Tears Over Tastes: Rediscovering Joy In Every Bite

So much has happened over the last few days, from incredibly proud moments, to incredibly worrying moments. Late last week we had a visit from the Speech and Language Therapist (SLT) for a SALT assessment, basically to give an initial assessment on if she could control her swallowing to enable to her to be able to have small amounts of pureed food orally.

Eira has been having a restless and unsettled few days, but we were optimistic for the SALT assessment as she has shown signs of swallowing her own saliva, and medications which she has received orally, to the annoyance of the nurses!

We started off with minute amounts of Prune pouches, which Eira, being Eira, wanted more and more and absolutely smashed the swallowing element, we even had the nurse for the day in tears at how well Eira was doing. The SLT started off by explaining that a video-fluoroscopy would more than likely be needed to determine the full extent of Eira's swallowing capabilities however this would unlikely happen for a few weeks, even months.

However, after Eira took just a few small amounts of Prune Juice, the SLT quickly determined that Eira was more than capable of swallowing, and that a video-fluoroscopy would be needed much sooner and that she would try and arrange it as soon as possible, hopefully to be done on Friday 16th May at Noah's Ark Childrens Hospital Cardiff.

As this was an initial assessment, the SLT advised not to overdo it and to only offer around 10-15 quarter teaspoons of smooth pureed foods or yoghurts for the time being, and a further assessment would be completed after the video-fluoroscopy to determine if Eira can attempt more complex foods and liquids. Today she has been enjoying her favourite Peppa Pig yoghurts, although she was not happy when she was not allowed any more. Nasty Daddy!

Those were the best parts of the last few days, Eira has otherwise been very unsettled and has needed a number of Buccals of Medazalam to help her relax. On the plus side, these Buccals are just 0.15ml, so a very tiny amount, compared to the 5ml per hour she was on via a syringe driver just 2 and a half weeks ago.

There are lots of things in the pipeline over the next week in relation to Eira's progress and the plan to get us all home. We will update Eira's Story later on in the week.

P.s Thank you for all your donations so far, every single £ is greatly appreciated.