Ella watching herself in the mirror as we waited for the doctors at the MDA Clinic.
Dr. Silver wanted to see Ella four months early based on what we reported to him regarding the regression we have seen in Ella.
Dr. Silver runs the MDA Clinic at Shriner's Hospital in Chicago, just outside of Oak Park, Illinois.
This clinic is set up like none other we have ever seen or heard of. Patients are scheduled all at the same time, 1:00 pm, and each get their own room in the MDA Wing. After everyone is weighed, blood pressure is taken, and height is measured, the "rounds" begin.
Doctors, nurses, therapists, specialists, residents, students, and professionals rotate from room to room, popping in and out as necessary. Working together under the same umbrella of caring for each individual child in each room. They bounce ideas off one another, collaborate with each other, discuss, listen and include family opinions while problem-solving. They create an atmosphere of shared goals, shared functionality, and shared respect. We felt part of a team that had Ella as the center of attention...no one person was looking for credit...all were looking out for our daughter.
Doctors, nurses, therapists, specialists, residents, students, and professionals rotate from room to room, popping in and out as necessary. Working together under the same umbrella of caring for each individual child in each room. They bounce ideas off one another, collaborate with each other, discuss, listen and include family opinions while problem-solving. They create an atmosphere of shared goals, shared functionality, and shared respect. We felt part of a team that had Ella as the center of attention...no one person was looking for credit...all were looking out for our daughter.
We walked away with so much information. We walked away with mixed emotions.
They helped us decide on the best type of equipment for Ella. They looked at her current functioning, introduced their expertise with SMA, and tried to anticipate her future functioning capabilities. We have a clear direction of where we are going. The "demo" micro-wheelchair she has now must be returned tomorrow (Tuesday) but we know this is one of the chairs we will get for Ella. We all agreed that a power wheelchair is in her immediate future as well...she will be evaluated for that on Tuesday with Marianjoy Rehabilitative Hospital. We also decided that a power stander would not be a practical option for her, although it was a consideration. We will be getting her a stationary stander so that she can bear weight on her legs.
We learned about techniques to help her with everyday functioning--such as better ways to help her feed herself, improved positioning for play, and ways to help her cough.
Her orthopedic surgeon, Dr. Smith, examined her and felt that we were doing a good job with her thus far. He let us know that her spine is developing a curvature due to her weakened muscles. While scoliosis is typical in kids with SMA, it's usually not a concern this early on. He did not feel that she needed any intervention at this point, but is using his findings as a baseline.
Dr. Silver entered the room toward the end of the 4 hour visit. We told him about our observations and feelings of concern. He examined her in his usual way; with the utmost care and impeccable bedside manner. He spoke with us with the frankness that we are appreciative of and told us that while Ella is a Type 2 SMA patient, he now considers her a "severe" Type 2 SMA patient. He further explained that this means she is part of the 20% of Type 2 patients who regress rather quickly early on. He expects her to plateau...until then he'd like to see her every three months as opposed to every six.
He instructed us to make an appointment with a pulmonologist now, rather than his initial recommendation of later (which was based on Ella's presentations just one month ago) so that we can make sure to keep her respiratory system as healthy as possible...this is critical to her survival.
We left feeling mixed emotions. On the one hand, we hated hearing about her spine curvature and more-so about her being a "severe" Type 2 SMA patient. On the other hand, we gained more confidence, more knowledge, and more insight into how we can best help her live her life than we have since we first had concerns 6 months ago.
Amidst the mixed emotions, one thing rings loud and clear...our gratefulness for the incredible group of people that we met today who will be Ella's Team; for the opportunity to be a part of that team; and for the knowledge and comfort that goes along with it.
Tomorrow we will write about the Marianjoy Rehabilitative Hospital and her power wheelchair evaluation....
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| Ella proudly sporting her new Cubs hat that she got from the MDA Clinic |
