Two weeks sounds like an eternity. Two weeks seems so far off.  Two weeks seems untouchable. Ella's first Spinraza dose is scheduled for two weeks from now!! YES--insurance gave her their final approval!! A treatment, that in our minds was far from our grasp; yet we sit in the kitchen talking about what that first injection will be like; we talk about what to expect, how to handle any pain, and ways to be realistic about waiting to see what happens next. In the art of writing there is always the author's intention to lead to a climax, a heightened awareness of what the story is all about.  You would think that this news would be the climax of the "Ella Story"---but dare we say,  dare we venture to ascertain,  dare we challenge the notion...that this is not the climax? This is not the high point for Ella? That this is just the beginning of new and exhilarating chapters in her life?  We hold hope for her---hope for wonderful things yet to come.   ...

I sit in a familiar place...Easter Seals...for Ella's Physical Therapy.  She sits on the floor working hard on her therapy, making the best of what she has...or better put---what she has left.  SMA is relentless as it robs its victims of what they have...that's why the entire SMA Community is so eager to get their child (with SMA) approved for the new treatment drug known as Spinraza.  It's proving, however, to be an uphill battle with insurance companies. Yesterday I spent the entire day with Ella at Lurie's Children's Hospital for her "clinic".  This is where we meet with her team of doctors and therapists every 6 months or so; a team that is dedicated to their patients in so many ways.  Ella's visit went wonderfully.  She's gaining weight, growing, and maturing.  She performed well on her pulmonary tests and completed her first DEXA  Scan (bone density) which set a baseline for her.  The only part of the day that elicited anxiety for El...

Since we last posted the incredible news about the FDA approval of the first treatment for SMA several people have asked some great questions that we'd like to share the answers to... This is a treatment and not a cure for SMA.  It allows the back-up gene(s) the ability to produce more full functioning proteins needed to keep existing motor neurons alive. The treatment cannot reverse any damage that has already been done.  It cannot inspire growth of new neurons either; nor does it increase strength on its own.   The idea behind this treatment is that it could potentially slow down the progression of the disease. It is not designed to stop the progression of the disease.  Many kids during the trials showed marked improvements in motor functioning while some showed less. This tells us the drugs works (or doesn't work) on a case by case basis.   Once we go through the red tape and Ella is taking the treatment will we truly know if this is some...

For years I've taken Ella to her therapies.  Each time I sit and watch.  I watch and wonder why SMA has to exist; why do people have to have such horrible diseases.  My mind becomes occupied with these thoughts so I divert my attention by doing Facebook, catching up on emails, or grading papers. It's been just over 5 years since Ella's diagnosis.  I can remember that day clearly.  After crying, Lindsay and I sat on the floor in front of our stairs (in our old house) with Ella playing innocently in front of us.  We looked at her, not knowing what the future would hold for our family.  We made that promise to each other, the one about not being able to save her but being able to care for her until they find a treatment or cure. I sat, on December 23, 2016, watching Ella work while she was at her therapy session, as I always have.  I decided to check Facebook and the first post that appeared was a shared post from the Cure SMA Organization... "...

Our house is turning into a hospital.  We have medical supplies in almost every room. We've been on a bit of a "recovery roller-coaster" since I was discharged from the hospital a week and a half ago.  I was discharged with a portable Wound Vac for home use (24/7) and I have a home-care nurse who comes every Monday, Wednesday and Friday to change the dressing and evaluate the incision.  My portable Wound Vac It's nice to have a carrying case for the Wound Vac! I was also sent home taking the oral antibiotic, Ciprofloxacin. Unfortunately, after a few days, I began to experience very negative side effects from the medication...extreme fatigue, nausea and horrible dizziness.  By Saturday (11/12), the side effects had gotten so bad that I had to call my infectious disease doctor, and he instructed me to stop taking the Cipro for the rest of the weekend to see if I felt better. I felt MUCH better :) So Monday morning he prescribed Levofloxacin, w...

Well... A lot has happened since my post last Friday about the infection in my foot. It continued to get worse and by Saturday I ended up in the emergency room at Edward Hospital because of a hole that had developed in my foot. The ER doctors were concerned that the infection had possibly spread to the hardware in my foot and/or bones. They called my orthopedic surgeon (Dr. Arndt) and I was admitted to the hospital and started IV antibiotics immediately. They scheduled me to have surgery #4 the next morning (Sunday) to try to get rid of the infected tissue and to see if it had spread (the surgery was performed by Dr. Arndt). The surgery went well, and there were no initial signs that the infection had spread to the hardware or my bones - yay! Dr. Arndt successfully removed all of the dead and infected tissues, and took many cultures to determine which infection(s) were present. All but one culture has come back, and so far I've tested positive for E. coli (not the type t...

An update on my right foot... The surgery that I had back in September was a success! My orthopedic surgeon was able to cut and remove the part of the bone that was causing the added stress to the other joints of my foot. He inserted a new plate as well as seven screws to hold everything in place, which will all be permanent. My bones have not yet started to fuse together, but they will as it heals. I was non-weight bearing for about the first four weeks after the surgery (a little longer than expected, but my doctor wants to be sure that this surgery AND recovery are done correctly). By about third week of being off my foot, I was basically pain free! Two weeks ago, my stitches were removed and I was given permission to start walking on my heel with the boot cast on. Of course I was very excited, as a whole new world had been re-opened to me! It's amazing what we take for granted! A couple days after that appointment, I started developing some pain in my foot, w...