Thursday, August 20, 2009

Our trip to Scottish Rite

Okay I'm not sure how often I can blog, and it is an adjustment to the whole idea of it all. However there was a 4 day lapse because after returning from Chicago I started to notice that Sascha was warm. Warm turned into hot Monday. After basically dumping my poor sister at the airport, we headed to the pediatrician. A swab later, Sascha has strep. I KNEW swimming with all those germs would lead to no good,(HOSP, Hotel, Airport, Airplane, Taxi-I imagine it's like making out with a hooker). I can go ahead and mention that mommy and daddy have now had their steroid shots to further prevent any issues, like a hooker that crap get around and we were not feeling well either. Every time I hear steroids I panic, I just hope I don't look like a character from Madagascar after that damn shot. But anyway, after a phone call from sister to mom, Mom basically calls from Waco and... Grandma to the rescue. THANK GOD!
After only being contagious 24hrs, we received the okay to go to Scottish Rite Children's Hospital. Yesterday was our first appointment to meet their team of doctors and to always learn more about JDM (curejm.com). Oh did I mention it was also Jazzy's 12th birthday~DRAMA. After getting over the fact that she had to wake up so early to go to her sisters appointment the day started fine. She was actually a trooper, no fun to party at the hospital on your bday. Don't worry I am making this up to her on Friday (Again thank God for grandma & Pop). The appointment was interesting, we found out more about treatments and expectations. At this point we may be looking at 3x a week IV infusion treatments every week, until we graduate to every other week. They will be giving her steroids and a small dosage form of chemo. For how long you ask?? My same question, they really can't give you that ans without seeing some results from the treatments. I heard 3yrs and I heard 5 yrs, I asked her to repeat 4 times and I still can't process it effectively. It's a joke. At some point, I really hope this all makes sense, because right now I feel like it's half English and half Russian. It's not the understanding of it mentally but more the block I see myself putting up. I keep catching myself just looking up while these words and scenarios are being whispered in my ear. Surely they are not talking to me, about Sascha, Well *$#@%, REALITY, they are. Drink anyone? No worries I am still on schedule, not before 5pm, not M-TH (unless company or function), only fri and sat, sun optional depending on how fri and sat went :)~my rules since 1997 (yes, after the birth of Jazmine).
So where are we now? Waiting on some tests from Chicago, comparing notes with both Doctors, then we will finalize a plan, hopefully establish a relationship among the doctors and put the plan into motion with the addition of her pediatrician. They want to administer the infusion fairly quickly, so I imagine we will start the beginning of Sept. Yeah that fast. She will be in the hospital for 3 days for the first infusion, this is to see how she reacts with the meds. The rest will be given at home with a home health care worker. We will speak with Scottish Rite on Monday, and Chicago on Wed. of next week. I will again keep you posted and let you know where we are. Thank you so much for the kind words and compliments about my blog, and of course well wishes for my family.
And just to make you laugh~ Alonzo hasn't been completely into the blog thing. He finally reads it and then calls me to tell me "great job on the blog, I've got some positive feedback", always professional my hubby, "positive feedback-whatever". Okay that same night, picture me lying in bed trying to relax after dealing with Sascha's strep, my parents coming into town, my slight fever, Jazzy's bday drama, Diego well being Diego, and Alonzos horse of a dog's hair falling everywhere, HE then kisses me on the head and says, "by the way on the blog you repeated a section, but I'm sure it's not that big of a deal. I thought you may want to know if you didn't catch it, just in case you want to fix it." Now let's take a moment to pray for Alonzo............................................ the next time this brother wants to critique this blog you may be reading about him on another publication. I had a vision of my new steroid injection giving me the super powers I needed to throw him through the window, over the fence and into the empty field behind us. Maybe then he could play hide and seek with a bobcat. But then he would be okay because he too had the super powerful steroid injection that gave him the same super power to take over the bobcat and then go to work tomorrow, we REALLY need the insurance now more than ever. hehehe Have a good one.

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