybe I can", but end result is nothing worked. I now have this beautiful, 5'9", willowy, blue-eyed blonde, age 23 who has 2/3 of her leg missing. If this were the direct result of the wreck I could make peace with it eventually but this is a man's doing, the othopedic surgeon no less. I'm so sad, I'm so angry and I want so badly to try to help her transition to her life without that right leg. Mainly I just needed to vent. Thanks for listening

Katiesmom

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Hello Katie's Mum,

Wow, what a very sad story. I feel very much for Katie...and you, she has physically lost so much, and typically, those around us also suffer so much.

Probably, nobody will ever be able to explain why, to your satisfaction, but it has happened.

The answers will eventulate but unfortunately that will not change what has happened, you still have a beautiful, 5'9", willowy, blue-eyed blonde, age 23 daughter.

She still has a lifetime to experience, dreams to fulfil, and her own mountains to climb. All of us here understand the angst both she and yourself currently feel. It's not easy at first, but fortunately life goes on, those mountains that seem so unclimbable at first are breached, please believe - the goals can be reached.

It will take support from you,, but you are a mother, thats your job.

For yourself - Katies mum - vent your anger..... you have every right. Sometimes life is not fair, but it is life, it's the way it is, we can't turn back the clock, we can't change what has happened, the only choice we really have is the way we react to todays situations. Be strong for Katie, when you think she's ready introduce her to this forum, there are many positive people here she can talk too.

regards, love & best wishes to you both

Glenn

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Katiesmom,

I am so sorry for Katie and what she has to face it truly is sad when the professionals that we trust so much or should trust so much hurt us in a way that takes something from us. You are doing the right thing researching about amputations and finding amputee forums to post your frustrations and anger on it will help you also. I can tell you love Katie very much and want the best for her so when she is depressed and cries hug her and tell her that you love her. She will love you for your support that you give no matter how small you think it is....

This is a life alturating thing but if she has the courage and determination she will get on with life and can lead a good life it she Chooses to... Life will be slower and things will be different but it is a duable thing with the right prosthetics. She is still that beautiful 23 year old blonde hair blue eye girl.

I will keep you and Katie in my thoughts and prayers....

Ask questions and I'm sure someone here can help you.

Brenda :D

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Dear Katie's Mom,

We understand how you and Katie feel.

I too am a 5'9" Right AKA, amputee since 1/13/03. It is tough at first, but by talking to other Amputees and learning how they got through Katie will eventually have the same hopes, dreams and goals,

that she had before.

The members of this group are so positive, that they have told me that amputees can do anything that anyone else can do-just slower.

I stayed around the house for 3 mos., but now I go most places with crutches and just wear long skirts. This group and my surgeon even told me I could drive.

When I get my prosthesis, I intend to travel wearing my pants and boots that Niki informed us that she wears.

Hope this helps you and Katie

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Thank you for all your encouragment and not responding with well-meaning, yet maddening drivel such as "this happened for a purpose", or "things will get better". Right now, on Sat. 4/12/03, this just doesn't register. I feel shellshocked. It feels surrealistic. They took her last Sunday to surgery one day early as she had started running fevers last Fri. night. No wonder though. She had open incisions from the fasciotomy and hardware from the attempt to save the leg which had not been cleaned or bandages changed in a week. After surgery Sun., Mon, Tues., and Wed. during the day she ran horribly high fevers and was in ICU in critical condition. All cultures came back negative. So...she finally turned the coner and then on Wed. night after the fevers subsided the pain set in. She screamed into the pillow over and over and over., she pounded her good leg, she clawed the sheets, she clung around my waist and I couldn't do one damn thing to alleviate her pain. She asked for a gun to shoot herself if she was going to have to endure that level of pain for very long. I asked for an extra bullet in it for me. It was horrible, I can't describe the feeling of seeing your child trapped in a bubble of hideous pain, pounding for you to help her get out and you stand on the outside with useless arms and legs. Worthless. The doctor said her pain was normal and I said there was absolutely nothing normal about it. Did you have that much pain? Was she perhaps just so weakened from the 2 months and 9 surgeries of attempts to save the leg? I would love to hear your answers about your first few days post surgery. There is something horribly comforting in knowing this too shall pass because you have been there too. You are all proof positive (stressing the POSITIVE here), that we'll make it. Thank you again for taking the time to be here for us.

Katie's Mom

Donna

"When you're going through hell, just keep going".

Winston Churchill

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Dear Katies Mom,

My name is Vicki Williams, I am the mum of "Niki lea"

Wow i know how your feeling, Niki had her right leg amputated below the knee, she was in a serious car accident , being trapped for two hour, the police knocked on our door at 2 am. in the morning, we rushed to the hospital to be told that they would have to amputate her leg, the doctor said dont worry it will be just like Paul McCartneys new wife. I will never be able to decribe the :( feelings i was having when told this, disbelief numb shell shock, Then how would I tell Niki this when she wakes up. All I want is my babys leg back, how helpless i feel, but for the rest of my life i will be there for her, to make her laugh, to pamper her, I take her to the hairdresser, and beautician and all girly stuff we luv, I just want her to feel good. I too was on the forum searching for help, and its great to know we are not alone, please stay intouch and ask all question you like, I hope Katie will join us too, We all need to talk.My thoughts are with you and Katie

And believe me, as a mother I know exactly what you feeling.

Vicki Williams Australia

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Donna,

When you think you have read the worst you read something even worse. My heart goes out to you and your daughter. While reading about her severe pain and wanting a gun to kill herself with and you requesting another bullet for yourself I cried tears of sadness. I am truly sorry Katie is having such severe pain. I don't know if you read my introduction or not but I'll briefly tell you I was born without my right foot and prosthetics were going forward but I couldn't get the advanced technology because of the length of my leg. I opted for revision surgery and that was on 8/1/02 my husband said right after they broght me to my room I screamed I don't want to do this. Well guess what tooo late. I was in severe pain so my wonderful husband and mother in law helped me to push my morphine pump so I could get comfortable. Well guess what I had such a bad reaction to the morphine it made me SICK for 2 days I was sick but the pain subsided. Tell her doctors you want her to be put on pain meds and something for the phantom pains. I'm not going to suggest any medications you need to ask the doctor what is best for her. There are many medications out there that help Phantom pains and there are side effects to them so that is something to consider also.

Right now it might seem hard but it does get better. It will take lots of patience and determination on Katies part but I know that you are going to help her.

You are still in my thoughts and prayers.

Give Katie a GREAT BIG HUG from me.

Keep us posted.

Brenda

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Thanks to all of you who have written and extended your hands of friendship to steady and support me over thousands of miles. I've realized this: these are all horrible experiences which you all have gone through as the amputee or person who loves them. There is not one of you who hasn't suffered greatly but gotten through it. We will too. It's just that I feel we all got an unwanted, one way ticket to a place we've only heard about from other people's nightmares. We've always listened, nodded, looked away uncomfortably and thought "there but for the grace of God". Well, we've landed and I now wonder about the grace of God too. How could He let this happen to such young, sweet bodies? Even my 12 yr. old said "Mom, I think God hates us". A dozen, banal responses popped into my head which wouldn't have satisfied him so I didn't say anything. Poor kid got yanked awake from a sound sleep 3,000 miles away 2 months ago and it's been planes, trains and automobiles ever since! We're still living in a motel near the hospital as the cost of housing in Southern California is astronomical. He's embarrassed to tell his schoolmates we're "motel people" so he sticks to himself. His sister wasn't the only victim. Katie is MUCH better today although did begin running a fever again last night. If they can keep her fever free, she will go to a convalescent home later in the week and from there, home(?) with us. Her father lives out here in Cali with his new wife but has said they don't have room for her in their home. That has been another traumatic event to add to the pile: her Dad's refusal to assist in her housing, post-convalescent home. Katie and the stepmom don't get along very well and the stepmom feels it would be too stressful. Yes I know, I DO hope there's such a thing as instant kharma. Well, I've gone and run on again but thanks for listening...as I CERTAINLY can not budget in a shrink at this point.

Stranger in a strange land,

Katie's mom

Donna

"When you're going through hell, just keep going".

Winston Churchill

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Hello again Donna,

I have been following the posts since your first entry and from my experience you are doing everything right for yourself, and/but you will also need to get Katie talking about herself and her fears also. The last sentence in your last post jumped out at me "Well, I've gone and run on again but thanks for listening...as I CERTAINLY can not budget in a shrink at this point."

My reasoning for saying this - sorry but must start with my story -

My amputation was due to an accident, I was packing the boot (trunk in USA) when a drunk driver ran into the back of my wifes car. Pretty much took my right leg off then and there, lost heaps of blood etc and the ambulance drivers didn't give me much chance of making the hospital. Was very lucky and made it to hospital, I had great surgeon's who spent 5 weeks trying to save the leg, in theatre every 3 days due skin grafts etc, but unfortunately got an infection in the new grafted artery which eventually burst, I had another cardiac arrest due blood loss, but fortunately was found and restocked with blood while they pulled what was left of my leg apart to stem the blood flow.

I had to get back to work as soon as possible as - I am the family breadwinner. I am the "man" of the family. I had to get back to work to prove to myself that I was still a "complete" man etc - acceptable to my wife and children.........yes I agree it was all b...s..., but that was what was in my head. I was back at work 6 weeks after I left hospital.

Why did I think like this - because I didn't have anyone to share my thoughts and fears with. Many many friends and family, but nobody to really talk too.

18 months later I was seeing a psychiatrist due my personal life was going to hell. I was doing a great job at work but my family was suffering due to my personal insecurities within myself. His advise - write about myself (to myself only at first), talk about my fears, difficulties, frustrations & insecurities. Talk about myself . It was only then, expressing myself in the written word that I started to heal and understand myself, accept myself, because I could read what I wrote, as against "thinking my thoughts".

Sorry you had to read all that babble......the only reason I told you all that is to point out - don't bottle your feelings/needs in, express them somehow ..... such as posting in this forum. You don't know anyone here so you can be very honest with your thoughts/fears, vent your anger.... then your mind clears and allows the real healing process to begin. I had to pay for this self-healing suggestion from a psychiatrist, I'm glad I did as it worked for me.

Best wishes

Glenn

:wub:

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Donna.....katiesmom..,

I am not an amputee but I have nursed many and assisted at surgery.

Of all the surgery I have seen (which is everything ) nothing broke my heart so much as amputations. Nursing the patient after was heartbreaking too. As you describe so well, the agony of the phantom pains. The itchiness that can,t be scratched. The fears, often proven right, of secondary infection. Then the whole re-learning process of having a limb fitted, whilst searching for motivation and acceptance. You wonder how you and your daughter will ever feel normal again etc etc.

But hang on....you have every right to be shocked, to feel your daughters agony and your own helplessness. The loss of a limb is a death of sorts which always brings with it the grieving process. Let it all happen. Live those emotions. They are part too of the HEALING of mind and body. I pray that your daughter will soon be free of pain and that you can stop feeling guilty about having your legs intact. My compassion and my heart go out to you and your daughter.

Hugs ....to a brave mom and her courageous daughter.

Angela

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Katie got transferred to an "acute rehab" facility today. This is mostly just a warehouse for the aged. Poor thing is one of the few souls under 120 there! I told her there was her motivation to get more mobile more quickly. Tonight provided a bit of levity to her newfound life's circumstance. Her brother (22) got his first look at her "stump". And let me say right here and now, I really detest that word. It rhymes too much with other words such as frump, grump, dump, lump. I never liked "stump" before this happened and I'm going to come up with something another word. Anyway, her brother told her when she meets with the prosthecist to see if she can add on "extras" to her leg such as turbo charge, phone, palm pilot, remote control. She smiled at that and that was a good thing. I told her about the wonderful people I'd met here and she will be posting tomorrow to introduce herself. I also told her what happened to her was a sad, sad story. But no sadder than Glenn, Brenda, Vicki and Niki lea and "Phharr". Each one of you telling me about how you became an amputee (or mom of), broke my heart and I cried for you as much as I cried for us. Our story is no worse than any of yours because this is what I realized: there's no way you get to this point without a horrible, tragic, story accompanying it. Thank you, thank you for being here for us. You probably kept me from climbing a tower with an AK47 or some such (not really, heights terrify me!). I know we have a long row to hoe as my good ole', southern mom would say, but I have friends to lean on now when my back (and heart) are breaking.

Katiesmom

Donna

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Donna,

I'm glad things seem to be getting a little better for Katie. If you don't like the word stump try residual limb (I hate that word even more and prefer stump). I like what your son asked her that was pretty funny. Hi tech out of the world leg. lol...........

I can tell you that it is nice knowing that there are others out there in like situations. It helps to know that others have come before you and survived and others are following behind. It really has to do with attitude and being patient to know that things won't happen over night but eventually she will be up and walking again. I know a few AK's that even run so that can be a possiblility. With you behind her and showing her that you are with her for the haul she will do GREAT. I can't wait to meet her.

Big hugs to you and Katie,

Brenda :D

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Dear KatiesMom (Donna), :)

I have been following your sad story from the beginning. It does my heart such good to know that members of our forum have helped you and your family through this most difficult time. :huh:

We look forward to with open arms, when Katie is ready to join us and post online. We realize that this is still a very early stage in her healing process, so when she is ready, we will be here for her. :huh:

We look forward to your continued participation on our forum. You have become part of our forum family, and we will want to know how you are doing as well. :wub:

Sending love and prayers your way :wub:

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Hi Katie'sMom,

You mentioned that Katie is now in an "Acute Rehab" facility. I have been in 3 in the last 2 years (3 surgeries). I know what you mean by Katie being the youngest one there. I am 59 yrs young and I have been the youngest also. :o

What we do have in common is that Katie and I are also the ones with a life outside the rehab center. Many of the people were put in my rehab/convalescent ctrs, by their families or the state and would be there until their end. A few came thru w/hip replacements or amputations and were considered short timers. There was some resentment between the groups. I wish I could open a rehab ctr for people who were just transitioning from major surgery,

As you told Katie, she must use this as motivation to get mobile by making the most of her Physical Therapy and Occupational Therapy. I stayed in the PT room, even when the therapists had gone home. Other times I stared out the window and watched the world go by and prayed to be able to join in, but not with the same stressful life as before.

Also, she should realize that the elderly residents of the Rehab Ctr. are so sad. Since she is not in their shoes, that is just another reason to appreciate what life has in store for her. Look at all the things she can still do that they can only wish to do.

I thank God every day that I was able to go from surgery, rehab, wheelchair, crutches to hopefully a working prosthesis-and that I am alive and out of the house.

Love

Phyllis

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Dear Donna and Katie,

When I read your posts , i can not believe, how much your thoughts are like mine. I hate the word stump, when Niki showered for the first time, I said to her, jokingly what will your new nik name be. stumpy or peggy,she wasnt impressed at the time. But two days later she said I think i will call it peggy, Her young brother and sister would visit and she would wave peggy goodbye to them, and make them laugh. Having a sense of humour is so important. The Physio didnt like us referring to peggy, but he knows now we are a bit different, he now says put peggy up here for us to look at. We are training the doctors and physios not to be so serious when dealing with us. Its been 11months since the accident , and if anyone would have told me that Niki would be doing all the things now , i wouldnt have believed them. I still ask questions like why did this happen to my girl, how unfair, a good girl , a good worker, never one to sit still. Why on earth did this happen. I want it to be me :( , But all of these things do not help Niki, It has happen and i dont know why. Niki says i will never know what it is like and that i do not understand. Johnny v. says, that is true but Niki will hopefully never know what it is like to be a mother of an amputee. Hang in there Katie , with a mother like yours , you will do alright . And tell your brother to keep up the humour, for his sister, I know his heart is breaking, watching his sisters pain. We tell Niki all the time , We will get her the best kick ass leg ever. Her ultimate gold is to have a Heather Mills leg. And why not, she deserves the best. My love and thoughts are with you both. Vicki and Niki Australia

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Katie's is sitting beside me at the rehab facility on the next computer. I already have a nickname for her, "Eileen" (I-LEAN). You're right, without a sense of humor it's the dark side 24/7 and who can keep up that kind of doom and gloom schedule? Depression is exhausting. The prosthetist (I'm still working on the correct spelling AND pronunciation) came by today. He said that his goal initially was to get her up and walking. From there, she will move on to a leg which is geared more to a specific lifestyle. She chomping at the bit and can't wait to get her leg. Here is where you all could again help us out and give us some info on your personal experiences when it came to getting fitted, etc. Thank you all again. You're wonderful. If I didn't have this forum to run to, I don't think I could be this positive, this soon. Please know you have all made a HUGE difference.

Katiesmom,

Donna

:D

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Hi Everyone,

This is Katie. I don't really know what to say right now. I went through and read all the messages and it was vey touching to see how many people really care and are going through the same thing. :D So far I am handling this whole thing much better than I ever thought I would. So I just can't wait to get my leg and get back to a normal (whatever that is) life. Anyway Thanks to everyone out there and I look forward to keeping in touch.

Katie

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Welcome, Katie,

Your one brave kid, keep up the good work, and ask all the questions you want, Im sure you and Niki lea will get along just fine, my love to your mum, and once again, a big warm welcome!

Vicki Williams Australia :D

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Katie,

Welcome to the group. I'm sorry you had such a hard time but you have found a great place to post your questions, concerns, fears and of course your triumphs. I am so glad you are doing better, with patience and support from your family you will be just fine. My suggestion to you if it's available is find a good therapist that has knowledge of amputees and prosthetic components so they can help you with the gait training. Exercise is going to play a role in how well you do so do your stretches.

BIG HUGS to you and your mom

Brenda :D

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Dear Katie and Mom,

I too am a mother of a child (I say child, he is 25:-) ).. amputee. Matt was in a jetski accident May 2002. He was hit by another ski, which left him with a broken pelvis, 2 rods in his thigh, plates and screws in his vertabra, and amputation of his right foot. We almost lost him, But God saw fit to let him live. The doctors said that he should have been dead or paralized. We are very thankful to still have him. I wish I could say it has been an easy road thus far, but I cant. My heart breaks for him, as I see him struggle with day to day activities, that we take for granted. He has accepted this right from the beginning and is determined to regain his life and things that he loves to do back. He has already been back on a ski ( I cry every time he pulls out of the driveway to go ride), and pretty much does what he wants to do. He just had a revision on his leg and is waiting for his new prosthesis.

Like you other moms on here, I am very proud of my son. I hurt when he hurts, I cry secretly for him as he struggles to gain his independence back, AND I am guilty of trying to overdo for him, in which he has to remind me constantly that he CAN do his own laundry and things. It is very frustrating for him because he had owned his own home and was on his own for several years before this happened, and now has moved back home with us for a while. I am sure that I do not fully understand how he feels, and even though I understand medically why they cant do a foot transplant, I still stuggle with why they cant take my foot and make it work for him. I have never hurt so deeply before in my life, as I watched him for weeks in the trauma ICU, lie there lifeless, and then when he finally came too, as tears rolled down his face when he looked at me and said, "just hold me mom". It is a feeling that no one can explain or understand, except you mothers out there that have been there.

And yet, life goes on. One day at a time, each day being a new beginning, in which we have to gain new strength, new encouragement, for ourselves, so that WE can be strong for our kids and the trials that their day will bring for them.

I am so thankful to have found this site. To finally have some moms that have and are walking where I am walking.

My prayers for all of you..

Vicki

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Vicki Mom to matt,

This is Brenda we have e-mailed each other and even chatted on AOL. I am so glad that you found this site it not only is a site for amputees helping each other it is also a site to help family members as well. Amputation doesn't just affect the amputee it also affects the family it can bring sorrow and pain but it can also bring triumps when you see them doing the things they once did. I know it has to be hard for you to watch your son pull out of the driveway with the ski in tow but you wouldn't want him to be a couch potatoe and dwell on it and woo me. I can't imagine not having a active life and do the things that I want to do. The only difference between me and your son is that I was born without a foot and didn't have a choice in the matter but he really didn't have a choice either if you think about it. I know it must have been a hard decision to make but you made the right one he is here and alive. I admire you and the other moms that post on this site because it shows the love and compassion that you have for your child. Keep active in their recovery and be supportive but also remember they need to do things for themselves to such as laundry.

Keep on posting here.

Brenda :D

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Dear Vicki and Donna, :D

I am glad that we have found each other, because i never thought i would have anyone understand the feelings i have been going through , Vicki and Donna what you have written in your posts are my feelings also, I have said that surely medical science can grow a leg some how. I also would give my leg to Niki if this were possible. I ask the doctors, they look at me as if i am stupid, But Mothers must only think these things. So it nice to have you guys listen and understand my feelings.

My thoughts are with you. And lets make sure Niki ,Matt and Katie get to know each other,

Vicki Williams Australia

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I was beginning to think that I was the only one out there with these thoughts. Every doctor we go to , I ask the same questions. Matt gets very aggravated at me for this. But all I can tell him, is that I will spend my lifetime searching for something better, something new, new technology that will put a foot back on him, a better prosthesis......He just doesnt understand. Even my husband doesnt. But it's a drive inside me that I cant explain, but you guys understand, so it MUST be a "mom" thing:-)

Yes, we have to get these kids connected. Matt is really into computers (he works for dell) so his is always on.

I wish there was a place for pictures on here. It would be nice seeing who we are talking to:-)

You will never know the sense of relief I feel knowing that I am not crazy, that there are other moms out there that have the same thoughts and feelings.

Vicki

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Dear Vicki

I too,will search for the best, for Niki and i will do it for the rest of my life.

Im sure that you can scan a picture somehow . Johnny v has his photo on and Niki Knows how to do it because she has got a picture of Heather on hers. So Im sure we will work it out.

from your new friend who understand everything you say,

Vicki Williams

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Hi all! YES, it is a Mom thing. When almost every doctor in So.Cal. said, "sorry, nothing more can be done" I was convinced that if I sought out THE best, he'd perform a miracle. I prayed for that miracle day and night but of course, it didn't happen. I ultimately consulted with a surgeon who is considered THE best orthopod in post-trauma leg reconstructive surgery (or some such) in the world. When he, and ONLY he looked me in the eye and said "no, there's no hope of saving the leg. You should proceed with the amputation as recommended" then I could close that door. See, my thinking was perhaps the leg would not be useable now, in 2003, but what about when Katie was MY age: 29 ;) I wanted to make sure there would be no regrets, no what-ifs down the road. I didn't want her thinking "I wish Mom had taken the trouble to consult with more doctors". Then I started researching limb regeneration. So..yes, it's a Mom "thing. Hope springs eternal. Katie may get discharged this week-end IF they can get her phantom pain under control. She is having some wicked times in the leg that is no longer there from the fasciotomy which was performed in an attempt to save it. She has an incredible strength and sense of humor which astounds me. At times, I wonder who's being strong for whom. She can't wait to get her leg and get mobile again. If she is released, I will take her in the wheelchair to the mall for some good ole' mother/daughter window shopping. I have been looking like mad for my digital camera. It's either buried in storage here in California or back in Virginia somewhere but I will definitely borrow a camera to take a pic of this sweet child of mine and post it here. Yes, yes, yes. The kids should connect for many reasons. Would be a good thing for all. This site is wonderful and I am so thankful I found all of you. G'nite from sunny, Southern California B)

Katies mom,

Donna

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