That's what the doctor ordered.
Test her nerves, test her muscles, test her enzymes.
The first test we wanted to get completed was the one that required drawing blood. We went to the lab; Lindsay waited for an hour only to be told that they did not have the "special tubing" required to perform one of the tests.
Homeward bound and telephone bound.
We coordinated with various labs and finally a supervisor ordered the tubing and had it delivered to the closest lab to us. Blood has been drawn from Ella as well as her tears drawn.
Results about enzymes and muscles forthcoming within 48 hours.
We scheduled the nerve velocity test at our local hospital. They seemed hard-pressed to find a doctor who would perform the test on a child so young. They found one. We're not feeling so comfortable that this hospital hasn't performed this test on children Ella's age. The test is scheduled but we will be talking with our pediatrician and her office to locate a hospital that has more experience in this area. The wheels roll on.
All of this organizing and advocating, which is unbeknownst to our three children, has been part of the role that Lindsay and I have been given...we accept.
The role Ella plays in her world is that of a happy go-lucky one-year old with limitations of movement thrust upon her. She is finding what she enjoys, albeit not accomplished in the traditional ways, but enjoyed nonetheless. She plays ball, she plays in boxes, she tears up paper, she makes funny faces. She lets us know when she's uncomfortable or wants to snuggle...she kisses us and nuzzles. She plays with our dog, Sasa. Her teeth are coming in and that beautiful blonde hair is making its debut!
Ava is developing her relationship with her sister in a way that is endearing to witness. She strokes her head, calls her "Sweetie", and gives her toys to play with. She watches out for her and gives her hugs; ever so gentle hugs. She reads with her and helps me when I bathe her. She prays for her.
Henry forges his way forward. He is younger than Ava by one-and-a-half years and the edler of Ella by about the same amount (just a few months more). His understanding of what is happening around him is admirable. More admirable is his reaction to it. As any two-and-half year old does, he struggles with his emotions; his wants and needs, his ego-centricity and the realization that there's a world around him. He continues to struggle with power, autonomy and independence. He does not, however, struggle when it comes to defining his role as Ella's big brother. He certainly has his moments when he gives her a hard time (as expected) yet he also watches out for her.
He lets me and/or Lindsay know when Ella is doing something that may be harmful to herself, or if she has toppled over from her sitting position (at least the times that she isn't pushed over by someone in order to get a toy from her!).
He has done something else that I admire...he has started to develop a great sense of humor. He loves to make Ella (and everybody else) laugh. She loves to laugh, too!
Between the five of us, we have our roles...as any family does. We will learn from one another...as any family does. Switch roles when necessary...as any family does. We'll look out for each other...as any family does.
We will...as Ella opens up the book of her life...turn the pages with her.