Nine Weeks, A Thousand Emotions... One Step From Home

As the medical side of Eira's care slows down in hospital, with us being fully trained on all aspects of her care, including giving her the medication she needs, when she needs it, we look to home. The word home has been brought up a number of times over the past week. Home. A place that although it is exactly the same as it was 9 weeks ago, is now a different place altogether.

A meeting was held on Tuesday 10th June to discuss discharging Eira from hospital. This meeting included professionals from Both Cardiff & Vale, and also from Hywel Dda. This meeting was predominantly about a bed. A Bed. Due to Eira's inability to roll over, sit up, or even move at all, everyone at Cardiff & Vale, Including us, felt that her current cot would be suitable in the interim until her 'forever bed' arrives in around 14 weeks, and thats a different story. However, and this is where the hurdle is, those at Hywel Dda, most who have not met Eira, are basing their opinions on what Eira was like many weeks ago when we first arrived at Ty Hafan, which of course, is remarkably different to the way Eira is now. They believe that using her current cot poses too much of a risk, and that she needs a 'hospital' bed that can be lowered and raised in the interim. There are a number of issues with this, firstly, the charity Newlife, who would normally supply a bed on 'loan' until her 'forever' bed arrives, do not have any available at the moment, secondly Hywel Dda are trying to source one from one of their stores, which isn't exactly like buying groceries at the local supermarket. This is where the delay is, Two health boards, with different opinions, and with Two different outcomes. The frustrating part about this is that the people who are making the decisions on behalf of Eira, and us as parents, haven't even met any of us. All because of health & safety, regulations, and risk assessments. It doesn't matter what we think, it'll ultimately get decided by others. The hope is that there is a resolution before the end of the week, or at least early next week.

The rest of the week we have tried to make the most of the days where the skies were blue and enjoyed the outdoors. Who knew there were so many parks to walk around in Cardiff! Eira has continued to absolutely love being outside with the wind in her face and the bumpiness of the buggy as it strolls along. We have enjoyed a number of walks in Heath Park, which is right next to the hospital, and we also had a mini adventure in the car over to Roath Park, although next time we'll maybe avoid a weekend for visiting there.

The times where have stayed in, Eira has enjoyed having cwtches with everyone, and even had a go at tummy time on us, which of course, for Eira, was incredibly comfortable and even led to her almost falling asleep!

Although we always try to show the positive side to Eiras recovery, not every day is easy, not every day is better than the last, and Eira certainly has her bad days. Today was one of those days, after a poor night sleep, and the reluctantness to nap during the day, as we all do, Eira got more agitated as the day went on. What Eira needs is a good nights sleep, with the noises and alarms of. hospital ward that isn't easy, hopefully, we are just one step away from a good nights sleep, one step away from our new adapted life, one step away from Home.

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We just want to re-iterate that we are deeply grateful for the outpouring of kindness, encouragement, and support from everyone. You're compassion, whether through words, actions, donations or simply thinking of Eira, mean more than we can express. Thank You x