Thursday, February 23, 2006

Bone Shattering

After that last post I figured I should let the family all know…

It is time to go see the Shriner’s again…I hate the word surgery and when they throw BONES (meaning four major leg bones) in there it gets worse! We are talking …cutting the bones and turning them so they are straight again. Both femur’s need to twist out and both Tibia’s in.

Muscle transfers are a possibility or maybe just tendon lengthening, I can only pray that we have those options, but when her local trusted doctor goes straight for the bones… I fear the less traumatizing surgeries are not an option. Usually they ease into these things, especially when talking with a twelve year-old.

Botox treatments have been a hit and miss. Something always keeps us from getting in on time…burns, flu, infected pressure sores, deaths, or the SMURF fungus. Each time something sets us back it seems to take a lifetime to get up and running again.

Tater thinks they are scaring her into more Physical Terrorist appointments and more diligence in serial casting, stretching and exercise, I think they are serious. We will see… after we talk to the local ortho surgeon and ortho guy from Shriner’s.

In a way Taters thoughts were right, she is scared enough to let us cast her right leg, her “Good Leg”. Each week we will replace the cast, each cast will stretch her a little more. This is not an easy process, when the new casts are put on it is such a stretch that her spasictity kicks in, for the first three nights it is constant leg cramps. Even with the muscle relax-ers it only takes the edge off. We hope that the leg will stretch out enough so that she will be able to stand tall again, and if not at least we are breaking her bad habit of walking on her knees. So currently Tater is hobbling around with a HUDE red cast all the way up to her thigh.


Blogger Damon said...

How scary and frustrating. Keep us posted. Hugs to you all.

6:05 PM, February 23, 2006  
Anonymous grand J said...

Our love and prayers are with you all, especially T.

7:25 PM, February 23, 2006  
Blogger Princess Sarah said...

Oh my goodness, that sounds awfull, I feel so bad for T she must be in so much pain, God bless you all I will think of you all in my prayers, I love you all so much!

10:26 PM, February 23, 2006  
Blogger Shana said...

A friend in Nursing School did a report on the effects of serial casting/braces-vs-bone lengthening/rotation. I believe the option for this is a last resort but the out come was fact I think I remember thinking..."why not replace, lengthen, or straiten in the first place...seems it would save lots of money and head ache from trial and error...the down side IS the invasiveness of the surger, the casts and pt. needed after...but she is in casts now...and pt is a weigh the pros and cons...If you would like I have a chapter in a book marked for you that shows pics of kids before and after, with x-rays.

7:49 AM, February 24, 2006  
Blogger Heidi said...

Shana …the reason we have not gone with surgeries first, is GROWTH. First growth spurt after surgery can send her back to step one. Her bones grow but her muscles do NOT stretch with the bones. Why not go “natural” keep stretching as she grows and when she is done growing fix everything at once. This last growth spurt and extra weight gain was a major one, her body hasn’t figures out to handle it, hopefully the Botox and casting does its trick.

We have talked to surgeons all over the US, about this before. Mostly they have agreed that we are on the right path (physical therapy, bracing, Casting, Botox). See T uses her extra “tone”, she relies on it. If they cut and lengthen tendons/muscles, they fear she will loose too much tone, like what happened with her hip surgery. I know many parents who have done these procedures 5 or 6 times in their children’s life Span, they spend every other summer recovering. We are still hoping to out this all off until she is 15 or 16…but we want her back on her feet.

9:25 AM, February 24, 2006  
Blogger K said...

Yikes, Poor T. Sending our love and prayers too. Wish we could do something more.

3:32 PM, February 24, 2006  
Blogger Klondike Kate said...

Hugs and prayers. Sounds tough - I'm glad she has such a great family! You're a good mom to worry and work this much to get her the best care possible.

8:55 PM, February 24, 2006  
Blogger Marty said...

Tell T that we are praying for her and we send are love. If there is ANYTHING we can do or help with we would be happy to do so.

11:04 PM, February 24, 2006  
Blogger FishTaxi said...

Sounds like T. is stepping up to the plate. Good for her and great parents. Its amazing what modern medicine is capable of.

2:50 AM, February 25, 2006  
Blogger Shana said...

Text books ALWAYS make things look more glorified than they are...seems I dont remember the barrer of the report mentioning growth...geee that makes sense. Sucks that you have options but none of them seem like the right parents with even a smarter kid...lots of love and great support...prayers and good ol' harrassement of gimmpy T. I know you will make the best choice here and getting Ts input is a good idea she is not your average kid...quite smart and very realistic...Ya know I have your back...front legs or what ya sis and offering a shoulder to cry on or punch when ever you need it...

5:01 AM, February 25, 2006  

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