Update on Parker's Spine

{Disclaimer: I promise we love Reagan the exact same amount as we love Parker, but a lot of our posts have been focused around him lately. Don't worry...Reagan gets plenty of love and attention.}

This blog post kind of turned into a choose your own adventure story ...

If this is the first you have heard about Parker and VACTERL Association, start reading at Paragraph One.  If you know all about Parker's VACTERL Association and the past 11 months of craziness in the Even household, start reading at Paragraph Two.

Happy reading!! 

One –

While I was pregnant with the twins, we found out that Parker had a 2 vessel umbilical cord (typically, there are 3 vessels), which can be a marker for VATER/VACTERL Associations.  We also knew while they were in utero that there were some questions on Parker’s kidney structure and that he had 2 hemevertabrae (the V & R of VACTERL).  Because our perinatalogist already knew that there were some markers for possible VATER/VACTERL, she made sure that when Parker was born that the neonatologist at Piedmont did a thorough look over on him…which is when we found out that he had an imperforate anus (not opened), which is the A of VACTERL.  This was the reason he was transferred to Egleston the night he was born and underwent the emergency surgery for a colostomy.  Luckily, Parker's heart, esophagus and trachea look great, which can be the most serious parts of the association.  Every child with VACTERL association looks different from one another and has different physical anomalies than other children with VACTERL do.  If you want to read more about VACTERL, here are 2 great websites about it: http://www.vacterlnetwork.org/; http://www.cincinnatichildrens.org/health/heart-encyclopedia/disease/syndrome/vacterl.htm. 

In the past 11 months, Parker has undergone 4 surgeries, numerous tests, medical procedures and has been to many pediatric specialists’ appointments on top of routine (and extra) pediatrician appointments.   Here is who we see:

-          Urology: Because of his horseshoe kidney and kidney reflux, we have regular follow-up appointments with his urologist and he is on a daily dose of prophylactic antibiotics to make sure he doesn’t get any kidney or bladder infections (This urologist performed Parker’s circumcision and hypospadias repair on 12/16/11). 

-          General Surgery: We see his general surgeon every few months so she can follow his progress and how his “plumbing” is working as he continues to grow and develop.  Dr. Durham is the surgeon who put the colostomy in place on 4/22/11, repaired his imperforate anus on 6/30/11, and took the colostomy down on 8/16/11.  We know her better as the surgeon who saved Parker’s life on their birthday and as the brilliant and amazingly compassionate doctor who walked me through the surgery over the phone while I was still in the hospital recovering from my C-section.  It was no mistake that Parker was placed in the hands of Dr. Durham that night.

-          Orthopedist?: We have not yet seen anyone for his foot.  While Parker was in the NICU, we were told to bring him to the Limb Deficiency Program when he started pulling to stand – which he is so close to doing! – so we have an appointment and consult with the team there on April 17^th.  This consult will tell us if Parker will need to see an orthopedist, have any kind of prosthetic for his foot or if he will need physical therapy for strength and balance.  (see previous post for more on this!)

-          Neurology: Because of his 2 hemevertabrae, his scoliosis and the filum lipoma (fat deposit) at the bottom of his spine, we see a pediatric neurosurgeon to make sure his spine remains stable and strong as he continues to get older…which brings us to today’s x-ray and appointment…

 

Two –

We should all be up to speed now.  So, the Even fam made a trip to Scottish Rite this morning for Parker's spine x-ray.  He had an MRI in October so his Neurologist could get a better idea of what was going on back there (get it? "back" there?) and he wants to do an x-ray every 6 months to see how his spine is developing as he continues to grow.  The bad news?  There wasn't any!!  The good news?  Parker's scoliosis has not gotten any worse, and as long as we don't see any more curvature in his back or see any other symptoms of his scoliosis worsening, the neurologist will continue to x-ray his spine every 6 months for the next year/year and half, and after that will probably x-ray it once a year.  Are there things to worry about in the back of our minds ... possible other surgeries or invasive treatments?  Of course - but what parent doesn't worry??  Right now, we are at peace with the treatment plan for Parker's spine!

We have our appointment with the Limb Deficiency Program on April 17th and look forward to finding out the treatment plan for the cutest little foot on the planet.