Scoliosis and Spina Bifida - yeah, this sucks!!!

I went into this past week knowing that it could hold a lot.  2 major appointments - the hand surgeon and the orthopaedic specialist.  I wanted to think that I (and Jordan) would just breeze right through it and come out on the other side unscathed.  Unfortunately, I found myself feeling hopeful, but ended up pretty mangled by the time I hit the weekend.

The appointment with the hand surgeon went very well.  For the first time in 4 visits, they did not do x-rays.  I was thankful because that was usually what got Jordan upset and anxious during previous visits.  That, along with the fact that the doctor seemed to take forever to come in and see us.  However, he was very quick and we only waited a few minutes before we were able to discuss where Jordan was.  I explained that she has been finding alternative ways to do things - holding a marker/crayon, opening something, pulling up her pants, taking off her socks, etc.  I also told him that there are certain things that she just can't do without the ability to squeeze something with her thumb providing counter pressure - opening some doorknobs, opening some containers, picking up small objects, etc.  

Jordan allowed Dr. Kuz to examine her thumb and he indicated that the weakness was multi-directional and that she definitely would benefit from having it reconstructed.  He explained how he would reconstruct her thumb.  Basically, he needs to increase the web space, stabilize the joint, strengthen the thumb, and then fill in the missing tissue.  Sounds simple enough.  But then the real work begins.  Jordan will be in a cast for 5 weeks following surgery and I need to ensure that she is very careful with her arm/hand during this time.  I wish I could just say this will be easy, but since Jordan's temper tantrums often result in hitting - people, walls, tables, floors...whatever is close by, I can't really guarantee that it will never get "bumped."  

Original post about Jordan's first hand surgeon appointment

We did not schedule the surgery at that time because I wanted to see what the next appointment would bring.  Also, Derrick and I needed to discuss the best time to have this done (when do we want Jordan to spend 5 weeks in a cast followed by physical therapy.)  We are looking to have it done this winter - we are thinking just after the first of the year.

Waiting for Dr. Cassidy

On to appointment #2.  We were going to see pediatric orthopaedics because last spring I had noticed that Jordan's shoulders were uneven - one was higher than the other.  She also began seeing the chiropractor and the x-rays showed a slight curve in her back.  The x-rays done confirmed that the curve was 12 degrees which categorized them as scoliosis.  After looking more closely at the x-rays he also noticed that the top vertabre looked unusual.  He zoomed in and saw that they were not fully connected and said that it was considered spina bifida.

wow.
2 major diagnoses within a matter of minutes.

The doctor pulled up the MRI Jordan had done in June, 2008 and evaluated that as well.  He said the that MRI does show that area and he would review it in further detail.  He was able to rule out significant problems with the spinal column and chairi malformation.  He said there was not much to do now, but that if her curve were to progress to more than 20 degrees, we would need to start treating it.  He also suggested we possibly consider another MRI in a year or so to compare.  

I was not happy with the idea of doing nothing so I asked if Jordan's hypotonic cerebral palsy could be part of the problem with the scoliosis.  After all, if her muscles are extremely loose, wouln't it make sense that they couldn't hold her spine straight?  He said that it could help her to strengthen her core and that her neck could use some stretching as well.  He wrote a script for them and told us to come back in a year to follow up.

I must have been in shock for the first day because I never really thought about what this could mean.  Then after talking with Derrick that night and some of his concerns were expressed, I started to process the reality of it's impact on her life and ultimately, ours.

Then I got online and started to research.  That's when it hit me, scoliosis is the first degenerative medical diagnosis that Jordan has received.  Her cerebral palsy won't get worse, her dysphagia (swallowing) won't get worse, her apraxia (speech) won't get worse, her thumb hypoplasia won't get worse...scoliosis has the potential to cause her significant pain and could continue to get worse throughout her entire life.

Jordan's actual type is called kyphoscoliosis.  This means that her curvature is not just side-to-side, but also front to back.  I have found that the primary age for onset is 10-15 years old so that Jordan is 5-10 years ahead of that average and has a longer time to progress.  Also, her would probably be considered neuromuscular scoliosis because of her underlying cerebral palsy.  Unfortunately, this type often progresses more rapidly and often requires surgery. 

Once scoliosis reaches 20-25 degrees braces are used to stop and hopefully correct the curvature of the spine.  Unfortunately, my research has not shown them to be highly effective.  This lead me to research some of the other "alternative" forms of treatment.  I have found some that I will continue to look into as I am not in a desperate situation right now.  Surgery is not performed until the curve reaches at least 40 degrees and consists of rods and spinal fusion.  Not something I want to see her go through.

I have also found a great website that a girl who has scoliosis has created to help others who are facing the same challenges.  Her story is amazing and I love when I come across someone who has embraced their differences and work to help others!!  Check it out: My Scoliosis Story.    This gives me hope that Jordan could have a positive attitude, but is still more than I want her to have to face.

I know Jordan is an incredibly determined, strong-willed and beautiful child.  Unfortunately, she has no idea what she is up against...yet.  I am sure that as she gets older and when things get hard and as the pain in her neck/back increases, she will be forced to gain a better understanding of what is happening to her body.  I know she is a blessing and I treasure her beyond words, but it breaks my heart to think of what she may endure.  

For right now, I am seeking the physical therapy that may help her to strengthen her muscles and hold her spine in place.  I talked with Jordan's teacher and I am waiting for her to contact the physical therapist and discuss therapy options during school.  Depending on what they can work out, we will decide if we want to pursue outside PT as well.

I have spent the past few days wondering if God has put too much trust in me.  I know He isn't supposed to give me more than I can handle, but what if I don't want what He has given me?  What if I don't want my daughter to have to face any more challenges?  Especially ones that will only get worse!!  

I want to be strong.  
I want to have faith.  
I want to trust.  
But right now I hurt...and I hope that's okay.