Return of The Bear

I’ve been away for a bit, sorry. Not away away, just away from blogging. Everything has been ok, ish, but as Samuel’s seizures have been all over the place which has now led to an increase in both his Clobazam and Vigabatrin doses, plus starting to plan fundraising activities while also trying to reclaim my craft mojo, didn’t feel like there was much room left in my brain for the blog!


We’ve been getting to know some of our Julia’s House friends better. This is little Eiden. Eiden is 2 years old and has complex problems including cleft palate, scoliosis, hypermobile joints, developmental delay and gastroeosophagal reflux. But more importantly he is extremely cute, cuddly and very bendy!


Samuel recently hit a milestone. He had his first salon haircut (and only his second haircut ever). He wasn’t particularly bothered by the experience as he snoozed all the way through!


Heavy snow meant that Samuel’s Dad’s school had to close which gave Samuel a bonus day of Daddy cuddles!


We’ve started to plan fundraising activities this year for Samuel. We hope to raise money to be able to buy Samuel some special toys and equipment to make his world more fun and comfortable.


This is a P Pod chair and one of the first things we want to get with the money we raise

Coming up, we are hoping to be approved for funding to get Samuel a special standing frame. I’m preparing to go into battle with the wheelchair unit to get Samuel a better buggy. We will also be trialing a sleep system next as Samuel’s position overnight is quite poor and I’m going to be trained this week on how to use suction for us to use at home, just for when Samuel has a heavy phlegmy cough and cold.

Oh and by the way, ‘The Bear’? That would be Samuel. He’s our real-life bear.


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