Happy New Year! Crazy that it's 2010 already, I could have sworn I was 27 last year. How does this happen? Parents and grandparents, they warn you about this~ how quickly life goes by. It felt like just yesterday when an older gentlemen in a restaurant looked at my three kiddos and said "love this moment because time flies by"... during that moment Jazzy wouldn't stop talking, Sascha was running in circles, I haven't put a bite of food in my mouth and I was still waking up every two hours with Diego, my response (to myself) was "Yeah right, not fast enough!" Okay I take that back (right now).
Several things have happened since I last blogged. Sascha was showing real progress with her pulsing (IV infusions) in Nov, and Dec., aside from dealing with pretty much all the side affects, her numbers were looking good. It's funny how people compare life to a car ride, with all it's twists and turns. I think about that a lot and whole heartily believe it's true. For example, when you are driving and enjoying the view, there are times it may go unnoticed that you have driven through mud. That is, right until some moron comments, "damn when was the last time you washed your car?" God Bless them and the voodoo doll that slightly may resemble them in my drawer. How can a single statement ruin a moment? In other words, I thought I learned how to deal with it all, and appreciate my life all over again, right until I'm found second guessing my position because someone will comment on Saschas new found voluptuous figure, or the rash on her face, or my new found back side ( and I mean the whole back side), thank you, you wonderful chocolate chip soft yet crunchy Pillsbury. Okay, the truth is, nobody I know is that brave to comment to my face about my backside, I'm actually dealing with my own insecurities. Reality.
Back to Sascha, because all of her numbers were showing progression (VERY GOOD THING), in Nov. both parties(Chicago and Dallas) figured it was time to start weaning her off the pulsing. Remember these were "toxic" levels they were giving her and it was so tough on her little body. Now both parties have a different way of weaning. Long story short, in Dec. we changed her meds to a milder form. Chicago would have liked to keep pulsing, just not as much. We didn't go with this method because we do not live in Chicago, we needed to go with a more abrupt form. I had a bad feeling about this all along, but because of the rarity of this disease, it almost becomes a trial and error thing. She is reacting well to the meds. Other than the fact that it is two pills twice a day one hour before she eats/2hrs after, plus another med she needs on a full stomach, and 3 other pills in between. Yeah she is four, goes to school, has playgroups and still takes a nap...WHATEVER...pass the VODKA please! All this aside, we went last week and she still shows no muscle weakness according to her labs. I've witnessed something different. The rash on her face has blown up, the rash on her knees has appeared again, she pedals her bike like she's just learning. What does all this mean? We sit back and wait for the next lab, we give the medicine time and see what happens. I truly leave this in God's hands, please give us the strength and the determination to do the right thing for our daughter. As for Sascha, because the amount of steroids has drastically decreased we are now able to take her out without so much hesitation. It's Sascha, there has always been hesitation. I can tell you there has been about 6 people so far that have told me how much nicer she is. That just makes me laugh, I can't imagine what previous side of her they have seen. Don't get me wrong, she still has her moments. She just doesn't look like she might have a parole officer oppose to a counselor in her future. But she is really awesome and remains so super strong. As for the rest of us, Alonzo has been an awesome hands on daddy (he prefers Tequila), Jazzy is still in her own world + IPOD = lala land, Diego is still learning how to defend himself at home and on the playground. Lonz says if he doesn't know how to take a hit on the football field he's going to freak...friends pls pass him the tequila while his son is dancing hip hop next to his sister. And of course myself, I'm doing great. I'm still laughing, I have 346 new year resolutions. I try to be impressive, before you find out the truth. I will be running my first 1/2 marathon in March, freaks me out. I may even do the one for Myositis in Feb. (of course Alonzo tells me about his one, AFTER I had already signed up for the freakin March one). If you think he's trying to kill me to collect the insurance and hang out with some pretty skirt, pls let me know, call direct! I have friends in Juarez that can take care of that pretty boy...okay did I go too far? hehe
Let me leave you with this, a new year is filled with so much promise. It's a clean slate for everybody to be a better person in about 346 ways (does that number look familiar?). Get nasty and try all 346 ways, you may surprise yourself and those around you. In the last 50 conversations I've had with different people we have covered current events relating to 4 different cancers, 2 deaths, 1 heart attack, 2 miscarriages, possible divorces (won't even tell you how many or who), and the debacle in Haiti. You really never know what's around the corner. Leave negative baggage behind you and open yourself up to love harder. We need this.
Always Peace and love
