Special Needs Baby
Due to Aiya’s size and muscle tone we have struggled to find a high chair appropriate for feeding through the usual retail means. After some debate with the local authority's Occupational Therapy service, we were able to ensure that Aiya received a specialist chair for her needs. I won’t stand on my soap box for… Continue reading We have a high chair!
I’d been signed off work after the 21 week scan, needing a while to process what we had been told about our unborn baby. It was as if we were on pause during this time and still shell shocked from all the information we had been given. Our life had somewhat stopped but the world… Continue reading Second Fetal MRI (32 week + 4 days)
As most parents know, teething can be one of the worst stages a child goes through in terms of sleepless nights and requiring pain management. In my experience with my son this was quite a short term issue (relatively speaking) and once he had his first 4 teeth by the age of 1, the rest… Continue reading Teething and Sleeping
It has been an emotional few weeks and it’s been difficult to write against a backdrop of mixed emotions as we have been given more clarity on what Aiya’s future may look like, good and bad. Aiya’s condition is Microcephalic Osteodysplastic Primordial Dwarfism Type 1 (MOPD Type 1) and there have only ever been 30… Continue reading Microcephalic Osteodysplastic Primordial Dwarfism Type 1
I was desperate for a little girl when I fell pregnant with Aiya. I would constantly daydream about what it would be like to have a daughter and how it would change my world. I would day dream about shopping with her, lunches, afternoon tea, teenage angst, thinking if my daughter was anything like me… Continue reading Aiya’s First Haircut
I had never heard of the term Microcephaly before we had our first ultrasound scan at 21 weeks and it wasn't until a few weeks later that the term became embedded into my psyche. Around the time we were dealing with the news that our unborn child’s brain was not developing as expected, the media… Continue reading Microcephaly (22 weeks + 1 day)
Aiya’s main challenges result from her delayed development, small stature, hearing loss, visual impairment and hip dysplasia but the biggest issues for her and us to deal with on a daily basis (and which currently cause her the most distress) stem from her severe allergies and eczema. At 5 months old Aiya was taken to… Continue reading Aiya’s Allergies
In my quest to ensure Aiya has a balanced diet which includes fat vital for her brain and nerve tissue development, I resorted to making my own fat as she is allergic to all other available fats such as butter and olive oil. For someone who does not like red meat or the smell of… Continue reading How To Render Beef Fat (Suet)
I don’t know if I would have made a different decision about the amniocentesis if I’d had more time, but I feel like at the time the Consultant was more eager to carry out the process than I was. It all happened so quickly and I did not have enough time to think. We had… Continue reading The Amniocentesis
All babies develop at different rates and I have fully embraced this truth with Aiya. I don’t worry about what she’s supposed to be doing for her age as I did with my first, constantly referring to my copy of ‘What To Expect - The First Year’ to check if my little boy was where… Continue reading Development Journal
Project Aiya 