Tuesday, September 18, 2012
Back again. Seriously.
So a new friend said to me, "You have a blog?" Yes, I do. I have one, one constantly neglected, yet always here for me. One that I always intend to get back to and only sort of do. I have been super busy with new creative adventures, so I really need to keep up with things here, and make it another part of my business. I also often have more to say than is appropriate for Facebook, where I live most of the time). Things will still get personal because that's how I am. An open book. But there is more too. Pemberlie.] I have finally found a place where my creativity is appreciated AND brings a little much-needed money into the home. I am selling my jewelry and home accessories at one of the many vintage markets in Kansas City's West Bottoms. There are at least 8 markets that I can think of off the top of my head, and I have a booth in the newest one, Brocante Bliss, at 1222 West 12th Street. I absolutely love it! It is so energizing being around so many like-minded people. It is good for my soul and good for my head. It is a wonderful distraction from real life, which is still hard and beautiful all at the same time. Little P is doing well in her therapies for her cerebral palsy, and we got her a new walker to keep her walking going strong. She doesn't need to be held up anymore, which is BIG! I haven't posted about it here, but last summer she was diagnosed with epilepsy, and we have been trying for this past year to get it under control, to no avail. We have been through five meds and two diets to try to control the seizures, and nothing has worked. Just a couple weeks ago, we switched doctors to someone who had been recommended on a special needs parenting Facebook page I am on. He is not a warm and fuzzy guy, but he has a plan but also had some bad news. He diagnosed her with Lennox-Gastaut Syndrome, which is a rare and severe seizure disorder. I cried. He told me that she would never be free of seizures. I cried some more. But just like with the cerebral palsy, it's a little comforting to know what we are dealing with and make a plan, rather than stabbing in the dark like we have been for the past year. So we are changing meds around and have added a new one. Things are changing slowly for the better for her. She also will be having a device implanted next month called a VNS, vagus nerve stimulator. In the simplest terms, it's like a pacemaker for the brain. Since her new meds are working well, I'm excited to see what the VNS does. But I have to keep reminding myself that we are going for relief, not cure. On the other hand, she has never once done what a doctor said she would or would not do!