Update on our latest trip to San Francisco

Kathryn and I just returned from our latest trip down to see Dr. Gupta in San Francisco. Before I give the details of our visit, I'll give some background information.

A year ago Kathryn was diagnosed with having tethered cord, she is very borderline and I'd be willing to bet that 99% of the people who see her don't recognize that there is anything out of the ordinary going on with her. Those that do notice, most likely only notice that she likes to walk on her tiptoes. She, in all reality, is very normal. When she started walking she started out on her tiptoes and just never really came down onto her flat feet. There were other indicators in there as well including the really unsettling inability to feel injuries to her toes. She would shut her toes in the door, more then once losing a toe nail, and she would have no reaction. Her pediatrician also noted that her reflexes were reversed. She went through a series of tests including an MRI and urodynamics and they revealed that her spinal cord is longer then normal and the filum is thickened. She sees a pediatric orthopedic specialist regularly, she has also done OT and PT, but we generally just do her exercises at home.

So, fast forward to now. She has grown a year since her DX and I think she has really progressed. She is very aware of her feet and of how she is walking and standing. She still prefers to be on her "piggies" and if she is running then she is on her toes, it must just be more comfortable for her. She is very physical and is not slowed in the least. (Trust me I can't catch her!) She recently potty trained with relative ease and we are not seeing any of the red-flag kind of things that we've been warned to look for.

At her latest appointment, what I was hoping was to be her last for a good long time, the doc decided that we need to have another look at her bladder function. Her urodynamics last year were not good, but she was also just two and not potty trained so it was hard to be sure that the results were due to immaturity or defect. So, we'll be heading back down to San Fran again in the coming months to repeat the ultrasound portion of the urodynamics. Hopefully the doctor will be impressed with those results and we'll be good to go for a few years.

This has been such a bizarre journey. Kathryn is such a happy, active and extremely physical child. She has no fear and knows no limits- if she sees something she wants to climb, she climbs it. This is definitely not something that we focus on daily, actually since we've done all the "big" testing last spring I don't really think it's something we devote too much thought to at all, other then when we're preparing for a new appointment. I definitely think that we are blessed that Kathryn hasn't had any negative impacts from this, and I'll pray that the only real impact that she ever feels from it is the uncanny ability to run full-out on her tip toes.

Thank you all for the prayers, well-wishes and inquiries about our Miss Kathryn. I'll keep you all posted as we continue along.