Today is the most encouraged and positive that I've felt since that dreadful day of Ella's EMG in July, when our worst fears were confirmed that she indeed had a serious problem.
Over the weekend, we sent an email to Families of SMA, requesting a packet of information (as suggested by Dr. Silver, her neurologist who performed the EMG). Today we received the packet - a wealth of information on SMA, resources, and support groups. It will take quite a few days to get through all of it!
But not only did FSMA send us information packets, but a care package for Ella as well! And not just a little box with a few toys, but a HUGE box filled to the brim with things that Ella can enjoy, recommended by other families who have children with SMA Type 2! Some of the things included are a baby/toddler swing for the backyard, a Bumbo chair, a beautiful hand-made quilt (made by a grandmother of a little girl with SMA), a water play mat, a Magna-Doodle, a sheepskin blanket (designed to be more comfortable for children who do prolonged sitting or lying down), puzzles, books, DVDs, and other toys for her to enjoy! And on top of that, they are sending us a Radio Flyer Wagon!
They also included a 3-ring binder for Michael and I to use to organize all of Ella's medical information and papers. They included divider tabs for things we had never thought of (but that undoubtedly will come up) such as equipment, specialists, and discharge information.
FSMA is also going to help us connect with other SMA families in the area.
To say we've been blown away by the support of this organization would be an understatement :) It's so amazing knowing that we are not alone. Not alone by a long-shot.
But all of that isn't even close to the best part the day...
Ella had her second physical therapy session with her new Early Intervention (EI) therapist, Lynda. She told us about another therapist in EI who is working with a child with Type 1 SMA. This child is being seen by a neurologist at Children's Memorial Hospital in Chicago who has been treating the child with a new drug. And the child is getting... better. Whatever this medication is, it's not only stopping the progression of this child's SMA, it's reversing it.
There is a new wave of overwhelming emotions flooding though me today... hope, support, encouragement, and excitement, to name a few.
We don't know what the future holds for our "Squishy". We don't have a crystal ball. But the unbelievable support that we gotten from family, friends, as well as complete strangers paired with the exciting news that a child with SMA is getting better, brings a little more sunshine to these cloudy days we've been having.
Sweet dreams, my darling...
