Yes, it is!

Tuesday, March 8, 2011

I'm So Confused

I sometimes wonder why God entrusted me with a special needs child.  Actually, two special needs children. Ben has childhood verbal apraxia and Jackie has Cerebral Palsy.  There are so many decisions to be made.  And those decisions sometimes become difficult ones to make.  And they often leave me feeling torn. 
Today, Jackie had a follow up appointment with the orthopedic doctor.  She had an x-ray performed to make sure her clavicle is healing correctly.  As you may recall, this was the third clavicle fracture Jackie has suffered on her left side.  The news was good and the fracture healed nicely.  This particular doctor, Dr. Keeler, works in the same practice as Jackie's regular orthopedic surgeon, Dr. Dobbs.  Both doctors are wonderful.  Today, Dr. Keeler and I got on the topic of Jackie's CP.  When Jackie was in-utero, she never turned head down.  She stayed in the frank breech position up until my water broke and we ended up with a c-section.  I knew that because Jackie was in that position for so long, she would be at slight risk of hip displasia.  Due to Jackie's CP and slight risk of hip displasia, Dr. Dobbs took periodic x-rays of Jackie's hips.  Well, I recently read that girls who are breech tend to have a higher risk of hip displasia than boys who are were in breech position.  Dr. Keeler confirmed this was true.  She explained the reason for this was because girls have more elasticity in their joints than boys and as they get older and hormones come into play, the risk increases.  I learn something new all the time. So, this is just something that we will continue to monitor. 
Dr. Keeler then had Jackie walk down the hall so that she could observe Jackie's gait.  She took a good look at Jackie's left foot.  Jackie's left foot has always been a concern for me.  When Jackie was finally able to walk independently, she would walk tip toeing on her left foot.  After therapy did not improve that, Jackie was finally referred to the orthopedic surgeon, Dr. Dobbs.  Surgery to release the heel cord was recommended.  At age 23 months, Jackie underwent that procedure and had a hard cast for a month.  She healed very nicely and we saw an immediate improvement in Jackie's gait and she was able to place her left foot flat on the ground.  Jackie was fitted for an AFO brace after the surgery.  Jackie didn't mind wearing the AFO at all.  In fact, she got to where she would have a fit if we did not put it on her foot.  She was so compliant with it. 
Within a couple of years, we noticed that Jackie's left foot started to look deformed.  Her arch was really arching high and the foot was starting to curve outward.  Jackie was still wearing AFOs at the time but the foot continued to gradually become more deformed and even after adjusting the AFOs, Jackie would still complain of pain.  Dr. Dobbs eventually suggested surgery to correct the cavus (arch).  I wrestled with the decision to do the surgery.  I wondered if I should  wait until she is older. But by then, the foot would be more deformed.  So the surgery was performed in November of 2009.  It was a very painful surgery for Jackie and it hurt me deeply to see my little girl in so much pain.  I couldn't help but cry when I saw her in recovery crying out in pain.  We got through it though and Jackie had to have a full-leg cast at a 90 degree angle for 6 weeks to keep her from walking on the foot.  But Jackie was a trooper and she didn't let that cast keep her from having fun with her friends at preschool. 
Last Fall, Dr. Dobbs suggested that we may want to consider the next phase of the cavus correction.  I though, next phase?  I didn't know that this was a 2-phase surgery.  Apparently, the first surgery was the muscle/tendon surgery.  The second phase would be the bone correction which would help to lengthen the foot slightly. (Jackie's left foot is 2 sizes smaller than the right). So, we made the decision to have this surgery performed this past January or February.  Jackie is becoming much more aware that her left foot is a lot smaller and I was sort of looking forward to Jackie's foot being better able to fit into her shoes.  But, Jackie fractured her clavicle a few days after Christmas which ultimately delayed the planned foot surgery. 
Fast forward to today, Dr. Keeler really believes that the surgery is not necessary.  Really?  I wonder if the first one was necessary.  I want to think it was because Jackie's foot was really starting to become deformed.  Dr. Keeler believes that with more therapy and strengthening/stretching, Jackie's foot would become more stabilized.  Of course, there's nothing to do about the size discrepancy.  The doctor recommended several activities and exercises.  Hippotherapy, ball therapy, and swimming were a few options.  The doctor waffled between whether Jackie needs a new AFO or if she could benefit from an insert in the shoe.  The AFO would give Jackie better stability for her ankle and help her to lift up her foot when walking and running.  The insert just supports the foot/arch and helps to lift the foot when walking.  I think Jackie would be more compliant with the insert as it wouldn't be so obvious like the AFO.  Jackie has gotten to the age where she is more self-conscious and doesn't want to be different. 
Jackie has had an AFO since she was 2 years old.  Over the years, I have noticed that Jackie's left leg is skinnier than the right leg.  I just thought it was because her muscle tone was lower on the left side.  But today, the doctor suggested that the reason why some CP kids have skinnier limbs on the affected limbs is due to the AFO.  Hmm, I just don't know.  I still think the low tone has a lot to do with it.  And the reason why I think that is so is because Jackie's left wrist is skinnier than her left but she doesn't wear a splint on that hand full-time.  She just wears it a few hours a day.
Dr. Keeler suggested casting for Jackie's left hand. Serial casting had been previously recommended but we opted out of it, mostly because Jackie was already going through enough at the time.  The casting Dr.Keeler is recommending is not serial casting. Jackie would be fitted with a cast on her right (good) hand for a month. This would force Jackie to use her left hand more and build up the strength that she lacks.  Dr. Keeler suggested that we do the first cast before Summer starts.  And then do another one a few months later in the Fall.
I told Dr. Keeler that I recently enrolled Jackie for piano lessons.  I'm really nervous for Jackie because the fingers on the left hand are still very weak for her.  The fine motor skills are really lacking on that side.  It was very apparent to me yesterday at Jackie's first lesson that this is going to be a challenge for Jackie.  But I hope she doesn't give up.  Dr. Keeler totally agreed that piano lessons are a great activity.   Unfortunately, with the cast, it would be almost impossible for Jackie to do her piano lessons during this time. 
This appointment today was not at all what I expected.  I thought we were just doing a follow-up x-ray on Jackie's clavicle but I ended up leaving there really confused and unsure of what to do now.  I want nothing but the best for my little girl.  But oftentimes, I just don't know what is best for her.  I feel torn, almost to the point of tears.  Do I go back to Dr. Dobbs to get a better picture of what he thinks should be done?  Should I go with Dr. Keeler's recommendations? Perhaps I need to get another (3rd) opinion.  We consider Dr. Dobbs to be a wonderful doctor and we've heard nothing but good from other people as well.  Dr. Keeler seems really good, too.  I really appreciate her more conservative approach.  I do tend to try more conservative approaches first with most things.  But, I also don't want to compromise Jackie's recovery from CP.  I guess I have a little fear that if I back off from the more aggressive approach, then Jackie might regress. 
I wish I could afford all of the activities that have been recommended.  Hippotherapy is definitely out as it is very expensive and usually not covered by insurance.  I know Jackie would love hippotherapy.  I also need to get her back into gymnastics.  And swimming lessons would be good, too.  Oh, I just need to put Jackie to work to pay for it all.  Just kidding.  
It was so painful for me at Jackie's first piano lesson to see her struggle to even get her left-side fingers to move on the keyboard.  She used her entire body to help her move the fingers.  I wish I could trade places with Jackie.  It really hurts sometimes to see my little girl, who looks so "normal", struggle with the simplest things sometimes.  

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