This post was written as part of the Finding Courage Through Sharing project over at In The Life Of A Child.  

Ivy – born at 30 weeks, blistered rash, cow’s milk protein intolerant, lactose intolerant, eczema, nasty reflux, nasty poo, failure to thrive.

Nothing to worry about, nothing to fear. She’s a prem, it’s the medication, it’s just Ivy.

Ivy – middle ear infection, bronchiolitis, otitis media (chronic) with perforations, pneumonia, gastro, asthma, gastro, asthma, gastro, more colds and flu, more ear problems, another chest infection, asthma, eczema, her ears, oh, her ears.

It’s okay, she is small, family history, you expected this. This is our Winter. It’s just Ivy…

Ivy – grommets, infected adenoids, asthma, continuous discharging ear, hospital admissions, Staph, Pseudomonus, gastro, asthma, more gastro. Will it ever end?

The doctor’s tell me it’s just Ivy but I think there is something else.   Don’t be silly, she was prem, you have to expect this…

Ivy – Long term antibiotics, EES, Bactrim, Augmentin Duo, Amoxicillin, Flucloxicillin. Nothing works. Ciproxin, hydrogen peroxide, flixotide, prednisone. IV antibiotics.

This is not normal.  Could she be immune deficient? Could she have Ectodermal Dysplasia? Like her older sister? The doctors say that her bloods are normal. She is not like Imogen. She is just Ivy.

Ivy – diarrhoea, blood and mucous, huge blisters (bullous). Staph, biopsies, bloods, colonoscopy, endoscopy. Pemphigus, auto immune, weight loss, vomiting, crying, oh the crying. Pain, pain, pain. Too many hospital admissions.

Stop! I can’t cope with the tears and the pain. Hers and mine. There is something, there is. Look harder.

Ivy – more bloods, more doctors, more tests. It is pemphigus, no it’s not, yes it is. Anaemia, bowel problems, more otitis media, more of the same and the pain, the gut wrenching pain.

Listen to me! I am her Mum. Don’t placate me with ‘I don’t know’s’ and ‘she’ll be right’s’. That doesn’t help. Another doctor and another, all the while getting sicker… Do something!

Ivy – gluten, wheat and lactose free diet, iron, prednisone. Things start looking up.

Some bloods have come back and you were right, immune deficient, ectodermal dysplasia, pemphigus, the doctors say. She’s a very interesting case, journal worthy. Yes but Winter is coming and I am scared…

Ivy – Hospital, very ill, septic. Ivy, hang in there, girl, we are getting closer to the proper treatment.

Will her life always be like this?  I hope not.

Ivy – Dapsone, bad decision. Methaemoglobinaemia, hospital again, jaundiced, haemolytic anaemia. Sick again. More blisters. An ear that won’t heal.

It feels like we are back to square one. Where to now?