A milestone month!

As you will know from Daisy’s last update, April began with the setback of increased seizure activity and the abrupt end to our Easter holiday. However, Daisy was not going to let this beat her and has bounced back in typical ‘Daisy’ fashion!! Her consultant has increased her anti-convulsant medication and we haven’t had any episodes at all, not even minor ones (which we are used to dealing with). It seems that the seizures she’s been having over the last six months were possibly a build up to the really prolonged one at Easter. Whatever the cause, we’re happy they’ve stopped for now!With no seizures, Daisy been more aware of her surroundings and has enjoyed getting out and about in the fresh air. We went to Mrs Dowson’s in Clayton-le-Dale with her big cousin Ruby (we were going to go here at the end of the family holiday before the seizure struck!) It was an early birthday treat and she seemed to really enjoy the different sounds. We were fortunate enough to arrive at the barn just as a cow was beginning to deliver a calf, Ruby was enthralled but Daisy decided this was the right time to have an accident in her trousers!! I had to do a rather al fresco nappy and clothing change in her buggy in a rather breezy barn. Not ideal! Things got slightly more problematic when the back wheel of the buggy fell off in the bird enclosure! After some help from a passer-by to hold up the wobbly buggy, we managed to get the wheel back on! Despite all this, we had a great time!April is our milestone month as Daisy was born on the 15th. It makes you pause and truly reflect on how far we’ve all come. When you have lived by the minute, hour, day, week, month, when you are finally able to start counting in years then it is unbelievable. We have held bedside vigils and prayed for just a bit more time together – this never leaves us. I find myself constantly thinking about those times and replaying them in my mind or in my dreams – I seem to carry them with me all the time. Because of this, we never take for granted the fact that we’ve had Daisy for another whole year! When it’s birthday time we try to celebrate as much as we can! I can’t believe I’m writing this but our gorgeous girl is 4!! Yes, 4 years old!!We had another fabulous party at The Space Centre in Preston with Daisy’s cousins and friends on Sunday 10th April. We were so glad that people came to celebrate with Daisy and I think fun was had by all. There were definitely lots of people careering down the padded slide and that was just the parents! It really is a brilliant place where Daisy can be on a more level playing field with the other children and can be part of the fun instead of watching from the sidelines.Daisy enjoyed the company of Mickey and Minnie for the rest birthday week. She loved watching them and I think she carried off the ears and red bow very well indeed!Daisy enjoyed a ‘birthday eve’ visit to the soft play centre with her youngest cousins. They were very keen to send the birthday girl down the toboggan. Daisy was equally as happy to oblige!On 15th April we could celebrate her actual birthday with a bit of an open house for well wishers and present deliverers! Daisy enjoyed opening her cards and gifts (with a bit of cousinly assistance!).As you can see from the pictures, Daisy was a very lucky girl and received so many lovely cards, messages and gifts. It was all a bit too much in the end and she fell fast sleep on the mat in front of her present haul! Apologies for being self indulgent but I always find a sense of relief in the quiet time at the end of her birthday. I long to celebrate another birthday with her all year then when it comes around I find it a day of smiling and laughter but also feeling a bit broken inside. I’ve never found it easy to deal with and can’t really explain it very well – a mixture of guilt, anger, fear and deep sadness. Despite all this, I have a sense of overwhelming pride in my AMAZING daughter! She is 4 years old!! The girl who I have sat beside willing her to pull through is 4 years old!!With the rollercoaster weather this month we have tried to make the most of the sunny days. We’ve had a couple of lovely trips to Pennington Flash. We really enjoy following the paths to visit all the nature hides to see what we can spot (and occasionally torment the professional twitchers that don’t want children interrupting their viewing!). Daisy thought the roundabout was very funny and loves the bracing breeze that comes across the water!With the strike action this week, we called on the services of an up and coming medical team…Dr Kian and Nurse Lily! As soon as Daisy got home from school her cousins said ‘Daisy’s here so we can play doctors’. They rushed straight for the bag and gave her a thorough examination – arguably as good as many of the junior doctors we have encountered over the last four years! Nurse Lily was incharge of physio and hand warming! Doctor Kian was drawing up ‘medicine’ in the syringes and listening to Daisy’s chest! The going rate for this duo is an angel slice! Bargain!We have some new additions to the Team Daisy family…five caterpillars! Daisy got them for her birthday and has been keeping a very close eye on them. They have lived up to their ‘hungry’ reputation and grown A LOT this week. Hopefully we’ll be able to give you some more updates on these next week as they each start forming a chrysalis. Exciting stuff!Have a wonderful bank holiday weekend – despite the weather! x

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