Monday 19 May 2014

What a team!

Well what can I say about yesterday?

I've tried thinking of suitable words; Proud, emotional, humbled, grateful, tearful... but nothing comes close to explaining how I really felt seeing everyone, runners of all abilities, in their green Running for Rosie & Friends 2014 T-Shirts, pushing themselves around the 10km Great Manchester course in blistering heat – all for South Manchester DS Support Group. Okay some may say "it wasn't THAT hot" or, "I've ran in hotter weather" however the problem lay with the fact the temperature had increased by at least 10 degrees to those everyone had been used to training in, so it was a big deal for the vast majority of people out on the course. The ambulances and constant flow of paramedics on bikes was all the evidence needed to prove that. It really was a titanic effort from 'Team Running for Rosie & Friends 2014' and the post run meet up and drinks in the sunshine were a very welcome reward!

The main achievement came when I realised we had smashed our initial fundraising target of £2500. At the time of writing this we are at a staggering £3180 and counting...! The donation page for this event is open for another 4 weeks so if you'd like to donate you can still do so by clicking this link:

Thank you so much to everyone who not only ran but to each and everyone of you who so generously donated to a cause so close to us, especially in these difficult financial times. Also a special thank you to Anytime After 9 Ltd for so kindly financing our brilliant T-Shirts!

In this instance I think photo's speak louder than words so I leave you with a selection of our images from the day which should hopefully illustrate the effort we went to as well as the fun we had!

Monday 12 May 2014

Taking a stroll

In true Rosie fashion any worries and anxieties raised in last weeks post were swiftly put to one side (for a short while at least) when she walked across the room for the very first time with the aid of a baby stroller in front of 'Mummy' and her physiotherapist.

Karen quickly caught the moment on video and sent it through to me at work with the message "Look at our girl!”. I assumed it would be a clip of her standing up holding onto the stroller before dropping to her bum, but when I played the video (edited version below) and saw her walk across the room I'm a little red faced to admit that my jaw dropped and the tears came on, full flow whilst sat at my desk! I had to run out of the studio to compose myself and then proceeded to watch it over and over for the next five minutes! 

I really didn't anticipate seeing her do this anytime soon due to her legs and arms still appearing so weak because of her hyper-mobile joints. She has obviously moved on much quicker than I had thought as this huge step shows in itself the improvement of strength to both her legs and arms.

I'd like to end this post by sharing one of the simplest and most precious moments I've known yet as a parent...

Yesterday morning (as is often the case of a weekend), the kids all piled into our bed and we were chatting, having fun, giggling along with Rosie when Joe just suddenly turned to Karen and said:

"Thank you Mummy".

"What for?" replied Karen.

"Rosie" he said.

Rosie-Strolling from The Future's Rosie on Vimeo.

Wednesday 7 May 2014

Ever felt like pulling your hair out?

..."Might be a bit of a struggle in your case Tom!" I hear you say. However for Rosie things are a bit different. To be honest with you this post doubles up as a cry for help/advice/reassurance as much as anything else.

We have started to notice recently that Rosie's hair has started to thin at the front and a few scabs have appeared in the same area. It hasn't been until the last couple of days we've really noticed she has definitely lost hair and is developing a bald patch.

It was difficult to tell for sure how this was occurring until yesterday when our suspicions became evident – Rosie is pulling her own hair out. Karen came into the room and saw Rosie pulling at her hair and noticed a big clump of hair lay out in front of her.

As you do (not always the best advice) but instinct often takes you to Google to see what the cause may be. I'd love to say she's trying to look like me but joking aside it's clearly more concerning.

We had two thoughts initially, one that she may have an irritation on her scalp (hence the little scabs) and she's trying to attack it, itch it but grabbing at her hair too OR she has some deeper underlying issue. Google took me to something called 'Trichotillomania'.

From "Trichotillomania (also referred to as TTM or "trich") is currently defined as an impulse control disorder but there are still questions about how it should be classified. It may seem to resemble a habit, an addiction, a tic disorder or obsessive-compulsive disorder. Most recently, it is being conceptualized as part of a family of "body-focused repetitive behaviors" (BFRBs) along with skin picking and nail biting."

This morning Karen took Rosie to the doctors and both our suspicions were discussed as a possibility. Obviously our hope is that she has nothing more than a rash and the antifungal shampoo she has been prescribed will clear it up, relieving any irritation, however we have to think of the possibility of it being a behavioural disorder of sorts and how we might help distract her, prevent, or teach her to stop before it has a permanent lasting effect on her hair. Obviously the fact Rosie is very young and has Down's syndrome makes reasoning with her almost impossible at this stage.

If you have any experiences of something similar, any advice or better still reassurance it would be very much appreciated!