Dr. visit and Grammy

Sarah's visit with Dr. Khwaja went well. Nothing was revealed by all her testing. Because we can't get an MRI he is reluctant to give her the official Rett Syndrome diagnosis. That's fine with me. We can only do what we can do with her, and avoiding sedation is key for her health. So we discussed her advancing dystonia. The many different types she has and how they are progressing. Have I mentioned how much I despise dystonia?
He wants me to do a trial of Sinemet to see if it helps. She will take it (a pill) twice a day for a month and I should notice changes in that time if it going to be helpful for her. I think it's worth a shot. It is often given for Parkinson's Disease in adults(which is a type of dystonia). So we shall see. I would love for her to have a little relief.
He asked if she has had a muscle biopsy, which she has. It was normal. Of course:)
So she shall see him again in 6 months at which time another EKG will be done as kiddos with Rett often have an abnormal cardiac rhythm and he wants to pick that up if and when it happens in Sarah.

And that was that.




And then we had lunch at the hospital. And then because it was such a pretty day, on the way home we swung by the family cemetary plot. I love cemetaries. This is where my grandparents are buried (on my dad's side). My mom is sort of there too but that's another story for another time :)

Anyway, I never knew my grandfather. He died of a heart attack at age 59 before I was born. But Grammy? I loved my Grammy. She taught me how to skip (around the dining room table). She loved to bring me to visit with all her girlfriends in Provincetown. She brought me to church there too. She used to try and scare me with the vacume:) I loved her Siamese cat 'Choco'. He was always one year older than me. I loved her roses, and her fudge. I loved her house, her kitchen, her yard, her sidewalk. I loved that she couldn't stand back up after sitting down on the rocks at the beach (4th of July fireworks) and she would laugh so hard while trying. I loved that she would stand in her backyard watering her little lawn with a garden hose and her bedroom slippers on. I loved that she had a curtain instead of a door to her bedroom. I loved her hummels. And her spider plants. She laughed a lot. She had dimples. And sarcasm. She missed her husband. She was smart, always doing the NY Times crossword puzzles. She never wore pants. She read a lot of books and wore dressy coats. She loved Ronald Reagan and Vanna White. She flew a large American flag off her little cape house every time family came to visit. She made me feel special.





Me and Grammy coloring eggs




Grammy's 3 grandchildren: me, my brother Jimmy and my sister Alison


Grammy died at the age of 95. I miss her. She spent time with both Jimmy and John, but never knew Sarah. She died a year and a half before Sarah was born. She would have loved having a great-grandaughter. A sweet, blond, curly haired little angel girl. Yes, I wish they could have met.

So Sarah and I visited her grave. It brought back lots of memories. Life just goes too quickly sometimes. I can barely keep up. And I don't want to forget... those things that make me who I am. Because that's where I came from. From those experiences, those people. People who are gone now...Grammy, my mom and Scott. It's good to go back. It gives me strength for the present.




In the coming month there will be bright, colorful daffodils and tulips popping up! It will be pretty ♥