Tuesday, July 26, 2011

Charge It...

She likes to touch.

We call it her "charging" time.  

She methodically places her index and middle finger of her right hand in her mouth and with the index finger of her left hand, seeks (with purpose) a skin surface.  As depicted in the picture above she rests her finger delicately on the desired skin and her body comes to rest, relieving all anxieties and frustrations.  She "charges".  

She'll "charge" on Mommy & Daddy, friends and family, even Sasa our dog.  Often, if there isn't another living creature nearby, she will find a place on her own neck to place her finger, gaining an internal charge, as it were.  It's sweet, endearing and part of who Ella is.

Ella visited the hospital this morning to get her blood drawn so it could be sent to The Mayo Clinic to have chromosome #5 tested for SMA.  The news of positive or negative results will come forth in 3-6 weeks.  

She was as brave during this blood draw as I had ever seen her before.  Once she realized that she was going to get poked, her lip quivered and she fought back the tears, the cry.  The nurse found a vein quickly and within one second had the needle in and drawing blood.  Ella didn't have enough time to react right away but they came--the tears.  She held fast and I held her tight.  Not 15 seconds later, while the needle was still doing its work, she stopped her crying.  She watched the medical tool do what it was designed to do; her brow furrowed a bit.  She looked at me as she sat on my lap, turning her head to catch my eye.  She didn't exactly smile but I knew she felt ok about this.

The nurse expertly withdrew the needle and seamlessly covered the puncture with gauze and a self-sticking bandage.  Ella was naturally curious of these and pulled on them.  We thanked the nurse and found our way to the hospital cafe to rid ourselves of the past moment and look forward to the coming day.

Our pediatrician has put in referrals to our medical group to assemble a team of doctors for Ella at the University of Chicago Medical Center.  We were impressed by the pediatric neurologist that performed her EMG there last week and are seeking him to be our primary neurologist.  From there, we have the flexibility to choose the remaining team members; including a pulmonologist, occupational therapist, orthopedics, and physical therapist~among others as deemed necessary.

We are also in the process of developing a 2.5 year plan with Family Connections, a service that coordinates in-home therapy and support in concert with Early Intervention for kids 0-3 years of age.  We will be meeting in early August with those (PT, OT, Dev. T) who have evaluated (and will evaluate) Ella.  

In the meantime we work with all three of our kids.  We work on loving one another, forgiving one another, playing with one another, helping one another.  We go about our daily lives and do our best with what we have.  

As Ella has often showed us throughout her days, we must also stop and re-charge with one another...

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