We Didn't Cry This Time, But We Could Have

Thursday 15th May

Although very much still unsettled, we tried to make today a fun and positive one ahead of a busy day tomorrow. Emily, our nurse for the day was determined to help us get the most out the day, and arts and crafts was top of the list! We decided to make hand and foot prints, and get our hands and feet full of paint. Eira & Angharad had their feet painted in red and pink, and Mammy & Daddy had their hands painted too.

Continuing with the arts and crafts theme, resident ballon artist Russell was on hand during lunchtime (Where Emily gave Eira some real food!) to create some masterpieces of latex and air. Angharad's favourite is Dancing fruits, so Russell opted for a Banana, and Eira loves Paw Patrol (as you can see from her NG tape) so Russell worked his magic and made a balloon version of Skye!.

The day ended with an eventful bath-time and an early night ready for the following day.

Friday 16th May

Today was a day of cuddles, emotions, confirmation and uncertainty. As we entered the hospital, the emotions of the events that occured just 4 weeks ago came flooding back to both of us. First stop at Noah's Ark Children's Hopsital (UHW) was the radiology department for a video-fluoroscopy, we met the Speech and Language Therapist Nikki who talked us through the process, we headed in and everyone aimed to make Eira as comfortable as possible, and prepared the berium mixture. Eira absolutely smashed it and the results confirmed that she can tolerate small amounts of pureed foods and yoghurts, but due to 'tongue pumping', liquids will still be difficult to swallow safely at the moment.

We then headed downstairs to the Seahorse Ward to meet Dr Saxina, the Head of the Neuro-Rehab Team. As we arrived, we were greeted by Dr Sylvia, the neurologist who originally told us that Eira would very likely not make it, and that 'they were doing everything they could'. We were unaware we were going to meet Dr Sylvia today so this affected us both as parents incredibly. Emotions ranged from frustration, to anger and as we both agreed, totally changed our mentality going into the meeting with Dr Saxina.

As Dr Saxina progressed through his initial discussion and assessment with ourselves and Eira, it became clear that Eira would not be in a position medically to be capable of Neuro-Rehab, which requires patients to be alert and be able to follow basic instructions. Instead, her symptoms around Dystonia and her stiff joints were discussed and it was decided that a course of 'symptom management' would take place at UHW. What this means is that at some point next week, when a bed becomes available at UHW, we will leave Ty Hafan to have a stay at UHW. It is unknown how long this stay will be, but it will certainly be weeks. For us parents, and as a family, this will be a new adjustment again from the 'luxuries' we have had at Ty Hafan, where we have been able to have Angharad with us everyday and night, and been able to spend time as a family, at UHW, this will not be possible.

The incredibly tiring day ended with cuddles all around.

P.s We would like to thank everyone from the bottom of our hearts for the supportive messages and donations we have received. Thank You.