Archive for June 2014

 
 

6/25/14 – Ortho

Ren had an appointment with orthopedics last week.  We hadn’t met with an orthopedic surgeon since being in Ohio, and this was our greatest area of concern — you know, because of her hip coming out of her socket, her leg length discrepancy, her metal plate in her femur, and her fractured growth plate in her knee.  When we first met the doctor, he basically said, I am not sure why we are meeting.  He claimed that none of her films from Wisconsin had made it there, which was quite frustrating.  So, she had new x-rays done on her femur and her knee.   Here is  a summary of what he told us:

1.  If her hip is coming out of her socket, leave it.  It does not do any good to have surgery to put in back in place, because the muscle tone of individuals with SB is weak, and it would probably just come right back out again.  And, he basically said he never would have done the hip surgeries in the first place, because of that very fact.  We heard this from another orthopedic surgeon as well, in Wisconsin, after the surgeries had already been done.  These very surgeries that caused all her fractures, which caused her to need a metal plate in her femur, which caused her fracture in her growth plate in her knee, which….

2.  The fracture in her growth plate in her knee has caused the plate to….stop growing.  I asked if this means her leg will not grow, and he said no…but it could cause her knee to become “deformed.”  Oh, that’s all, that is fantastic.  It also could make it pretty much impossible for her to be fully ambulatory, full-time, because the stress on that knee would be too much.  Now, he did say that because of her weak hamstrings and thigh muscles, particularly in her right leg, she may not have been able to do that, anyways, but we are not happy with the fact that the fracture will make it even less likely.  Today, Ren said to me, “Mom, when I get older, I am going to walk, ok?”   I smiled, and said, ok, hoping she would prove everyone wrong.  The doctor said that for now we just continue to monitor the knee, to see if any further complication arise.  It could cause some, it could not.  Please pray for not.

3.  The metal plate in her femur.  The removal of that thing has been an issue of great controversy between T and the original surgeon.  T insisted he did not want to risk another fracture, and so did not want it taken out (all her past fractures occurred right after surgeries, due to the weaker bones becoming even weaker from lack of weight bearing when casted).  I understood his stance, but also didn’t necessarily want metal inside her, and also feared that it would weaken the femur bone, as was mentioned by the surgeon.  However, THIS ortho guy said, at this point, leave it in.  It would be very complicated to try to take out now, because the bone is growing around the metal.  Plus, there have been studies now that show that leaving metal in a child does not have any negative effects, according to him.  SO, that settles that.  T was happy.  (And I was ok too)  :)

4.  The leg discrepancy.  I guess it is somewhat common in kids with SB, and is not much of a problem, because it can usually be remedied with bracing.  She currently has a leg discrepancy of about 1 cm, and she has a little lift that she wears in the one shoe.  So, that too shall continue to be monitored.  Oh, also the hip coming out of its socket probably has something to do with it as well.

5.  She had a bone density test that day as well (it was ordered because of all of her past fractures), and that test turned out just fine.

 

So, that was our appointment.  It was informative, yet frustrating – because it made us annoyed once again, reminding us that the surgeries that caused all of her fractures probably should not have been done in the first place, and she could have avoided many of these problems.  But, since there is nothing that can be done about that now, we must move on and do what we can to help her.  And pray that her growth plate fracture does not cause any complications.  And that it does not make her knee deformed.  And that she can still be able to walk with arm crutches.  Even if she has to use the wheelchair for long distances, I still hope she will be able to walk like she wants to walk.

Recently, one of her brothers said, “Will Ren be able to walk some day?”  And I said, “Well, maybe she will be able use arm crutches someday.”  And Ren said emphatically, “And my WALKER!” as in, duh, I am already walking!   And she is doing a nice job with her walker.  She is using it to walk outside on the grass, walking all over the place, strengthening her legs.  Maybe she can still prove the doctors wrong….

The praises:

*Ren has been seizure-free for almost 2 years now.  They may consider weaning her off her seizure meds soon…..or at least try it.

*Ren’s speech progress continues to amaze us.  A year ago, she was six years old and had the speech development of about a 3 year old.  Now, she is seven years old, and her speech development is at about a 5 year old.  This is totally my own observation, from what I know about speech development, and listening to her conversations between her and her 5 year old friend, but I have been pretty accurate at guessing this in the past.  The point is, she is closing the gap.  Hopefully one day the gap will be closed.

*  Ren gets to go swimming in the pond here, and I don’t have to go in with her!   Ok, that is selfish and lazy of me.  But, it shows her growth.  Granted, I put a small life jacket on her, and make her use a noodle (her dad does not, though, as I learned yesterday), and we still have to supervise her (even without SB we would, she is only 7!), but she doesn’t tip over like she used to when she was smaller.  She has figured out how to keep herself balanced enough, or maybe it is just because she has grown.  Regardless, she is able to do it.

*  That Ren continues to also amaze us with her life.  We are so honored and privileged that we are allowed to have her in our lives.

The prayer requests:

*  You guessed it – Please pray that the fracture in her growth plate in her knee will…..not cause complications…..and even better….perhaps even be healed.

*  Continue to be seizure-free

*  Continue to close the developmental gap in her speech

Thank you for all of your support.  I am on a SB forum on Facebook, and the things that people say about what other people say about them or their child with SB…..I must just be surrounded by wonderful friends and family, because the people I know have only said wonderful things about her, and have been so supportive.  I suppose there may be people who think un-nice thoughts and just don’t say anything, but I suppose I am glad they don’t say it.  Especially around T – He would NOT deal well with those people. :)

In closing, (with pics afterward), here is a bit of Scripture from John 9, for reassurance that her disability may be allowed to come forth, for a pretty good reason:

“As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.”

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