Happy Easter!

And welcome to our first Nina News update 💕

On Sunday we braved Storm Dave and gave Nina’s new sit up car seat a run (Thank you crowdfund friends 🤍) and drove over to Alloa to visit Nina’s friend Ayla and her mum Caroline. Ayla also has a diagnosis of Full Trisomy 18 (Edward’s syndrome) and Nina really resembles her baby pictures… but Ayla is a whopping 14 years old! This is a testament to her spirit of survival but also to her endlessly devoted mother Caroline ❤

We all hopped (pun intended) over to MOCS Turkish cafe in Alloa that is super accessible for the wheelchair and buggy and of course both Ayla and Nina had a lot of lovely attention from the very friendly staff. Caroline and I got a much needed at-speed catch up, since you never knows what’s going to happen with these kiddos!

A medical mom catch up is parental multi-hyphenate on speed: “journey was crazy, snow then sun + blue sky!” ~ “how’s your new carer doing?” ~ “consultant found a UTI research study” ~ “Baclava is great here” ~ “trying to get a dental appointment” ~ “where are you going for weekend respite now?” ~ “Ayla’s seizure activity today…” ~ “ “starting a substack” ~ “how’s Ayla’s dad?” ~ “financial guardianship” ~ “need any syringes?” ~ “heard of this charity offering training” ~ “how was Berlin?” ~ “hospital lost urine samples” ~ “got some food pouches if you want them”. It’s an imposed mania and it’s funny to make light of but it’s really no wonder we literally die earlier than normal parents 🤯 But never mind about that…look at the cute baby bunny with all the smiles for Auntie Caroline!

Overall it was the loveliest day and Nina had a good one health wise…though she did hit a sudden pain episode 10 mins from home that had me frantically pulling over in a panic. We both calmed down quickly enough though and all was well in the end, here she is winding down with her little sookie:

That’s all folks! Until our next update

With Love 💕