Another Easter saga!

Well Easter has been one of peaks and troughs (both literally and figuratively!). I wasn’t sure whether to do two separate updates or one marathon one – I opted for the latter so bear with me! 

It has become an Easter tradition to go away on a Walsh/Easton family holiday. We have had some fabulous days out together but both times have ended rather too abruptly and with Daisy in hospital. We decided to go for third time lucky and make a return visit to Woodpecker Cottage in Barnacre. As you can see from the picture below, Daisy decided to travel very lightly! Just packing the basics!  It was a lovely day on Good Friday, despite the traffic, and we arrived in the beautiful setting of the Forest of Bowland. Daisy loves the fresh air and enjoys going on walks along the country lanes with her cousins.  We had ordered an array of Easter crafts to keep the children entertained in all weather and, with some of the rain we saw, this was a very wise move! The first project was decorating Easter bags that we could use on our egg hunt. These proved to be much smaller than anticipated but they had fun nonetheless!  The next activity was more lengthy…Easter bonnets. I managed to get different coloured hats for the ladies and a slightly more masculine looking trilby for Kian. We had every spring adornment you could imagine! They all went in the conservatory to dry ready for the Easter egg hunt in the morning.  While the Easter crafts were popular, nothing could draw such an enthusiastic crowd as Daisy’s weekly MOT! On her weekend bath we always change the water in her Mic-Key button, check the pH in her extension tube and change her tracheostomy tube. This proved to be a big crowd pleaser and her cousins did not want to miss a second of it! It’s so lovely how much they want to help to care for Daisy and how much they want to learn about what we do to look after her.  Bright and early on Easter Sunday the cousins donned their bonnets in readiness for the hunt…  Bags in hand, they read the first clue and began the hunt! It took them high and low, inside and outside until they reached the final stash of chocolates, presents and egg hunt medals! An exceedingly generous yet fictitious bunny (who unnervingly rummaged through the cupboards all over the house while we slept!)  Once the hunt was complete and we had completely gorged ourselves on an array of treats, we made some handprint Easter chicks. It was pretty tricky trying to draw round Daisy’s hands as she tends to keep her thumbs tucked in and her fingers tight. Once our daily craft was complete we sat down for a delicious roast lamb dinner straight from the aga! The ultimate rural Easter feast!  Despite the chilly weather on Monday, the owner of the cottages brought Fluff the pony to visit and Daisy’s cousins all had a couple of rides on him. Daisy enjoyed watching them from her buggy. We did perch her on Fluff last year but the wind was a bit too cold this year and Daisy’s getting quite heavy to casually perch on live animals!  Daisy’s bestest little pal was on hand to assist with the evening bath and tape change. Lily is so wonderfully attentive towards Daisy and wants to help with everything. Completely adorable! We ventured to Lancaster on Tuesday and visited a lovely place called Williamson Park. Daisy really enjoys the fresh air but this had the added advantage of a butterfly house. It was a very pleasant 30 degrees in there and Daisy enjoyed exploring.  One of the butterflies took quite a shine to Mummy’s floral jumper and got rather comfy on her shoulder. It stayed there as we walked along the paths and didn’t seem keen to depart! There was water around the outside of the room so Daisy and Daddy enjoyed watching the terrapins sunbathing!   After having a walk through the minibeast cave, we ventured outside and enjoyed the beautiful views from the Ashton Memorial. The park is close to Gallows Hill where the Pendle witches were executed so is very high up and you could see for miles around. Rather breezy though!!  Wednesday saw our travelling circus set up camp at Bowland Wild Boar Park. It was a lovely day with lots to see. Daisy and Lily enjoyed a breezy tractor ride in the trailer. Her cousins also had a few barrel rides behind the tractor too.  We then went on a muddy walk along the Wild Boar trail. Daisy enjoyed the bumpy path and saw lots of animals along the way.   Unfortunately, this is where the peaks turned to troughs…Daisy had had a very busy day and was tucked up in bed fast asleep. We were all in a room together so we decided to have an early night too. Daisy’s sats monitor was on and we noticed that her heart rate had gone up a little but nothing worrying. Paul then heard a scratching sound and noticed that Daisy’s arm was twitching against the bed sheet. We turned on the lights and it was obvious that she was having a seizure. This subsided after about ten minutes. Daisy is on a low dose of anti-seizure medication and has been having some episodes when she wakes from daytime naps but this has never occurred once she’s fast asleep at night. She was due to be reviewed by her consultant after the Easter holidays. We hoped that it was just a one off but it began again and continued for about an hour, only stopping when she received two doses of Lorazepam at hospital. Daisy was pretty much knocked out for twelve hours and, even when she woke up, she wasn’t interacting with us and was very groggy. She was kept in HDU for monitoring and they did numerous tests to determine what caused this prolonged seizure. Her blood results were normal, her infection marker was low and her urine sample ruled out any water infection. It seems that we might not know what caused it – it could’ve been that she was over stimulated from a very busy day, she might have some underlying virus or it could just be a neurological change as she grows that has made her epilepsy flair up. After a further day of monitoring on Friday, we managed to escape home in the evening to let her recuperate in more familiar and relaxed surroundings. We haven’t had any rescue medication at home before because seizures had been mild or fleeting; this time they have ensured that we have Buccolam which is a Midazolam based drug that we need to administer if she is fitting for longer than 5-10 minutes. We feel reassured that we have something we can do to help because we felt pretty clueless and helpless on Wednesday night! We’re pleased to report that Daisy is beginning to feel more like herself and has begun to give us some of her trademark grins this weekend. Hopefully we can put that horrible night behind us and endeavour to never repeat it! We hope you all had wonderful Easter wherever you were and whoever you were with xx  

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