Elena's personal timeline, a place to collect and share things from Elena's life.
Created by thedoodle on Jul 13, 2009
Last updated: 03/17/11 at 09:49 PM
Elena reads her first word without help: BIG. She has been able to recognize words and their respective sounds for many months, but has just begun to make those sounds into words.
E uses the potty for the first time, by herself, without assistance, without anyone nearby, at home. She undresses and dresses herself, and uses a standard toilet with no modifications except a stepstool at the sink to wash her hands. She wears her AFOs and shoes. We have been potty training for three years. Potty awareness has been there for well over a year now, but gross motor skills and balance have been a constant challenge.
Elena jumps, without handholds, wearing her AFOs and shoes. Doesn't jump very high, but she definitely gets some air.
We retire her walker. She has been using her posterior walker for "long distances" (bus to classroom, for example) on school days, despite never using the walker on weekends. She now will only have her loftstrands for long distances (and her stroller for really long treks, but this is not available in school).
Elena can reliably stand up from the floor without assistance (surfaces tested: carpet, foam mat)
E starts pre-K at Stony Point Elementary
E gets her first pair of glasses. She is slightly farsighted in her right eye, but the prescription is only for astigmatism.
SDR performed by Dr. Jeff Elias at UVA. E spent 5 days inpatient.
E attends public pre-K program Bright Stars. She is one of two three-year olds in the program. She ends up going a half-day, 5 days a week.
Elena starts public pre-K. Bright Stars is a program for at-risk kids; Elena eeks by to get placement. This program is WONDERFUL!! She gets PT 2x/wk, ST 1x/wk, as well as adapative physical education and playground time in addition to the normal pre-K curriculum.
Not afraid at all!
Elena gets services through the public school system. Opting out of EI earlier than her 3rd birthday allowed us to effectively double-up on her therapies; PT and ST at school (for the rest of the school year), while retaining her private PT at the local therapy center.
She gets really good at using it (in and out of the house, around corners and up/down slight inclines/declines) in about 4 months
E gets two injections per leg; calf and soleus. Same day, after her nap, she is able to put her heels down on the ground for the first time.
E takes a few "controlled" steps (not stepping while falling) under close supervision. Movie: "Anniversary Present"
Finger-painting party.
From first phonecall to actual coverage, including phone interviews, home visitation, and paperwork: 4 months
Can cruise on furniture, falling down in any direction at any moment (falls like a tree, no protective response)
Performed by Dr. Edward Parelhoff (we love him!)
E wears them without shoes, non-weight bearing
MRI scan shows "severe periventricular leukomalacia"--a surprise, given how functional she is
Elena can feed herself (a little, with hands only)
Spastic Diplegia, clinical diagnosis at 15 months
Wide leg stance when crawling (weak core)
She uses objects to prop herself up and into a "W" sit.
E starts signing after approximately 5 months of parents signing to her. First sign:Milk. Second sign (immediately following):Water. What she means: "I'm THIRSTY!" (She was pretty angry by the time I got the message!)
Cake and ice cream. Note toes curling while in ring-sit.
Referred by E's pediatrician. She could stay in a ring sit (if put there) by her first birthday.
Performed by Dr. Bruce Carter. Picture shows "before" appearance. Pre-op diagnosis: 35 prism diopter esotropia. Post-surgery, eyes never really looked better. Bruce insisted they were fine; after several unsatisfying appointments, I went searching for another doctor. I visited four before finding E's current ophthamologist.
Turns over using momentum from extreme back arching.Early back arching like this is a classic sign of spastic diplegic CP.
Elena was allowed to come home after she could tolerate feeds, had no apnea/bradycardia for 8 days, and close to 5 pounds
2 weeks in NICU proper 3 weeks in NICU TRANS nursery Almost 5 lbs upon release
33 w gestation 3 lbs, 5 oz
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