The Autumn adventures!

I honestly can’t believe how long it is since I sat down to write something on here. I wish I could say that I had something to show for our two month absence but it has simply been so busy with Daisy, work and everyday life that I never quite get round to it. The main headline of September was Daisy officially starting school. She has attended Hope School part-time since she was two but has now reached the wonderful milestone of full-time school. We are absolutely bursting with pride at the way she has adjusted to this and she goes to school every morning with a smile on her face and has so much fun in Class 1. The start of the new school year also saw the arrival of Daisy’s little cousin Orla. They have already had quitea few cuddles and have lay together on the playmat just taking it all in. We know that Orla will grow up to be a lovely friend to Daisy just like all her other cousins are.Daisy hasn’t let full time education detract from her duck feeding duties. She really does love being outside in the fresh air and listening to all the sounds. The ducklings are pretty much fully grown now so we can’t tell the difference – we’re already looking forward to the pond being full of duckling again next spring!After a few weeks of school we had a little setback when seizures reared their ugly head again! Daisy had been a little under the weather with a cold but was seeming to be improving when she began to have a seizure at bedtime. We initially thought we had managed to stop the seizure with her rescue meds but within an hour the seizure had started again and, with no other options at home, we had to phone for an ambulance. The paramedics issued an alternative drug but this also had no effect. Once we were in hospital, the Drs were able to administer further anti-seizure medication. Daisy reacted badly to this third drug and her seizure became much more intense. Although it was awful to see we were at least able to learn that this drug is to be avoided in future. Thankfully after two hours of seizing, the fourth drug was successful. With so many different drugs in her system, she was sedated for about a day and a half. It is always such a relief when you start to see her coming back to her normal self. With so many bugs on the ward and Daisy being vulnerable to any infections, we managed to escape home as soon as possible. We have all the equipment we need to be able to monitor her whilst the sedatives continue to wear off. It seems that seizures are something we will just have to get used to and we are learning more about the early signs and how Daisy responds to different medication.Once Daisy was feeling better we were able to get out and about again and we took Daisy’s buggy to test drive some of the new paths at Haigh Hall. As you can see, she thinks it’s so funny when she’s exploring the woodland and it makes it worth the sometimes mammoth effort of pushing her up the big hill!September and October saw a few firsts for Daisy as we tried to give her some new experiences. Since her tracheostomy, she hasn’t been able to access the pool at school and we have struggled to find somewhere warm and accessible enough. We managed to book a slot at Hydro at the barn which was just outside Accrington. The facilities are absolutely wonderful and Daisy really enjoyed the warmth and the jets of water making bubbles all around her. We can’t wait to go again but there’s a HUGE waiting list!Daisy and Daddy got their skates on for another visit to Wigan Roller Rink. She enjoys the lights and whizzing round with Daddy. She’s not always keen on loud music but seemed to be happy enough this time. It’ll be the Christmas one soon and she’ll be able to recycle her sleigh from last year!Daisy celebrated her 2nd trache-versary by taking her cousins to The Space Centre in Preston. We love being there together and seeing them all play happily in the same place. Daisy had a relaxing swing with Orla as it was her first visit to Space – I’m sure it’ll be the first of many!Daisy had a first visit to the new sensory room that has opened a little closer to home. We had visited Sensoriel in Ince for an open day a few weeks earlier and decided to book a family session. It is much smaller than Space but it was a very relaxing environment and we will definitely be visiting again. Daisy enjoyed the chair that vibrated with the rhythm of the music being played and we were really impressed by the cube that you roll to change the colour of the room.With our focus on trying to give Daisy lots of new experiences, we paid a visit to Thompson House Equestrian Centre. We were really not sure how this would go and whether it would be completely impractical for Daisy. She was taken to meet Phoebe the pony before being fastened on the the carriage. Daisy’s chair is quite bouncy because of the suspension so we were worried about her being jiggled about too much. To see how she responded, the instructor walked slowly around the indoor dressage ring. Once we knew it was going to be okay for her they ventured outside and got up some speed on the tracks and the main drive. She seemed a bit unsure at times but then she was beaming when they were outside. It was quite difficult for us when the man took her off down the track and she was out of our sight but we kept calm and he was really good at being her back to us when her breathing had become a bit crackly. We only had the occasional suction break and we’ll definitely book again when the weather is warmer. Such a fabulous activity and something we never would’ve dreamt was possible for her.Never one to shy away from a challenge and determined to do what everyone else does, Mummy and Daisy decided to go pumpkin picking during October half term. We had not fully appreciated what a logistical nightmare this would be but we enjoyed it nonetheless. The first issue was parking up in a field and actually making it across the mud to the pumpkin patch. I hadn’t even thought about how I would actually retrieve and transport the chosen pumpkins back to the car!! We managed to bounce and often drag our way across the tracks and selected two pumpkins for carving. I had the bright idea of moving Daisy’s suction machine and tracheostomy box from underneath, carrying them on back and putting the pumpkins on the tray underneath. This worked well until I realised that every time I went over a bump, the pumpkins rolled away. After numerous bumps, pumpkins rolling away and me abandoning Daisy in the mud to chase after them, we finally made it back to the entrance where we could pay for our choices and try to pretend that it hadn’t been a complete disaster!We also had a half term visit to Derian House for their Halloween Party. Daisy made us both a mask and we managed to have a chat to some familiar faces. It’s good to see so many people there enjoying what Derian has to offer.The first faint traces of festive cheer emerged at the beginning of November with the Derian House Winter Sparkle Spectacular. Daisy enjoyed the crisp, fresh air and the first of many visits to see Father Christmas. He assured her that she’s a permanent fixture on the Good List!!The last of Daisy’s autumn firsts is her new sports therapy massage. She has been going weekly after school on a Monday and is really enjoying the hour sessions. The physio is working on Daisy’s arms and legs to try to reduce her tone and hyperextension. She still has a good range of movement but isn’t able to access it without assistance, the physio has been stretching Daisy’s arms out abover her head – she find this highly amusing! It has also been worthwhile in improving circulation in her legs. They are often icy cold from the knee down due to her limited movement and dislocated hips. At the end of her massage her limbs are lovely and pink. I can’t recommend this highly enough!We’ve had a few more autumn ambles through the trees at Haigh with the ever changing paths as the renovation work continues there. It is definitely one of our favourite places to visit. We stopped on the canal bridge to watch some very grown up looking signets with their parents. We’d much rather look at swans from a distance, too grumpy and hissy for us!!Daisy has used her pennies to fill two shoeboxes to send to Operation Christmas Child. She bought things for a boy and a girl who are the same age as her and we took them to the drop-off point at The Entertainer. We love doing this every year and we got an email telling us that last year’s boxes went to Liberia – I wonder where these two will end up?After taking Daisy to the annual Kidz Up North exhibition at Event City in Manchester, we had a quick visit to the Christmas markets in the afternoon. We wouldn’t attempt this with her when it’s busy but it is so quiet when everyone else is at work. We don’t need much of an excuse to don our Christmas hats and get in the festive spirit. She chose some decorations for her bedroom that will hang from her ceiling track over her bed.It was Children in Need day at school in November so Daisy channeled her inner Pudsey to help raise money for them. I think she carries off the teddy ears extremely well!We ended November with the Santa Parade in Wigan town centre. We had to fly solo because Daddy was poorly but we managed it (other than some camera calamities!). It lovely seeing the reindeer and the real Father Christmas on his sleigh. We also bumped into Daisy’s friends Henry and Sophie so we got to have a warm in the cafe before braving the cold again!Well I think that’s autumn pretty much summed up. Daisy’s been very well on the whole other than seizures. She had another one at home recently but we managed to stop it ourselves with her rescue medication. We’re just keeping our fingers crossed that she can keep well during the winter and enjoy Christmas with her family. It’s always a nervy time for us because we know all too well how difficult this time of year can be for her but we know she’ll do her very best to fight off the bugs! We’re hoping to escape to Center Parcs for the weekend to see Father Christmas so keep your fingers crossed for us!! We’ll let you know how it goes! x

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