We've only just begun...

Savanna is a super sweet, super cute 18.5 month old little girl.  She will be 19 months when she gets her first cast.  Why does she need a cast?  She has been diagnosed with Progressive Infantile Scoliosis, and casting is a gentle, non-invasive way to encourage her spine to grow straight.

We have had (and will continue to have) so many questions!  Thankfully, I have been able to do tons of research.  There are many families that have already gone through what we are going through, and there is a great outreach program called ISOP (Infantile Scoliosis Outreach Program) at http://www.infantilescoliosis.org/ that has tons of information.

I have started this blog to hopefully answer some of the questions of our family and friends, and also to provide information to other families in our shoes.

A little background on Savanna...  She was a breech baby.  No matter what I did (hips raises, prenatal yoga, rocking on hands and knees, acupuncture with moxibustion, attempted external cephalic version, etc.), nothing worked to get this girl to turn.  I felt her head in nearly the same spot from 30-39 weeks gestation.  Looking at the scoliosis she has, and other issues she had early on such as torticollis and slight plagiocephaly, I believe her breech presentation may have had a hand in all this.

When she was six months old, we noticed a hump in her back on her left side.  She had an x-ray at around seven months, and we found out she had infantile scoliosis.  It was not yet considered "progressive."  The hump we felt is actually where the rib cage slightly protrudes in the back due to the curve and rotation in the spine.  Her curve (Cobb angle) measured approximately 28 degrees with a rib vertebral angle difference (RVAD) of 14 degrees.  Since 80-90% of infantile scoliosis cases resolve on their own, her doctor asked us to come back in four months for another x-ray so we could see if the curve was going to resolve.

When she was 11.5 months old, we went for her second x-ray.  Her curve measured approximately 23 degrees with an RVAD of 12 degrees.  So, all seemed to be going great.  Her curve appeared to be improving.  We were optimistic that we would continue to see improvements, and so we were told to come back for another x-ray in six months.  We figured we would have x-rays every six months until her curve was gone. 

May 2013 - Curve at 23 degrees

We started physical therapy for her around this time to help with unrelated (but maybe related??) sitting up, crawling, and muscle tone.  Around five months after the last x-ray, her physical therapist and I felt that Savanna's curve may be getting worse (or at least not getting better).  However, we decided to really throw everything we had at the scoliosis, in the hopes that we could present her best spine possible at her next x-ray.  I started taking her to the chiropractor once a week during the last month before the x-ray, and we ALL felt that she was improving.

In November 2013, when Savanna was 17 months old, we went for her next x-ray.  I wasn't even worried about the appointment because I felt she had improved so much.  After the x-ray, the doctor came in to let us know the results.  He told us that her scoliosis was now progressive, and her curve was at approximately 43 degrees!  Wow...  I cannot explain the shock, sadness, fear, and helplessness that my husband and I felt.  Maybe if I had prepared myself for this, I would not have been so blind-sided.

November 2013 - Curve at 43 degrees

Her doctor recommended an MRI scan to rule out any underlying issues that may be causing the scoliosis.  If the MRI was clear, then we would proceed to casting.  The MRI scan wasn't completely clear because there is a small syrinx (cyst) in her spinal cord, however, the neurosurgeon who looked at the scan said the syrinx is not a cause for concern at this time.  We will have another MRI in six months just to check on things.

So, we are on to casting now.  From the research I've done, it seems that she may need to wear a series of casts over a period of hopefully only a year.  She'll have each cast on for 6-8 weeks, and possibly have a few days of a break before the next cast.  After her curve improves to a certain point, then we will likely move to bracing for possibly a year.  I am writing all of this before we have even consulted with the casting doctor, so this is all subject to change.

Our pre-op appointment is scheduled for January 15, 2014, and the casting is set for the 16th.  Please keep us in your thoughts and prayers!  We need to make sure Savanna stays healthy, and we need this casting to work!!