Sorry Guys. I know I've been MIA, but here's a little bit about what's been going on.....
Hi All!!
As you may or may not know, Victoria went to EMMC on Friday, May 21 to the Pediatric Orthopedic Center. During her last x-rays for a urinary tract infection, the radiologist noticed a slight curvature in her spine and suggested we follow up with her Primary Care Physician. The PCP thought there was reason enough to go see a specialist in Bangor. So, since Victoria has an appointment with the Pediatric Nephrologist in Portland on the 19th and this appointment in Bangor on the 21st, I feel Ive covered the State of Maine quite nicely!!
She had more x-rays done and met with the doctor. He pointed out where one of her vertebrae was cut during surgery to get to her tethered spinal cord when she was 5. He also pointed out that she is at a 25 degree angle of curve. He stated that since this is the first time seeing her, and since no one has ever noticed or measured the curvature before, this would be the starting point and point of reference. He would like to see her in 4 months to see how she is progressing and he will now be following her until she stops growing --- usually by 15 years, he stated. Also, 2 of Victorias vertebrae are fused together. The vertebrae are not supposed to be fused and he stated this is in the same area as the tethering happened. He also stated that it isnt uncommon that if the vertebrae are fused in one area, they are fused in another area, but he could not determine that as the x-ray was only done from shoulder blades down. He will be doing a complete xray from the neck down next time we go. He didnt seem overly concerned with the fusion, but can only monitor this as she continues to grow.
He stated she is to continue her activities as normal, but to watch for any signs such as pain in the legs, limited mobility, fatigue, loss of bladder or bowel control, etc. Basically, the same issues I saw with her tethered spinal cord. What needs to be done from here will be determined by how she grows and what happens to the spine. He didnt even go into what could happen as that would be putting the cart before the horse. Why wasnt this ever caught before now with all the xrays and mris shes had --- thats an excellent question that doesnt have an answer. This doctor says they probably just werent looking for it but he didnt know for sure. He also explained that this fusion most likely occurred during the first 10 weeks of my pregnancy so there is nothing I could have done differently.
So, this is where we stand at this time
..her next appointment is in October
.AFTER DISNEY WORLD!!!!!!