Where’s the time gone?!

I can’t begin to apologise enough for the HUGE delay in updating Daisy’s page. I know that friends and family look here to find out how Daisy is and what she’s been up to, but fear not, I’m finally getting round to it! Things have been so busy since Christmas…Daisy had a fabulous time and received lots of lovely presents. She had been a bit unwell with seizures and an infection leading up to Christmas so we were so pleased that she managed to get herself home and feeling better. The New Year saw some new additions to Daisy’s accessories as got her first pair of glasses and was fitted for splints to try to correct the position of her feet/ankles. She even got Star of the Week at school for coping with the changes so well and using the Eye gaze software with her new glasses. We’re so proud of our gorgeous girl and the way she deals with everything. She was deserving of a bit of pampering so had a trim and a little French plait in her hair. She looked so grown up and completely adorable! Unfortunately it’s just a hair clip at the front the rest of the time but maybe I’ll acquire some plaiting skills with enough practise (and someone to hold Daisy’s head up for me!). We had some lovely walks at Haigh Woodland Park during January and got lots of fresh air. It is one of our favourite places to visit and Daisy loves wandering through the trees and listening to the noises. Daddy also loves to wave at the train as it goes past, Daisy humours him and goes along with it too!After being well throughout January and managing to fight off the nasty bugs, Daisy had little blip during February half term. We’re not quite sure what the trigger was but she had a bad seizure on going to bed. We couldn’t stop it with her rescue meds so had to call an ambulance. It was eventually stopped with stronger meds in hospital but left her very groggy for a few days. Her test results were okay so it seems it was a virus rather than anything more sinister. We were so relieved to have her home the following weekend and be able to get her back to her normal routine and surroundings.One of our main jobs for February half term was to organise Daisy’s World Book Day costume – this plan was rather scuppered by the seizure! Once she was gone we were in a mad panic to get it all sorted. We had chosen the book (Room on the Broom) and had lots of good ideas but that doesn’t necessarily translate into anything for her to wear. We might have had to stay up until the early hours of the morning sewing skirts, gluing ribbons, plaiting wool, baking modelling clay and fastening toys to a broomstick but it was completely worth it to see how fabulous Daisy looked and to listen to the fuss she was getting at school. I just haven’t got a clue what we’ll do next year!Daddy had a rare day off in the week at the beginning of March so was able to join Daisy in the pool for her hydrotherapy session. I’m not sure who enjoyed it the most!The big news in our house was the arrival of our new addition…Daisy became a big sister in March! This has meant quite an adjustment for us and has kept us rather busy (hence the lack up updates!). Daisy is getting used to her new role and the fact that there’s always a little person trying to touch her, poke her or climb on her! At the weekend we can have pram/chair each so it’s not an issue but, during the week when it’s just Mummy, we have invested in a buggypod. It’s a bit like a sidecar that attaches to Daisy wheelchair! [Just to confirm: our new little girl hasn’t got a cartoon face, it just seemed to be the best way of maintaining privacy for the time being but still being able to share pictures with Daisy’s gang of followers! Daisy is a Wigan 10k veteran so she couldn’t let the Run Wigan Festival go by without getting involved. She did the 5k race with Daddy and they stormed it in an impressive time of 40 minutes. She even welcomed her new sister into the tradition by doing the family run with their big cousin Ruby. Medals galore!Daisy loves getting involved in any festivities and Comic Relief is no exception. She donned her Bertie bunny tshirt, red nose boppers and we even got Daddy to add red tape to her Swedish noses (these are the heat and moisture exchange valves that go on the end of her tracheostomy). She got quite a few compliments on her red noses so it’ll have to be a tradition that continues!Not only did she don her red nose, Daisy also took part in Let’s Dance for Comic Relief. Daisy had a starring role as a lion and she looked so fabulous in her costume. Definitely the cutest little lion cub I’ve ever seen!Daisy has an annual membership for Chester Zoo and it is one of our favourite days out. It was an obvious choice for our first proper outing as a family of four. We had such a lovely day and Daisy was able to show her little sister all of her favourite animals. Our house can be a bit chaotic at the moment so Daisy jumped at the chance to have a day out with her PAs Laura and Ruth in the Easter holidays. She must’ve behaved herself because they’re doing it again at half term!We had our family adventure to Barnacre during the Easter holidays. All the gang headed to Woodpecker Cottage for a week of walks, ice cream and log fires. Daisy loves spending time with all her cousins and had the addition of her baby sister and baby cousin this year.We visited Bowland Wild Boar Park, had lovely walks to Scorton and Garstang, and even ventured to a rather wet and windy Blackpool – seeking refuge in the Sea Life Centre! It was lovely to have quality time together and we look forward to this holiday every year. It wasn’t quite plain sailing though, the seizure monster made two appearances but, thankfully, we were able to stop them with her rescue meds without needing to go to hospital. It’s just something that we have to be prepared for, especially when she has busy days and gets overtired or there’s cold viruses knocking around.It’s almost unbelievable to write this but April saw us celebrating Daisy’s 5th birthday. We can’t believe how quickly the time has gone yet in other ways it seems like she’s always been with us and we’ve been through so much together. She celebrated her birthday with her sister, cousins and friends at The Space Centre in Preston. It was Easter Saturday so we decided to make it an Easter party – cue the bunnies and chocolate eggs!As some of you will know, Daisy is a regular visitor to Old George’s pond. It seemed only right that she introduced her little sister to the ducks and they got to see lots of new ducklings swimming and waddling around. We also had a trip to Haigh Woodland Park. There is a teddy bear swing which Daisy is able to use and it meant that the two sisters could swing side by side. Lovely family times for us all.With the lovely May weather, we’ve been having as many days out as we can. A bright sunny day saw us head to Walton Gardens to play on the park, wave at canal boats, visit the animals and ride on Thomas the Tank Engine!Our girls have been spending lots of time together and it seems that Daisy is a very interesting big sister to ‘explore’!Another weekend and another park…this time we spent the afternoon at Pennington Flash.Because Daisy had a seizure at the end of our Easter holiday, we had to rush home to get her settled and monitor her closely. To make up for this rather abrupt departure, we returned in May and had a lovely day doing a few things we didn’t get time to at Easter. We started off with a visit to Barton Grange and Daisy got to stroke one of the baby owls.We then headed to the Barn at Scorton for a delicious lunch before our final stop at Williamson Park in Lancaster.Daisy had a very special trip to the cinema in May to watch Beauty and the Beast. Mummy has always encouraged Daisy to enjoy singing and dancing to Disney songs so this was the perfect day out. The staff at Empire in Wigan were so kind and made a real fuss of Daisy on her first proper cinema visit. She managed really well and we definitely wouldn’t be so reticent at taking her again.Daisy had another blip in May when she had a nasty seizure at school. She ended up having to spend some time in hospital but we managed to get her home a couple of days later. It was just in time for her to be moulded for her new home seating. Daisy is going to have a P-pod seat which will give her somewhere comfortable to sit and make it easier for her interact with her surroundings. I’ll add some pictures once it arrives!Daisy went to the Space Centre again in May to celebrate her friend Joe’s birthday. She had a brilliant time and really enjoyed the UV strands and the interactive screen.We had a gorgeous walk along the Leeds Liverpool Canal after a visit to Frederick’s Ice Cream Parlour in Chorley. Daisy loves the fresh air and would spend all day outside as long as she’s warm enough. She waved at all the canal boats that sailed by and it made Mummy quite fancy a trip on one…we just need to find a wheelchair accessible one!Daisy broke up from school on Thursday 25th May after a very action packed half term. She was greeted after school by her adoring cousin Lily who gave her a hand massage and lots of snuggles. Daddy was very pleased that she brought some baking home with her too! Daisy has been doing pirate-themed activities and baked some delicious chocolate brownie pirate ships.I think you’ve all ploughed through enough Daisy adventures for one evening so I’ll leave the half term photos until next week. You’ve got to leave them wanting more! Thanks for all your continued support and kind words, it really means a lot and I’ll definitely not leave it as long between updates! x


    • That’s brilliant, thank you. We only wanted to do a day trip as we thought it might be a nice experience for Daisy (and us!). I’ll have a look at the link today. Thanks again!

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