Making memories for our young family as we live with Motor Neurone & Fabry's Disease

Easter mayhem

April 29th, 2017

Easter Holidays – what can I say, in a word, mad.

First up was Patrington Haven and the Nice 2b nice caravan, the site it’s self is brilliant and with great disabled access and facilities. The girls spend most of the time in the pool and are coming on great with swimming. The big news from this was Lilly got to grips with her bike and learnt to ride it, felt quite emotional, more for the fact I couldn’t help.

Unfortunately we had to say goodbye to fellow MND sufferer Lee Newton who was diagnosed a little before myself, it was a hard event for Liz and I, as always we put on a brave face. The MND community never stops amazing me, Lee’s dad came up to us after and said, if we can help at all please let us know. I thought this amazing given 30 minutes earlier he had buried his son.

Next up was Easter egg making, it wasn’t as messy as I thought it would be, both girls did really well with a small hand from Mum. Their creations can be seen below.

Always a favourite of ours, a day at Piglets Farm, the egg hunt was on, with a new play barn made with grain not sand and a disabled portaloo, me in my 4×4 chair it was going to be a great day lol. Joined by my sister and the girl’s cousins it was a good day with an added bonus of a picnic.

Horse riding was thrown in for good measure complete with bare back riding; Poppy thought this was excellent however Lilly thought it was rather scary, none of these outcomes surprised me.

We had another trip to see the guys at Bridlington fire station who wanted to hear the voice they had helped create. They also wanted to see the 4×4 wheelchair. A good time was had by all and Lilly got to play with the fire hose again.

The girls went to their old nursery for a day to give us a break while I went to a hospital appointment at the mnd Clinic in Sheffield. One of my favourite appointments as it is the most productive in terms of how the disease is progressing. It is progressing slow and steady but while lung capacity is up by 5% to 56% which is mainly down to my cough assist, we were looking to the future and asking questions about tracheotomy’s.

Back to the action with a fabulous trip to Eureka, this saw the girls and dad learn some really cool stuff. The best bit by far was the all about me section, the girls had so much fun with the dentist chair and baby ultrasound. It was a great day out and we can go back for free, the disabled facilities are brilliant with great access and a changing places toilet, well done Eureka.

Liz and i managed to find time to go and support are friend Paul Matson, founder of Hull for Hero’s. He also helped on our Diy sos. We also got see our friend Billy Burn from Diy sos, Liz looked amazing and I didn’t scrub up to bad.

We then finished of Easter with a great trip to Dalby Forest, seeing the drone in action and the 4×4 wheelchair. We had a picnic and did a fairy walk, this saw Liz dancing on a log with no shoes on, Lilly and Poppy being besotted by Paul and Amanda’s dogs and with all 5 kids in the river soaking. Good day had by all.

So what’s next? Well to leave a bit of mystery, we are venturing to the land of men in tights, Sherwood forest, immediately after that my flight assessment comes into play, which by the way was better than my last one, CO2 is down, a journey to a land we have never visited before but it is warmer than here lol.

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