Overnight (Wednesday -Thursday) : A night filled with some rest, times of turning from side to side, and complaints of pain in the tummy as well as the back. Finding a comfortable position was challenging, but throughout the night we managed to find positions that worked for a short while so Ella could sleep. Thursday, 12-14-17 : Today was moving day. Ella was transferred from the PICU to the Neurology Floor. With all of her machines and me following behind with her wheelchair, we made the trek from the 16th floor to the 19th. We were no more than in the room and hooked up when the Orthotics Team came to make a casting from her in order to make her specialized TLSO (body brace). The team slipped a cloth onto her like one might slip a cloth onto a rolling pin. The cloth encased Ella from the neck down right past her hips. Then they applied casting gauze; manipulating her body and pushing on the bed as they rolled it under her back. We waited a few minutes as the cast hardened and...

12-13-17 @ 1:00 pm: No position is comfortable. No words are reassuring. No relief has been reached. We traverse on the first 24 hours after surgery and pain management has taken a downward spiral.   Ella will remain in the PICU for another 24 hours. New meds and an increase in current med doses, change in rates, and tweaks of frequencies have been ordered by her pain management team. They are paying close attention to her hemoglobin as those numbers have dropped while at the same time monitoring her tachycardia (she has an increased heart rate alongside low blood pressure). With all the increases in meds and new ones introduced her respiration has slowed down a bit so we watch that as well. She has gotten very little sleep, has eaten nothing, and is allowed only small amounts of water.   This has been, without a doubt, a very trying time for us. It's difficult, to say the least, not to be able to provide comfort for her especially because she is asking ...

Through the generosity, encouragement, and support of so many people we were able to purchase Ella her new wheelchair that will stay with her for many years to come. Currently she is in the practice stage of this wheelchair but she is doing great! We are so very grateful that we have such a great community of friends and family surrounding Ella.  Thank you all... Take a peek---

As Ella grows older her needs change, mature, and expand. She’s at an age where she wants desperately to explore her world yet access to that world is hindered by SMA. Her power wheelchair gets her around most places but also confines her to certain places. She very rarely, if ever, goes to a friend’s house to play because of her power wheelchair. Just getting it into a house can be an ordeal. Even when friends come over to our house they have to stay on the first floor. Ella has a small manual wheelchair but she has outgrown it and she also cannot move it over carpeted areas (like our basement).  Just recently we discovered a lightweight, collapsible manual wheelchair called the "Zippee Zone" with a separate device with a power wheel that can attach to the back of the wheelchair to move the wheelchair along (called a “Smart Drive”). Unfortunately, insurance will not help pay for this chair, as they pay for her power wheelchair. If we purchased this manual wheelchair and dev...

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...