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.

Final Day in Chicago

Well we are back on the airplane flying the friendly skies to Dallas. We luckily landed one of the fancier planes where everyone has their very own TV, so with minimal interaction with each other, all is good. What a day we have had, all I can say is poor Sascha. The poor baby was awaken this morning at 6am with a generous application of numbing cream for the “squishy” parts of her arm. She had to give an urine sample and blood sample before her surgery. After the pure trauma of peeing in a cup we arrived to give a blood sample at 715am. We had to wait a little bit b/c some poor ladies kid was about to completely freak out with the needle and she needed ALL the specifics b/c “he doesn’t take to well to the needle”….UNDERSTATEMENT of the century. We just stood in fright, I almost didn’t let Sascha go next, it sounded like some freak science experiment was happening. Apparently they haven’t heard of the numbing cream, thank you Dr. Carter. Of course she went next and watched the nurse do the whole thing, nurse very impressed with daughter not so much with mom~ I still can’t handle all of that…YIKES! Well after being prepped by all 7 doctors on what to expect and what the result would be, all I can say is…BULLSHIT! Excuse my language, but they made it sound like we would walk into the room and Sascha would still be out, then she would wake up and look at her parents with a half smile and sleepy eyes. Kind of like the movies. Okay, yeah no, after pacing the floors for about an hour and a half they called us back. Let me back it up a bit and tell you about the guy who walked us back, a real nice gentleman who proceeds to tell us about how great the hospital is and how his son was here last year. His son was in the hospital for his third open heart surgery. After looking at the anguish on our face and finding out about Sascha’s procedure, I guess he felt the need to put us in our place. There are always people in a far worse position than you, crazy isn’t it.
Walking into the recovery room we find Sascha sobbing in a fetal position with nurse rubbing her back. There was no half smile or weepy eyes. At this point I could no longer fight back the tears that have been wanting to surface since I found out about her condition. When seeing how vulnerable my baby was, my heart was crushed, I have never seen her in pain or so scared. The sounds coming from her little body were like the music an abandoned puppy with a broken leg on a rainy day would make (oh yeah in an alley). At this point I didn’t notice the tears coming from my eyes, I just noticed the puddle it was making. I never once took my eyes off of her, I didn’t see Alonzo’s face but I could certainly feel his heart break. We just sat in absolute silence for 20min hoping she knew how much we loved her and how sorry we were that she had to do this. Finally after another hit of pain medicine she was better. We stayed in the hospital another hour and then left back to the hotel. This is where we packed our stuff and headed for the airport early. We caught an earlier flt for Dallas, we were anxious to head home. After carrying our juicy booty baby around for hours, and sitting in a cab with no air conditioning for an hour we were ready to be home. The flight was perfect, my kids at home were perfect, my sister was in one piece and my house was clean. At this stage what more could I ask for. I will keep you informed with more info as I receive it in the next couple of weeks. We have an appt on Wed Aug 19th, next week (Happy birthday Jazzy). Take care of each other, peace and love.

Day 3 in Chicago

Man are we tired. It feels like we've been here for 10 days. The good news is that the weather is perfect. After walking most of the day we ended up with a snack by the water. Sascha was able to play in the sand and get her feet wet. The water was soooo cold. I couldn't believe people were in the water, I am officially a Texan. You couldn't have paid me to jump in that water. Okay maybe paid me, but certainly not asked me nicely. We met with the surgeon today, Dr. Madonna (cool name). Sascha will get the muscle biopsy tomorrow at 9am. We heard the basics and almost fainted when we heard that they would remove muscle the size of a marble to the size of a golf ball. GOLF BALL?!?!? That's what I said. I had to ask hollow or solid? She said hollow. But still good God, she's not that big. But the good news is she should bounce back after a couple of hours. Apparently it's easier on the small ones. She asked how we have handled anesthesia in the past, which can indicate how she will do. Let's see I threw up and Alonzo looked like he did that first night in Cancun, drunk as hell. Poor Sascha, genetics are a bitch.
We have a flight back home tomorrow night. It was the only non stop flight. They assured us she would be fine.
We finally had our tequila tonight at a Mexican Rest...yummy. Can I tell you something, I'm originally from the hood outside of Chicago, born in the same hospital as Michael Jackson, if that paints a picture. No really. Anyway I almost went back to my roots at the bar. They let Sascha sit at the bar (love Mexican Rests) and I was behind her waiting for a seat to free up. When the couple next to her moved some little 5ft5" preppy shit snaked the seat. Alonzo made a comment of ppl in the city and of course I made a couple more comments in Spanish; just hoping this fool understood so I could go hood on him (I didn't want to look bad commenting in English where the old ladies next to me could understand-my luck they are undercover nuns and it ruins my chance once again for those pearly gates). Man Alonzo is one lucky guy to have married me :). Well nothing happened, our table was called, I got my second drink and Alonzo gets to keep his perfect reputation one more day. Food was excellent, drinks even better. I will let you know tomorrow how the surgery goes. peace and love
Oh yeah if you are interested in more pics I have posted them on facebook.

Day 2

Wow what a day. She did very well with her MRI. They could not sedate her so everyone here had doubts to whether a 4yr can go 30min in a loud machine without moving. They couldn't sedate due to more tests hrs later. She did fantastic and was the talk of the hospital. We were very excited, considering the whole day would be dictated on how well she did with this machine. We then came home and crashed for a couple of hrs. Due back at the hospital at 1pm and we finished at 4:30pm. We were busy the whole time. Totally fell in love with Dr. Pachman and her staff. Super professional and informative. I've never meet a physician so invested from the start. After the end of the day they drew a lot of blood and she just basically fell straight asleep on Alonzo's shoulders. Poor baby she was a trooper. So far we know that the MRI did not show any muscle inflammation at this time. That was GREAT news. She did however show weakness in her neck. Also her hands show signs that she has had this disease for a little while now. Tomorrow we meet with the surgeon and Friday morning we have the muscle biopsy. Friday night we will head back home.
BTW~ The American Girl store was a HUGE hit with Sascha but not so much with Alonzo. He lost about 4 shades of color when he saw the prices. During check-out he didn't look so good. Overall it was a successful day. We are spent. Peace and love.

Made it to Chicago

We are on our flight to Chicago, it hasn’t gone as smooth as I would have hoped. Since when did American go to EVERYONE help yourself, like a buffet at Golden Corral. Go get your ticket, go get your tags, then go drop off your luggage, oh yeah and don’t forget the $15 fee for your suitcase (what the flip am I paying for???). I imagine if you are solo~cool, but with kiddos COME ON! It’s like bend over BAM and hope you enjoy your flight. During all of this Sascha decides the pee pee is coming all too fast. “Excuse me, where is your nearest restroom?” Oh by the way it's in BFE with exploding toilets (6min walk+closed restroom=major problem). In short, we did a potty on the curb. So if anyone saw us, so sorry, I panicked! I did have wet wipes in my purse :).

Tomorrow at 730am is her first fix, MRI, she has to stay still for 30min under a loud machine with no sedation, oh yeah and only one parent in the room. PERFECT! They do not want any medication in her because they will need blood work and other tests at 1pm. Also we will need to extend our stay until Sat., because her Dr. insists on a muscle biopsy here in Chicago. I already went through the story of Princess Tutu, the strongest princess in the world. Our first installment is the princess being trapped in a cave for 30 min in order to save all of the tiny warriors from big animals. She was tutu strong. Are you feeling me yet? I guess princess will need to take a dagger that pierces her bicep? It needs some work. The good thing is, American Girl store is about .4miles away from the hotel. This will be our saving grace. I will keep in touch with more soon...

From the start

Fantastic I'm finally a blogger. Did I even spell it correctly? Anyway, I've decided this is a perfect way to keep everyone up to date about our family and Sascha's new chapter. If you didn't know by now, our little precious Sascha has been diagnosed with Juvenile Dermatomyositis. In short it is basically an autoimmune disease that affects her face with a visual rash (along with hands, knees and elbows). The scary part is she also may/or has the experience with muscle inflammation.
Tomorrow we leave for Chicago and Wed. morning Sascha's has her MRI done for JDM. We are super scared and not sure what to expect. Dr. Pachman is apparently the best in her field dealing with JDM. We get to meet her and her staff in the afternoon. She may be poked for a few hours but hopefully it is something that the great American Girl store can fix for us. She has been wanting that doll for a year now. Sascha isn't sure what to expect on this visit but is super excited to travel without her siblings. She asked Diego if he would be sad and miss her, his response "hmmm, hmmm, hmmm, NO." Her response, "Hmmm, I didn't expect that answer, that makes me kind of sad."
So after I know more we will let you know more. Thanks to so many of you for your prayers and well wishes via text, email and phone. It really does mean a lot. Also if you are in town and Carmen calls you, pls answer, we left her behind with Jaz and Diego. We just hopes she survives.

So in short, Sascha is doing great and still a smarty pants. Diego still loves to play and is full of hugs and kisses. Jazzy is still wondering why her mom is so strict and planning new ways not to clean.
We hope to make this journey through in one piece.
peace and love always
miranda (Doris for you old schoolers :))