Happy 2nd Birthday!

Aiya is 2 years old today and it’s amazing to see how far she has come given all the challenges she faces. Our little miracle baby came into this world at 1.2kg and measuring 40cm in length and is now 68cm and weighs 7.5kg. She is approximately the size my son was at 7 months old.

Physical Development

Aiya can now sit up unaided and although she does not crawl, she can push herself up and roll over when she chooses to.  Aiya does not roll over without encouragement and has no desire to move around. She has learnt that if she shouts, she can generally get what and where she wants to with someone else’s help. Aiya is very interested in her own hands and will watch them as she stretches out her fingers and is starting to understand that she can manipulate her own body.

Language and Communication

Aiya has started to babble very recently and can say “mam mam mam”. She uses vocalisation to get our attention and can demonstrate that she is happy or unhappy.  This vocalisation is general in the form of a growl, but she also brings her hand to her chin when she wants to talk and interact with people.

Emotional and Social Development

Aiya is very social and will happily go to new people especially if she is in a playful mood. She now makes eye contact to initiate interaction and as soon as she is being held by a new person will explore their hands and face.

Allergies and Dermatology

Aiya was recently diagnosed with a condition known as Ichthyosis Vulgarise which explains her very dry skin and requires treatment with cream 4 times a day. She also has Chilblains that have occurred due to the recent cold weather and I believe is due to her poor circulation. Her feet and hands are always cold and we have to use several layers to wrap her up to keep her warm.

Aiya’s Allergies have improved immensely since she was 6 months old and she does not react to environmental allergens like she used to. However she is still allergic to wheat, gluten, dairy (milk), eggs, soya, nuts and many fruits and vegetables.

General Health

Aiya has mild to moderate neurosensory hearing loss. Her vision maturation, although delayed, is improving and she is starting to notice more of the world around her whereas previously she would not be interested in anything outside her immediate surroundings. Aiya was born with dislocation of her left hip which she is due to have surgery for later in the year.  She has a weakened immune system which means she is more susceptible to picking up infections and it takes her longer to recover if she does pick things up, although this is less severe than in the other MOPD1 cases we are aware of (for example, she has not to date required immunoglobulin injections).  Aiya’s brain abnormalities means she is at risk of having seizures, brain bleeds or abnormal growths, which fortunately we have not seen yet. She is due to have an MRI soon, which will hopefully give us an insight into her neurological development and reassurance that there is not anything sinister happing as her brain is developing and growing.

Due to the poor prognosis for children with MOPD type 1, there are few predictions of what the future holds for Aiya. Despite all of her challenges, Aiya is a happy little girl and all I ask that she remains happy and pain free.