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 Ella was the unexpected blood draw. This was ordered in the hopes that Ella will soon be able to receive the new SMA drug, Spinraza. Her team wants her to be ready just in case she is approved.
While at "clinic" the conversation quickly went toward the progress of Ella's request to the insurance companies for Spinraza. Her team told us that all the necessary paperwork on their end has been submitted to our medical group and once the referral is approved by the medical group the submission will then go to our Blue Cross Blue Shield (BCBS) Insurance Company. It's a slow process but there is progress being made in terms of getting through the red tape. We are so grateful for those who work diligently behind the scenes to help things move along.
In the meantime, we have a busy summer coming up. In addition to Potter (our 11-month-old Vizsla) we just recently added a new member to the canine side of our family! It's a pleasure to introduce Ginny (Potter's 9-week-old sister...same parents)! So our plate will be graciously full with two young dogs racing around the yard and going to the dog park on an almost daily basis; full with taking care of the kids' needs including soccer, baseball, swimming, piano and violin; full with getting Ella back and forth to her various therapies; full with Lindsay's work at church getting Vacation Bible School (VBS) up and running, and then turning around and preparing for the fall Sunday School, LOGOS, and Milestone programs; full with a planned trip to Leesburg, VA, to visit with Lindsay's sister and the entire Gibson family (our dogs included!); and full with my summer tutoring program (Casten's Key to Learning) which already has five students (please feel free to pass along the following website if you know of anyone needing summer tutoring--both in-person and online sessions available: http://mrcasten.wixsite.com/key-to-learning).
Our hope is that one more great thing will be added to our busy plate...a summer with Spinraza.
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 Ella was the unexpected blood draw. This was ordered in the hopes that Ella will soon be able to receive the new SMA drug, Spinraza. Her team wants her to be ready just in case she is approved.
While at "clinic" the conversation quickly went toward the progress of Ella's request to the insurance companies for Spinraza. Her team told us that all the necessary paperwork on their end has been submitted to our medical group and once the referral is approved by the medical group the submission will then go to our Blue Cross Blue Shield (BCBS) Insurance Company. It's a slow process but there is progress being made in terms of getting through the red tape. We are so grateful for those who work diligently behind the scenes to help things move along.
In the meantime, we have a busy summer coming up. In addition to Potter (our 11-month-old Vizsla) we just recently added a new member to the canine side of our family! It's a pleasure to introduce Ginny (Potter's 9-week-old sister...same parents)! So our plate will be graciously full with two young dogs racing around the yard and going to the dog park on an almost daily basis; full with taking care of the kids' needs including soccer, baseball, swimming, piano and violin; full with getting Ella back and forth to her various therapies; full with Lindsay's work at church getting Vacation Bible School (VBS) up and running, and then turning around and preparing for the fall Sunday School, LOGOS, and Milestone programs; full with a planned trip to Leesburg, VA, to visit with Lindsay's sister and the entire Gibson family (our dogs included!); and full with my summer tutoring program (Casten's Key to Learning) which already has five students (please feel free to pass along the following website if you know of anyone needing summer tutoring--both in-person and online sessions available: http://mrcasten.wixsite.com/key-to-learning).
Our hope is that one more great thing will be added to our busy plate...a summer with Spinraza.
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| One of Ella's Pulmonary Tests |
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Ella's First DEXA Scan
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