Toes, Hip, & Spine

Goofin off in the doc's office - silly little girl

The day started early for me and the wee-bit today.  We had an hour and a half drive to Gillette Children's Specialty Clinic in St. Paul, MN with an appointment time at 8:15am - much better than a four hour drive to Milwaukee, that's for sure!  Height and weight was first: Caity weighs 48lbs and is 43inches tall.  Next was xrays of her legs (for leg length discrepancy - LLD - comparison) and right hip.

Once in our room a resident and medical student came to check in with us first.  They asked questions and examined Caitlyn.  I explained her new CLOVES diagnosis and how her hip seems to have becoming more bothersome over the past year.  She stumbles and falls constantly and after walking or playing hard she will complain that her hip hurts.  I told them that I found this surprising because I had always just assumed her left leg would cause her the most discomfort.

Left: Current  Right: 1 yr ago

Shows she is "knocked-kneed"
this may need surgical intervention

Dr. Sundberg came in to speak with us after the resident was through talking.  He explained that he is not too concerned about her LLD and does not want to do any medical intervening at this time.  Instead he wrote out a prescription to have a lift put on the outside of her right shoe.

We then went on to talk about her right hip.  It is still showing minimal change as far as positioning and condition of her femoral head/socket relationship.  There is still significant avascular necrosis to the femoral head - meaning there is "bone death" due to there being a lack of blood supply to that area.  So it was decided because an xray can only show minimal amounts of data of her hip and her increase in discomfort we will schedule another arthrogram procedure.  This is a general anestesia procedure performed in a surgical suite. Pain/discomfort is very minimal and the procedure only lasts 30 minutes.  Once the arthrogram is done we will discuss whether or not moving forward with a surgery sooner rather than later would be appropriate - I'm hoping for the later. 

Left: Current  Right: 1 yr ago

Current

Current

Dr. Sundberg sent us back to xray so we could get images of her spine and feet.  Her scoliosis has definitely worsened over the past two years.  He is concerned about the sharp curve in her spine.  Although it only affects a small number of vertebrea it is quite complicated due to the way the vertebrea appear to be sitting.  He consulted a spinal specialist doc and it was agreed to also schedule an MRI of her spine.  Either way, no matter how her MRI comes out, she will either need to have surgery to help correct her curve or she will need to be put into a back brace.  I am not excited about this at all.

Looking and palpating her spine

Her feet show definite overgrowth of tissue and bone, which of course we already knew.  But it was

nice to see which exact bones were the culprits of her problem.  He informed me that in some cases there is the option to damage the growth plates in her two overgrown toes on her left foot and if that didn't help then we could consider a partial amputation - or total amputation - of those toes.  The purpose of this would be for comfort measures as well as making buying correct sized shoes a possibility.  The same can be said for her right foot, even though it doesn't have the overgrowth of toes it does have major overgrowth of tissue/muscle.  A debulking of her foot would be very complicated due to the increased risk of loss of sensation/feeling in that foot and/or toes.  So instead, we could do a partial of total amputation of the long (metatarsal) and short (metacarpal) bones of a couple of her toes.  Needless to say, I'm not thrilled about these options one bit.  I wouldn't mind, eventually, doing something about the growth plates in her left toes.  However, right now, I just want to focus on her hip, spine, and chemo/immunosuppressant therapy.

At the end of the day, I am thankful to at least have her home with me; happy and overall healthy.  There are many parents that have lost their children to this disease or similar syndromes  or parents who sadly have yet to take their babies home.  I, at least, get to have her here with me.  So we will take this as it comes and I will continue to try and find the positive in every medical situation we come across.

A special thank you to sweet Baby Forrest for helping me realize that my daughter's situation could be far worse than it is and to be grateful for the many things that I CAN do with her instead of feeling sorry for the many things that I CAN'T do with her.  You are absolutely amazing; from the very bottom of my heart I truly thank YOU for helping me to be a more thankful mother!

And many, many thanks too all of you for keeping Caitlyn in your prayers and well wishes and for finding time in your life to keep track of her story.  Feel free to contact me or share her blog.  The more people that know the better we can raise awareness!