Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
Click on May's photo here to link to her best bits, including videos!
Email her or her mama at: email@example.com
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- April 23, 2014 // 1 Comment
- April 22, 2014 // 0 Comments
- April 18, 2014 // 4 Comments
- April 16, 2014 // 3 Comments
- April 15, 2014 // 3 Comments
- By Adrianne, April 23, 2014
- By Mama Lewis, April 22, 2014
- By Ellen S., April 21, 2014
- By Mama Lewis, April 19, 2014
- By Scott, April 19, 2014
Don’t understand a term?Click here: TO SEE MY GLOSSARY!
Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
Please remember, I am not a medical expert. This blog is record of my experience and the methods I use with my daughter. That is all.
In order, to assist with the ridiculous amount of jargon associated with a disabled child, I present the following glossary.
Please email me at firstname.lastname@example.org if I missed any terms requiring definition.
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Cerebral Palsy – an umbrella term for brain damage received as a baby or young child
EEG – (electroencephalogram) a test to detect problems, such as seizures, in the electrical activity of the brain; the test, which is painless, takes about an hour and reads her brain activity via by electrodes stuck to her head
Health Visitor - a nurse devoted entirely to new mothers and their babies
Lycra suit(ing) - (AKA Supergirl Suit) a snug lycra suit that is tailored exactly to May’s measurements; should stimulate her arms with sensory pressure and give her extra support to help her posture and (fingers crossed!) sitting; looks like an outfit one would wear if attempting to climb a French mountain on a bicycle
MRI – Magnetic Resonance Imaging – that enormous, white machine you see on TV medical dramas that looks like a whole body capsule, kept in a room on its own adorned with a one-way mirror, behind which doctors discuss all kinds of ghastly theories about the patient. In reality: a machine that uses powerful magnets instead of radiation to create an image of the internal structure of the body; particular good at visualizing the soft tissues of the body, like the brain.
Neurologist - doctor specializing in the brain; neurology – science studying the nerves and nervous system (brain)
NHS – National Health Service; the British health care system. I will go into more details in later posts.
OT – occupational therapist, assists with fine motor skills (smaller movements like picking up peas)
Phenobarbital – a barbiturate used to treat seizures in infants; May no longer takes this.
Physio – physiotherapist, assists with gross motor skills (bigger movements like running)
Pyriodoxal Phosphate – vitamin B6 in its active, post-metabolized form. Though I wouldn’t quote me on that. Mock 2 of May’s pyridoxine dependency issues. Became a possibility as May responded to pyridoxine treatment, but did not register dependency when tested.
Pyridoxine – vitamin B6 supplement that May takes daily; B6 deficiency causes seizures in infants. Doctors thought May had a rare metabolic condition that meant she could not metabolize B6 properly. She showed an almost immediate response to this, though her test results on dependency came back negative.
Red Book – a red, medical record book given to all British parents when their baby is born; used to record measurements, vaccinations, etc.
SALT – speech and language therapist, assists with feeding and communication
SCBU - Special Care Baby Unit in the Neo-Natal Intensive Care Ward (AKA in the States as NICU or Neonatal Intensive Care Unit); the room in the hospital where May spent her first six weeks
Sodium Valproate – anticonvulsant drug used to treat seizures.
Splint – a foam glove that May wears around her hands to keep her thumbs out rather than fisted; some children also wear them on their feet
Statmenting or a Statement – After assessing a child’s special educational needs, the council writes a formal report called a “statement” detailing what she requires. This could be anything from equipment to help her sit to one-on-one care at nursery.
The Boss – May’s pediatric neurologist and also one of the directors of the hospital; not a nickname, that’s what the other doctors call him too
Tone – specifically “high tone” in May’s case, a stiffening of the muscles. Low tone means the muscles are floppy. Though it may not be possible to stop it entirely, if not treated, a patient can lose their full range of movements.
Toparimate – anticonvulsant drug used to treat seizures; may suppress appetite so one possible cause for May’s low weight.
VEP – (visual evoked potential) – a test like an EEG, that specifically reads the brain activity involved in sight; used mainly for people, like babies, who can’t tell doctors what they can or can’t see; lights are flashed into the babies eyes to see if the signals are reaching the brain