Diagnosis

• Allergies
• ALTE- (Apparent Life Threatening Event)
• Apnea with brachycardia- (Stopping breathing with a super low heart-rate)
• Asthma
• Bacteria Overgrowth- (Overgrowth of bacteria in the gut)
• Central Apnea- (She stops breathing and is one reason she has a trach)
• Chronic Diarrhea
• Dysautonomia-( Her brain doesn't properly control her temperature, breathing, heart rate etc)
• Dysphagia-(Weak or non existent swallow)
• Eosinophilic Gastroenteritis (Basically her GI tract treats most everything like an allergen and attacks it causing all kinds of pain and swelling and damage)
• Gerd- (Gastro Esophageal Reflux Disease or more commonly BAD Reflux)
• Hypertonia that comes and goes  (tightness of the muscles)
• Hypogammaglobulinemia (This one is complicated but basically she only has a partial immune system. The Immune system is made up of IgA, IgG, IgD, IgE, and IgM. She is missing her IgM and is severely deficient in her IgG. )
• SEVERE hypoglycemia -( Low blood sugars)
• Hypotonia of the trunk ( chronically Weak muscles)
• Laryngeal spasms (When her upper airway collapses shut and is another reason to have the trach)
• Laryngomalagia (Weakness of the swallowing and speaking muscles, also another reason to have a trach)
• Lock Jaw -( when her jaw locks open)
• Moderate gross motor developmental delay (Gross motor is walking, jumping, running etc)
• Moderate Emotional/social developmental delay- She is socially and emotionally "delayed"
• Mitochondrial dysfunction ("Mito" for a better explanation go here What is Mitochondrial disease? )
• Mild fine motor developmental delay (Fine motor is using your finger to hold a crayon or pick up a grain of rice etc)
• Motility Disorder/Dysmotility (Motility is how the stomach and intestines empty themselves, lily's doesn't work properly. When I say she "isn't tolerating feeds" it is because of her dysmotility. Either her stomach isn't emptying at all or its emptying way way to fast, it just depends on the day... ;/ )
• Oral Aversion -(She is very "sensitive" to textures especially being placed in or around her mouth. Also her gag reflex is very very strong.)
• PFO- (Patent foramen ovale- a common type of a hole in the heart)
• Recovering failure to thrive- ("FTT" this was when she fell off the growth curve from before she had her feeding tube. She was so so skinny)
• Sandifer Syndrome- (rare "seizure like" episodes caused by SEVERE Gerd)
• Sensory Processing Disorder- (A disorder that is considered to be on the autism spectrum. Basically She processes things through her 5 senses differently than the average person and it can become so overwhelming that she either "shuts down" or has a "meltdown")
• Severe adaptive delay- (this one is hard to explain "briefly" so here is a link adaptive delays in children )
• Severe systemic disease - (basically she has a disease (mito) that affects multiple systems in her body)
• Silent aspiration (this is when food, drink or saliva "goes down the wrong tube" or goes into her airway/lungs. Most people cough and hack when this happens, but with Lily her body is so used to it happening that she no longer coughs and sputters therefore it is "silent")
• Sinus tachycardia -(Unexplained dangerously high heart-rate)
• Visceral Hyperalgesia -( a neurological pain disorder- Her body feels pain from things it shouldn't, like water hitting her stomach, or her bowels moving waste etc. She is in CONSTANT pain)
• Widespread weakness of the left side -( her entire left side is weaker than it should be)