Not Normal

Hydrocephalus central apnea syringomyelia hypotonia severe dysphagia bilateral vocal cord paralysis kyphosis paraplegia bladder disynergia autonomic dysregulation fevers tachycardia tachypnea macrocephaly microcephaly heterotopia partial agenesis of the corpus callosum innervation enervation vesicouretal reflux pneumonia hydrocele hernia chronic lung disease bacterial colonization yeast slipped cervical disk oral aversion tactile defensiveness echolalia hyperlexia pragmatic language disorder eczema allergies seizures ulcerative process blue spells spina bifida closure repeat chiari decompression repeat repeat fundoplication tracheostomy gastrostomy repeat? orchidopexy repeat third ventriculostomy VP shunt repeat repeat repeat

LTV 1950 enteral pump suction machine chamber pulse-oximeter oxygen towers compressed oxygen tanks nebulizer Microvasive mic-key neo pedi flexi bivona custom 2.5 3.0 3.5 4.0 Shileys suck VP shunt braces standers positioners soft restraints walker crutches wheel chair augmented communication devices emergency go-bag ambubag power cords battery packs thermometer luer lock syring and tooth on vent at all times please.

propranalol ditropan clonodine detrol sanctura ativan morphine labetalol Tylenol ibuprofen robinul atrovent normal saline miralax pedia-lax flovent probiotics bactrim nexium albuterol pulmicort mycolog cream nystatin tobimycin antibiotics repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat repeat

aquacel mepilex duoderm split gauze silk vs. paper vs. orange tape alcohol swaps catheters lubricant sterile fields cath cups bzk wipes sterile gloves nonsterile gloves trach ties spare trachs same size downsized feeding bag extension tubing circuit suction ballard humidification chamber puffer attachment bactofilter black filter sponge filter soft restraints omniflex extension tube sat probe syringe sterile water suction catheter scissors

PRN NPO PDN LTV ETV BPD CLD CPR DNR ADD PIP PEEP LMV MRI CAT ML CC GFCF GAPS ASD IEP AFO ER CCMC YNHH CHB NICU PICU MICU EEG EKG VCUG U/S swallow studies gastric emptying studies x-rays sleep studies hearing tests urodynamics resuscitations developmental score cards scheduling rescheduling attending specialists neurosurgery neurology urology otolaryngology pulmonary respiratory gastroenterology cardiology genetics orthopedics orthotics developmental pediatrics nutrition therapy occupational physical speech language social skills aquatic riding manual chiropractic training nurses organizing nursing supervisory checks taking and giving shift reports watching monitors watching vitals taking temperatures covering night shifts day shifts filling prescriptions considering medication side effects researching everything establishing bowel programs ordering supplies changing out broken equipment filling oxygen tanks fighting with nursing agencies checking for slack before moving with my baby taking half an hour to move baby to another room weaning baby from vent choosing between and farming out my children finding childcare for a child who is cathed attending IEP meetings purchasing gifts for their therapuetic value dictating conversations on note cards compensating for inability to walk or pretend-play correcting insurance issues back and forth trouble shooting todays crisis on the phone on email in my living room

Homemade food homemade laundry soap homemade dish soap homemade pureed formula temperature no higher than 70 degrees boy(s) in a bubble. Dreams of beach days, evening walks in the neighborhood, two parents on the weekends, kids playing in the yard, cereal for breakfast, sandwiches for lunch, pizza night, conversations with my 6-year-old, family movie night, attending social gatherings together, eating whatever is served, Mass on Sunday, and toilet training for all.

This is what we are, who we are. Either you know this, and it shouldn't be surprising. Or you don't, and therefore you don't know us. (And you need to know us because this is lonely: Having to pass as normal.)

Either way, don't call it Our Normal, because it isn't normal at all. Please do save the pity if you love us. But pass the wine, and maybe some sourdough bread.