First off, I can't believe my blog has almost 5,000 views! That is absolutely crazy. If even one person has benefitted from sharing my story then I am beyond thrilled and it has been 100% worth my time!
Back to the great news...let's start with Carley! She had her follow up with the neurologist earlier this month. Remember that we were concerned she could have a neurological condition, possibly Chiari, causing her torticollis and spinal curve. Dr. Zinn agreed that she looks amazing and said that if he were to see her in a group of other babies her age that she wouldn't stand out one bit. He thinks neurologically that she is a completely normal baby girl! She was supposed to see the orthopedist on February 14th to have a look at what remains of the curve in her spine, but the office closed that day due to the crazy weather and we are rescheduled for April 15th. I will be sure to post an update from that appointment.
More good news...on January 13th I had my one year follow-up appointment with Dr. Bronec. It was great catching up with Joey (our babies were born a week apart) and Laura (super sweet nurse) and of course seeing Dr. Bronec and having good news to share with him. They were all thrilled that I am doing well and we agreed it was a great time to get an MRI in order to have a new baseline, to get a picture of the 'new normal'. This way if something started to go wrong, we could do another MRI and have something recent to compare it to. My MRI was the following week but it took a while to hear back from Dr. Bronec's office about my results. After the last set of snow days, I got a call from Joey.
Let's jog your memory for a bit...pre-surgery I had a syrinx (pocket of fluid built up in my spinal cord preventing most fluid from getting around it and flowing back and forth to my brain) that stretched from C2 (the second vertebrae in my neck) to T2 (the second vertebrae in my back). This is what was causing the neurological symptoms I was experiencing that ultimately sent me to my doctor. In my 6 week post-op MRI, when I was having complications and the temporary leak was found, we could see that the syrinx had already started to break down.
The new MRI last month showed absolutely no signs of a syrinx, none at all, it is gone! Now this doesn't mean I am cured, there is no cure for Chiari, but surgery is the best possible hope for relief from the symptoms it causes and mine has definitely gone as well as it possibly could.
We can't thank everyone enough for the prayers you've said for Carley and I and those who have been there for us and helped more than you will ever know. Please continue to pray and keep in your thoughts all of those suffering from Chiari and for a cure!!
