First, I apologize for the delay in updates. It’s been a hectic week!
Last Friday, I had a routine neurology appointment at the Brigham. Not too much transpired, but the meeting confirmed that I am in need of a new neurologist. After the appointment, I rewarded myself with a visit to a couple of my friends over at Children’s. We try to visit my good friend Eithene whenever we’re in the area. As I’ve mentioned before, Eithene has been hospitalized most of her four years. While we were at Children’s, we also visited Eithene’s good friend Matthew. Matthew was in for an ileostomy to help with his chronic intestinal pseudo obstruction. We brought them some goodie bags packed with books and zoobles – an interesting toy that I had never heard of before Matthew professed his desire for some. We had a wonderful time visiting with our friends (and, of course, their parents!) before we were off to pick up Keith’s brother from the airport!
The next two days were mostly just spent hanging out with Shawn. I love that Keith has this chance to bond with his brother since they see each other so infrequently. Monday, we headed over to have a Norwegian breakfast with our Norwegian friend, Alyson. Although I’m still not able to eat much solid food, what I did eat was amazing and the boys certainly enjoyed the food! After eating, I was beat so I headed to lay down in Aly’s room and – unfortunately – slept through the rest of the party. The boys did have a great time though and got to play some RoboRally!
Monday evening, I spent with my good friend Stefani going over the CD cover and insert that I’m working on with her. Her CD, Hope Rising, should be out within the next month – but more on that later!
Tuesday was a recoup day for me. What does that entail, you ask? Sleep. Twenty hours of it, apparently. But, boy, did I feel better after it!
Yesterday was the first day of Rosh Hashanah so after a frustrating doctor’s appointment with my PCP (where I was told “Sorry, there’s not much more we can do” about my worsening reflux), we headed to the home of my tutee, “T”. We got to meet her wonderfully engaging grandparents for the first time and enjoyed the meal thoroughly.
Because of the holiday, Keith has the next two days off so we plan on enjoying them to the fullest while Shawn is in town. Today, we’re heading back over to Stef and Ralph’s after we pick up the kiddos for them (they’re in Boston for a medical appointment). Tomorrow, we head in to Boston for the day for my pre-op anesthesia appointment. While there, we hope to make a day of it and show Shawn around some of the areas he hasn’t seen yet.
Still Miles to Go 
You basically just flit around like a fairy godmother, don’t you?
pcps are rough ;0( we’ve been kicked out of sooooo many. as soon as they find out how complicatied i am or that i have MELAS they always freak out. The last one was a peds pcp even and we waited 6 months to get in her practice and she reviewed my papers three times then i got kicked out of my old pcp when she sent for my records THEN SHE DECIDED i was to hard because she didn’t know how to write IV orders for D10 (sugar water) ***rolls eyes*** said she was terrified she might kill me. the next dr she sent me too was even worse. drs should trust the patient more. patients know their bodies and in most cases we have lived with our diseases for a really long time and know what we need and when. true there is the rare person who doesn’t know and who might want to do them self in but most people want to live and not be in pain…me i know exactly when i need fluids but they never listen let it go to far then they are like why didn’t you tell us…..sheesh…..