what frustrates her, but for now, she's our wonderful little girl. We recently had a follow appointment with one of our favorite doctors (Dr. Kathleen Roberts) and the report says we were in the appointment for 105 minutes (almost 2 full hours)...she is so wonderful and really takes the time I need to cover all the details of Ella's progress.
Here are some words and phrases that she used to describe Ella's progress, diagnosis and needs. I'll try to include explanations so that we can all understand what she is saying.
"obvious motor impairment"-doesn't really require explanation. Ella has the motor capabilities of a 1-year-old. They won't move that age up any further until she can stand and walk unassisted.
"relative microcephaly"-a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex. (she has a small head, but God graced her with a head of full curly helmet hair and no one would ever notice that her head is small, even us)
"some residual strabismus present"-her eyes still float out, they have a difficult time staying in alignment.
Neurologically: "brisk deep tendon reflexes in the upper extremities; the left being much greater than the right, and also in the lower extremities she is brisk", "tone is low throughout her truck bu increased in her extremities" (she is really loose in the middle of her body and gets tighter as you get out to her fingers and toes, you should feel her grip her hair or kick her feet). "There is some asymmetry of tone noted as well", "strength is diminished and asymmetric" (her left side is more controlled than her right side)
Her language skills remain at about a 14-15 month level. She just did a new speech re-evaluation with her therapist at OCH so I'm going to see what she thinks about this age. We have noticed that Ella understands SO much more than she can communicate. Last night I asked her "where is the baby?" 3 different times and ever time she scratches my stomach and when I told her to "kiss the baby" she leaned down and put her mouth on my tummy, she even "sang" to the baby, but I'll have to get Joe to record all of this...it will be fun to watch and see for me AND for you (whoever "you" are).
Final Impressions:
Ella is a sweet little girl who has mixed cerebral palsy with features of predominantly right upper extremity spasticity (tightness) and otherwise extrapyramidal (neuronetwork) features including hypotonia (low muscle tone) through the trunk. She also has oropharyngeal dysphagia (swallowing disorder) and has graduated from her gastrostomy tube. She has made some nice progress with regard to feeding overall. She does appear to have some intellectual disability as well.
Diagnosis:
- Cerebral palsy (an umbrella term encompassing of a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement)
- Encephalopathy (literally means disorder or disease of the brain. In modern usage, it does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses)
- Feeding difficulties
- Cortical visual impairment (form of visual impairment that is caused by a brain problem rather than an eye problem. the latter is sometimes termed "ocular visual impairment"...which they have tested Ella for without being conclusive that the has... when discussed in contrast to CVI. Some people have CVI and OVI as well...Ella may have both, but none of her visual exams have been 100% conclusive. She does receive vision services through the school district and we LOVE our therapist so we hope she continues to receive these services)
That's all I can think of that is news, so if you have ANY questions please feel free to ask them!!