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Heather Mills - Amputee Forum


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About formadison

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  • Birthday 07/17/1974

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  • Membership Type:
    Family Member/Friend of Amputee
  • Amputation Type:
    Below knee
  • Amputation Date:
  • Amputation Cause:
    pseudoarthrosis/ Neurofibromatosis
  1. formadison

    Madison is WALKING!!!! again-

    HOORAY!!! HOORAY!!! she is walking!!!! we went to her prosthetist today and he had changed her socket, definitely for the better- she didn't complain of it hurting her at all. He had it glued to the bottom of her leg- where he had cut it last week, and we will return this week for the finishing of it. Boy she was all over the place when she first walked on it- she had to hold on to something, and still didn't do very well- BUT she quickly improved and even walked out the door- letting go of Daddy's finger, and saying I can do it by myself Daddy- and boy did she- she went right off the sidewalk ledge and went and got in the car- all by herself. We went to lunch after we left and she went in the door and walked up to the girl that was taking orders and said Hey! Hey! I got my new leg today- and she pulled her dress up and showed her- the girl just looked at me not knowing what to say- she was only 16 or 17. But Madison sure was proud of that leg!!! She was so cute- walking around looking like a baby taking thier first steps- she has improved as the day has went on- of course we had to go show the whole family- so she has walked quite a bit- and now I think it is a little sore- she is limping a bit- but even still she is over on the couch right now, watching cartoons, with her leg on- and she never keeps it on, while she is covered over laying down, fixing to fall asleep. I am so happy that this has turned out to be better then we expected!! And she has really growed over the last 3 months- taller, of course we know weight wise- because we have to carry her everywhere we go- but we haven't been able to see her stand in quite some time. I do hope the soreness is gone by morning and she can go play outside!!!! maybe we will go to the park!!! I will definitely be posting a picture soon!!! Thanks so much for your thoughts and prayers!!!!
  2. formadison

    update- surgery for Madison

    Okay- well she seen her ortho and her prosthetist this past Friday. Her ortho said everything has healed up nicely, and he won't see her back for one year. He did do some x-ray's and she has already had new bone growth- started out just as before- almost looks like the bone has been cut straight across then on each side, there isa little hook-like of bone. I sure hope it doesn't grow into a point again- but of course there is noway to tell if it will or not. He said the same thing about walking- like a bike once it is programmed into the brain, it's there to stay- but that it would not hurt for therapy either. I know from past experience with her, that there are a lot of wrong ways you can "walk" so as soon as we get a leg I will call her therapist. Her prosthetist finished her socket while we were there and tried it on her- she was not happy!!! then he took her leg sawed it in half, and glued the socket onto it, she wouldn't even attempt to walk on it. We did have a long day, so that didn't help any, but we will go back tomorrow, and only have that appt. so no long day just the drive there, so she should do better. He said this is going to be hard for her to overcome, and that I do agree with!!! So fingers crossed for tomorrow!!!!
  3. formadison

    update- surgery for Madison

    Well the swelling has finally gone down enough for her to be fit for a new socket- her leg is still new- only worn for a week before not walking- her prosthetist said about 3 weeks- but he might can put a rush on it since he isn't so busy right now- which I like theat idea- beings she hasn't walked in over 3 months. I asked him if he thought she would need therapy again- he said no kinda like riding a bike- but I am not so sure, I think she will need therapy to walk correctly- bend her knee- instead of swing her leg out, things like this. But hopefully she will do just fine. We go back this Friday for a fitting- I have my fingers crossed that when we go there Friday, he will say, okay it's ready for you to take home!!! But of course that is just wishful thinking!!
  4. formadison

    update- surgery for Madison

    I wanted to update everybody- Madison went back to her ortho this past Friday and then over to see her prosthetist after- the dr was just for a wound check- everything has healed up nicely and they want to see her back on August 20th for xray- and then hopefully I can see her actual dr instead of a fill in- at this point I have been told that they did not remove any new bone growth other then the section that had grown to the shape of a spear- this really upstets me, as I do not want her to have to go through this again any time soon. The dr we seen Friday said this surgery was just for the spears not so much overgrowth- but I sure would have thought that they would take advantage of having to be there and by her some time by removing what they could!! this is what we had talked about- you can still feel her tibia bone right at the end of her stump- so I am not sure how long before another surgery!!! Her prosthetist feels she still needs about three more weeks to let some more of the swelling go down- he did give her a shrinker sock to wear, but regardless we will see him in 3 weeks- right now she will not even talk about wearing her leg- she is afraid it will hurt her- so not sure how that is going to go- but I am sure once she sees it doesn't hurt her then she will be fine!!! Has anyone else had their bones grow into the shape of a spear- or grow pointy??
  5. formadison

    Happy Birthday Tammy (forMadison)

    Well my day has come and gone- and I just now seen this post- thanks to all of you!!! It was a great day- and now Madison tells me Happy Birthday- everyday- wasn't as bad turning 30 as I had predicted- but glad I don't have to deal with it everyday- like Madison thinks :D !!!! Thanks again!!!!
  6. formadison

    update- surgery for Madison

    Well the pain is seeming to get better everyday- thank goodness- she doesn't have any bandages on her stump now- it was only held together by steri strips- but all of those came off today. We were supposed to leave the cast on with all the gauze wrap and all- until Wednesday a week after surgery- but I took the cast off a little early because of it being so uncomfortable- and then we took the rest of the bandages off today and within about two hours the strips went from not even beginning to peel, to completely off!! she does have a stitch that goes in one side of her leg and out the other- not tied or anything- just going straight through the leg- not sure why that is like that- I think I will call the dr tomorrow and ask- she won't go back to see him until next Friday. It does still have some swelling and some discoloration that was under the steri strips. The cast was to keep her leg from bending and for protection- we all know how kids are!!! Well I will keep everyone posted as the days go by- hopefully she won't be afraid to put her leg back on- she told me today that she didn't want to wear her leg no more!!! I am sure once it heals she will not feel that way though!!! Tammy
  7. formadison

    update- surgery for Madison

    Hi everyone- thanks to Debbie for posting about Madison, I appreciate it- I actually had tried to post before- got almost done with it and the power flashed off and back on- I lost all I had wrote- very frustrating!!! Well as you all know she did have her surgery last Wednesday- it was pretty rough, she had more pain this time then she did with the original amputation. Thankfully she is better now- she slept all night long last night- first time since surgery. She had a cast from her hip all the way down, that was supposed to stay on until this coming Wed, but I took it off already because it seemed it was causing her the pain she was having- and she got alot more comfortable when I did take it off. Her leg looks pretty good also, they used the steri strips instead of stitches- and I am sure they will start to dry up and fall off within the next few days. She can get in the tub on Wednesday to. Well I will keep everybody posted- she went to sleep earlt tonight, and my husband just come and got me and thought I needed to check her- seemed she was sleeping to sound- but now she is awake, so I better turn my attention towards her and Shrek which I have seen atleast 20 times this last week!!! I told him she is still trying to get herself back to normal!!! I feel like telling him- he needs to watch Shrek !!!!!! One thing I did want to share- I had been talking to her the week prior to her surgery about what they were going to do and all- the night before her surgery my Dad asked her "what are they going to do to you tomorrow?' and she told him "they are gonna take my bone out" then she said "my leg is like chicken it has a bone in it" too cute-
  8. formadison

    Make Josh`s Day

    I was really hoping you had the chance to post- I am glad to hear things went well- Also it definitely has an affect on their brothers and sisters. my son, who is 13 wrote in his journal- that he would give both of his legs, if Madison could have her leg back. It has an affect on the whole family- but I know you all will do just fine- Josh has an amazing support team! As of yet, I don't think Madison has had any setbacks from the amputation- she can do everything any other child can do- even run- well she kinda gallops because her ankle doesn't bend- Well except maybe now- waiting for the revision surgery- it is rough not being able to walk- one more week though- then we just have to wait for healing time. Get some rest- Lots of thoughts and prayers, for your whole family!! Tammy P.S. Our package is on it's way- my son drew him some really neat pictures!!!
  9. formadison

    update- surgery for Madison

    Well- good news- the surgery has been moved up to July 7th, which is better then the 28th. I called her dr's nurse and told her to please inform me of any cancels- I would take anything- she called back the next day and said they could move it up!! Her little knees are so bruised- it has been a long time since she has had to walk on them- and before it was colder- so she had pants on. Well thanks for the thoughts and prayers!!!!! I'll post after the surgery to let everyone know how things went!!!!
  10. formadison

    update- surgery for Madison

    Trying to add a pic of Madison enjoying her little pool- she loves the water- so swimming is always an option for her!!!
  11. formadison

    update- surgery for Madison

    Thanks to both of you- she will continue to have the surgeries until she stops growing- it has been 20 months since her surgery- she was slow growing- but then had a growth spurt where she grew 5 inches in 5 months- so we felt it was getting closer- but of course they won't schedule the surgery until she absolutely has to have it- which would have been okay if there wasn't such a long wait. We tried her prosthesis again this morning- she will NOT wear it- partly because she is afraid to try it- even starting fresh on a new day- but she doesn't forget anything!!!! She is to little for crutches now- but I know we will be able to use them in the future-
  12. formadison

    update- surgery for Madison

    Hi everyone- well Madison has reached the point for her first revision. She has overgrowth of the bones in her stump. I was amazed at how fast it happened- over the last month or so she would complain every once in awhile but nothing major- then this past Sat. she would scream everytime she tried to put pressure on it, so I took her to her ortho on Tuesday and had an xray done- her bones have grown like a spear, easy to see why there is so much pain. The thing that really upsets me is her surgery can't be done until July 28th- so she will spend the better part of two months in a wheelchair. I did go back to her prosthetist today to see if anything could be done for more comfort- he cut a hole where her bone is to relieve some pressure, and gave her more padding- but she still refuses to walk on it. I am really hoping for a cancellation so we can get her on her feet sooner then that- the thing that gets me is when her amputation was scheduled it only took two weeks for the surgery- I don't think I could have survived two months of the agony- of Are we doing the right thing?? and so on, that was the roughest part of the whole ordeal!!!! Any ideas on what to expect for revision surgery?? or maybe somebody has some idea of something we could do to get her walking again- also for Eric's mom- after he had surgery for revision was there any problem with getting him walking again?? Any info is appreciated!!! Tammy
  13. formadison

    Baby Elise Rose-congenital amputee

    Hi- I have just recently joined the forum myself hoping to run into another family with a small child that has had an amputation. My daughter Madison was born 10-2-01 and in Oct 2002, had her left leg amputated, just below the knee, due to pseudarthrosis. A complication of Neurofibromatosis. It was very rough in the beginning. The surgery itself was definitiely harder on us then her- she did great. Not much pain or anything- sure not how I thought an amputation would affect somebody. It has been over a year and a half since the operation, it took 6 months of therapy for her to learn to walk. She has had no problems with the fitting of her prosthesis, though she didn't like wearing it in the beginning, until she found out she could walk with it. Right now she is a very energetic two and a half year old!!! she does anything any other child can do- most people can't even tell she has a prosthesis. Other children seem very interested in it!! I was kinda worried about potty training- I thought it would be hard with the prosthesis, but she mastered it very well- by the age of 25 months!! we have not ran into anything, that makes her any different from other children. We have three other children ages 13, 10, and 8. Please email me anytime, if you have any specific questions, about what we have been through so far, I will be happy to answer them. Your daughter is beautiful!!!!
  14. formadison

    Madison's story

    Hi- thanks to everyone for your kind words!!! Madison is a doll- our lives have changed so much since we have had her- we try to enjoy every minute with all of the kids! she is so funny to watch, and listen to- most two year olds are- when it seems like they are learning something new every minute basically. Lesley- that is a great post that you got started for the younger amputees- one day Madison will be able to post there herself!!! until then I will enjoy reading and maybe I can help someone someday- Brenda- what part of Florida are you from- if you don't mind me asking?? we are in Lake City Eric- I read that you had a tumor in your leg that cut off blood supply and caused you problems- did you also have pseudarthrosis?? we were told that this occurs in 1 out of every 10,000 who have NF. Madison didn't have a tumor- but the thinning of the tibia bone then when it broke a joint tried to form- She hasn't had any tumors except for a plexiform tumor on her lower back- but the dr's don't expect a problem with it as it is right under the skin. She does have around 40 or so CAL'S (birthmarks) and a large head- but otherwise fine, so we still do have so much to be thankful for. I hope you are recuperating well from your surgery!!! Thanks again to all of you!!! I am really enjoying this board so much- and I know soon Madison will also!!!
  15. formadison

    Madison's story

    Oh no- I don't mind at all- see how did you do that?? I know you can do just about anything with a computer- but I don't know how to do any of it!!! thank you- Tammy