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Thread: Shriner's appointment

  1. #1
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    Default Shriner's appointment

    Kathleen had her gait analysis at Shriner's yesterday. They were all so good with her and made her feel so relaxed and comfortable. It was a long day but worth it. The technology is just amazing. They did a lot of measuring range of motion and strength. Took lots of pictures and then they attached lots of wires and reflectors and video taped her walking. She looked like the bionic woman. We met with the dr. and after examining her he suggested surgery to lengthen her heel cord and surgery that will straighten her foot. I forgot to ask for a name of the surgery but it involve freeze dried bone and pins in her foot. Also 6 weeks non weight bearing. That part will be tough ,I haven't figured out how we'll work with that. Getting her around and bathing and bathroom... The Dr. will have the full results of the gait analysis in a few weeks and that will tell him if there's any issues further up her leg that need o be addressed. At that time he'll call us and discuss it all over the phone more in depth. I'm sure by then we'll have more questions. One big one I thought of is will the cast be waterproof? The dr. was awesome and we felt very comfortable. He explained the surgery well but I think at some point I "zoned" out. It's a lot to take in.
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    Wow, amazing what they can do now in terms of analysis using technology. Nick had his heel cord lengthened, but then just cast and he never walked so the immobility wasn't an issue. Keep us posted and hope you guys are having a great summer! x Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Wow, sounds fascinating how they can do so much with technology! I agree though, I would be overwhelmed also. Sounds like a major decision for the surgery. How heavy is Kathleen? Would insurance pay for a portable potty to rent while she recovers? My neighbor was in a bad car accident and that is how I met them, brining over a meal....anyway, they had a hospital bed and a rolling potty in the living room while she was immobile since their bedrooms were on the second level. (PS, this was 12 yrs ago and she is fine and walking now!) After Caitlin's hip surgery, we did get a special rental wheelchair...you could probably get one of those for mobility. Does having her foot turn out impact her walking a lot? Caitlin has a foot that does that and it seems to drag a lot. I never knew they could fix that! Good luck with all those decisions and hope you are having some fun too this summer! (((hugs)))

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member andromeda31's Avatar
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    ooh, I forgot, if you are worried about washing after surgery....this is what I ordered from amazon for Caitlin. http://www.amazon.com/gp/product/B00...ilpage_o00_s00 I will let you know how it works! For the bathing, I plan to smuggle home as many of the sponge bath wipes/kits as I can. :) Those work pretty good, they have soap built right into them. We have used them in the past when Caitlin had other surgeries.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    I had heel cord lengthening. It was pretty easy for me. I don't remember if I was weight bearing then. I can see from the picture why they want to do foot surgery. I was going to have something done on my feet but we found out later that what they wanted to fix was a much simpler problem that did not require surgery.

    Does having her foot turn out impact her walking a lot? Caitlin has a foot that does that and it seems to drag a lot. I never knew they could fix that! Good luck with all those decisions and hope you are having some fun too this summer! (((hugs)))
    My feet drag sometimes. It is important to remember that nothing is wrong with the bones themselves, it is just muscle tension for both girls(at least that was how mine was explained unless the bones have shifted). Would having surgery help Caitlin with function? Or just help it "look" straight? That's an important thing to ask.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Thanks everyone! Donna we're having a great summer so far. Trying to stay active.
    Lisa, Hopefully we'll talk with a PT before surgery and line up any adaptive equipment we may need. She has a wheelchair already but it doesn't have a elevated leg which she will need. I know of a few others who've had the surgery for similar issues with their foot. They were all stroke patients also. I would not have know about this if I didn't talk with them. Her physiatrist and orthopedic dr. who is great but mostly a spine guy never mentioned this as an option. Kathleen's foot drags and turns out but rolls in. She has no arch at all. It's painful and hinders her walking now. It's gotten worse over the past year. It's painful sometimes also. I did ask if we could get her into the leg brace with just a heel cord lengthening but he said she needs the foot to be straightened in order for it to go into neutral. Getting her back into a brace is my goal because she was so much more stable and independant and could handle greater distances. I checked out that link an that's awesome! There's some other great suff I"m going to check out too thanks!
    Mary

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    ((((((Mary Grace)))))) ~

    Kathleen does look like the bionic woman! I'm so happy that you've found a caring, compassionate surgeon. Do you have any idea when the surgery will be scheduled?

    It shouldn't be difficult to put elevated leg rests on Kathleen's chair. If her current leg rests are removable, then it should be possible to replace them with a pair of leg rests with the elevating mechanism. We did that on Jon's second to last wheelchair. In fact, just for comfort, it might be a good idea for her to have elevating leg rests permanently.

    I didn't realize that Kathleen uses the toilet with her two "devices." Hopefully your insurance would be willing to pay for rental of a bedside commode for a couple of months. Your local medical suppliers might have new ones on sale for $50 or so, in case you think the need might be longer term or of use in the future. Of course, like everything else, bedside commodes are available for purchase on the internet.

    We've been giving bed baths for 15 or more years now. We use plastic basins, and we have a bedside table on which to place the basin, soap, shampoo, etc. In our case, the bathroom is close (en suite), so we don't have to carry the basin too far. Jon's hair is short, so we just wet his head using a washcloth, apply a small amount of shampoo, then rinse with a soggy washcloth. We put a large underpad behind his head.

    Jon's room is set up like a hospital room, so that does make a difference in things like bed baths. But, if it's possible for you to give Kathleen a bed bath with soap and water occasionally, it might make her feel better. Jon is always so relaxed after his bath. Meanwhile, the hospital bath wipes are a good option for daily use. I prefer soap and water, because the wipes leave a residue on the skin. However, they are antibacterial, so they're good for preventing infection, which is why our hospital insists on using them over a soap/water bath.

    I'm glad that Kathleen is getting the help she needs, and that you feel good about her surgeon and the folks at Shriner's. Please keep us posted, as always!

    Prayers going up!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Shriner's orthopedic dr. called us back. He reviewed her gait analysis an doesn't think that she would need any surgery other than the two we talked already. The heel cord and recunstruction of her foot. I asked if there was any other way other than surgical. He said they can try casting but with how tight her ankle is and the shape of her foot he didn't have a lot of faith that it would work. Our family talked it over and feel that the surgery is the way to go to keep her independently mobile. So I called his office back to have him go ahead and get the paper work going and schedule the surgery. I think Kathleen will do great but it will be tough keeping her off her foot. My goal right now till surgery is to get her strong and as healthy as possible. She's doing PT 3 times a week and I try to get her doing something else active everyday. She already eats really well so I don't worry about that. Thank you all for the great ideas!!! I'm sure we'll get through it fine. I just like to plan ahead though...
    On a side note, My husband and I got some real quality time together last night... My son and a friend went to Six Flags NJ yesterday and he called us about 3:30. He lost his car keys on a ride. They searched the ride and never found them. So hubby and I drove 3 1/2 hours each way to drop off a set of car keys. & hours of just us talking, now that's quality time isn't it LOL. Very tired today though.
    Mary Grace

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    Hi!

    Glad to hear she won't have to have additional surgeries! Keeping her strong & healthy before the surgery is a good goal...that is what I did with Caitlin for the spine fusion. I told our PT my goal was to keep her as flexible as possible and I think that helped make her surgery finish up 2 hours sooner than they estimated. :) Will you be able to get the surgery done before school starts?

    OMG about your son's car keys! That would suck! That is a lot of driving, though like you said, good time to catch up with your husband! It is always so tiring to drive so much in a day though. Hope you are able to sneak a nap today!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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