Ryan's first cast- how HemiChat has helped make it a positive experience

Running update:
Please don't panic if you've donated and spot that I'm not on track yet to hit 1000k by the end of the year. As I'd said before, the bulk of my miles will come in the spring/summer! :) Last week it was a poorly Lucas and a very sore neck/shoulder from having said poorly boy sleeping next to me that has kept me off the road. Hoping to get out Wednesday if the pain is gone. I'm enjoying my runs when I get to do them, looking forward to lighter evenings which will get me out much more often.


So today Ryan had his first go at serial casting. Now technically it's not going to be 'serial' this time, as he'll only have the cast on for a week to get used to the idea of it for when he has it again down the line. Typically, the cast is swapped for a new one each week over a period of 3-4 weeks, sometimes more. Each time they stretch a little bit further when a new cast is put on. But for Ryan, it's just a week. Here's a good link that explains more about serial casting if you're interested: http://www.sjbhealth.org/body_childrens.cfm?id=1012

To give you an idea of HemiChat in action and how important they are to the people they support, here's how they've helped us as a family understand and be prepared for today and the week ahead.

*posts on our Facebook group about serial casting come up often. Both photos and updates from those who are currently in casts, and questions from those about to go through it. This summer when Lucas broke his leg, I knew just where to go to ask about waterproof covers for his cast. I had instant answers! And was prepared for this week with both a waterproof sock for outdoors, and a cover for in the bath.

When I posted about Ryan being casted this week, I had answers to my questions and lovely offers of said waterproof items if they were needed. I know if there are questions this week, I have somewhere to turn if those questions aren't necessarily ones that need answered by his physio. I felt so much more prepared going in today than I would have done if I didn't have HemiChat.

*Ryan was able to see another child in casts at a recent meet up. We were able to show him what they were like and talk to him about how he'd be able to walk/run, etc. just like he usually does. He was more prepared for today knowing what he was getting done. It did help having had a brother in a cast this summer too, though I don't want to do that again EVER.

*We had Henry HemiBear with us. Henry and his sister Hope travel round to the hemi children and stay for a few weeks to visit and be there for special events or appointments. They each have a bear-sized splint, cast, wheelchair, crutches and arm brace if needed. Ryan had Henry last year for a few weeks and was so excited to have him come and stay again. He was able to take him into school today, and when Ryan got his cast on, Henry got one on too. :) Volunteers from the charity oversee the bears and organise who they go to and when- I'm lucky to be looking after Henry for a bit and can't wait to make other children happy when we send him on. :)

Here's Ryan and Henry last week, and today with their new casts.

Your support means so much to us, thanks for reading and more soon!!
x

What it's all about

Well, my weekend runs didn't happen due to various children activities.... but all at school/nursery tomorrow and for the rest of the week so will actually have time!! Hoping for sunshine this time too.

For this post, I've copied 'my story' from my Just Giving page. Not that I don't want you to have a nosey over there ;) but so that the why I'm doing this stuff is on here too. :) And I can add a few pics of Ryan!

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Hemiplegia is a form of cerebral palsy that is said to affect 1 in 1000 children. It affects one side of the body, and can be caused by many things. In our case, a stroke around the time of birth, caused by a blood clot detatching from the placenta and travelling to his brain is what we've been told the most likely cause is.
3 years ago I'd not heard of hemiplegia. Or even thought that babies could have strokes. We had  3yr old Natalie, Ryan had just turned 2, and Lucas was still a bump due in 6wks. Then we were sat down and told to see our doctor, and shown how Ryan holds his arm bent up by his side. 2yrs, and we'd never noticed. 2 minutes of watching him after it was pointed out, and it was so obvious. Our world was turned upside down.

8 months of doctors, physio, orthotics, lots of worry and questions (and a newborn!!) followed before Ryan had an MRI which confirmed that there was damage in his left brain, causing right hemiplegia. It was devestating to know for sure, but at least we could move forward in working out how best to help him with life ahead.
Problem was, while there were good informative resources about hemiplegia, living with it, having a child with it, support for schools, etc...... there weren't really other parents to talk to who understood what we were going through or could answer the questions that we had. At that stage, we also had the blow that Ryan had coeliac disease, and then followed months of more doctors, dietitians, adapting to going gluten free.... thankfully there were several good online support groups, I learned a lot quickly and had help when it was needed. (but that is another story for another fundraising challenge! :) )

Once things finally settled a bit, I was fortunate to find Hemi Chat. I'd seen it before, but was nervous about taking that step to contact them and join- I am so glad that I did. Hemi Chat provides a private, secure, and supportive group for parents of children with hemiplegia. Suddenly there were answers to my questions about what socks are good for under a splint, or what games are good for using 2 hands. Especially the all important- how on earth are we going to find shoes to fit over that thing, and do we we really have to buy 2 different sizes?!!?! And there were other parents who understood what it was like to have a physically shattered but mentally stimulated child, when many others just didn't get it. People I could talk to who got that a trip to the park in the morning meant staying in for the afternoon just so we didn't overdo it and struggle the next day, people who didn't look at him and say 'we'll he looks fine to me, there's nothing wrong with him', and people who I could talk to about the big scary unknown that was 'school'.

Through Hemi Chat we were introduced to CP (cerebral palsy) specific football, which Ryan adores. He's made a particular little friend, who even though we only see him a few times a year, they have such fun together. :) We've had a family day to Thomas Land, where we got to spend the day with other families like us, meet new friends and have fun on all the rides. All funded by Hemi Chat. We've been to the Thinktank with some hemi families, where we were met by our lovely patron, Paralympic legend Sascha Kindred. He's Ryan's hero, so getting to spend the day with him was amazing.

I'm raising money for Hemi Chat so these types of meets can continue to happen. Members all over the country get together for all sorts of things, and everyone always has a great time. The children get to spend time together, the adults get to have a laugh while watching our children make new friendships. When we then go online and talk, it makes things more real when you're 'speaking' to someone you've actually met. As Ryan grows, the friendships he's starting now will be important to him. He'll grow up knowing he's not the only one who wears splints, or gets tired quickly, or falls a lot, or needs a wheelchair when we go on longer walks/on the school run sometimes..... he can grumble about having to do phsyio at home and school, having to wear casts sometimes and leg braces every day (to stretch muscles), and how we're always reminding  him to use his right hand!!

Ryan will always have hemiplegia. It doesn't go away. It doesn't get 'worse', but things will change as he grows and possibly affect him more during growth spurts, or when he's ill. In the nearly 3yrs since it was first picked up it's more obvious to us than it was and his muscles are tighter than they were. But he's still our gorgeous, clever, cheeky monkey that loves life, fire engines, swimming, and tormenting his little brother and we love him loads. :) There will be a lot of questions over the years as he grows and changes from both us and Ryan, so please help us continue to have the support we have now by helping me raise funds for Hemi Chat! Click the video to hear our amazing song and see some of the children you'll be helping!

I'll be running 1000k this year- this will include both races and training. I'll update you when I can about races I'm doing and how I'm getting on with the distance goal. Those who know me will realise that I love running, but fitting in approx. 11 miles a week with my 3 children (did we mention that Ryan doesn't sleep so well?!?!!) will be a challenge!!! But one that I'm proud to take part in. :)

The 'grand plan'

Well, I'm 2 runs in and both have been rather soggy so far..... but otherwise things are going well and I've run over 10k so far!

You might have noticed that my counter at the top is showing in miles rather than kilometers. There's two reasons for this- the first is that I can't find a widget that tracks in kilometers yet, but I am looking!! The second is that despite living in the UK for over 13 years, I'm still American- more importantly, my brain still thinks American.... and I learned to work in miles. All the years I used to run, I worked in miles.  Runkeeper tracks my workouts in miles... you see where I'm going with this!

So why the 1000k challenge then? Quite honestly- 1000 miles scared the crap out of me!! 1000k is just over 621 miles, and sounded much more realistic, and I do live in the UK...... I will say though that if I get to 6 months in and am doing ok, then I might just push for the 1000 miles after all, but we'll stick with kilometers for now!!

This means that for the British-minded readers, you'll have to do a little converting, but I've helpfully added a conversion widget to the bottom of the blog to help you!! I'll try and update my blog posts with both miles and kilometers, but please forgive me if I talk mostly in miles. :)


Having established that..... my plan for meeting my target is to run 3-4 times a week as much as I can. To keep me motivated, I'm entering races that I'm interested in and training for those. If you look down on the right, you'll see the ones I'm entered in so far. The Malvern half will be a big challenge for me, as I've not raced that far before, but my training will get some long distances in that will help move me towards the 1000k goal.

Right now I'm training for the Golden Gallop 10k in Feb. I'll admit that the 16wk training program (courtesy of Runkeeper!) I 'started' 2 months ago has been rather neglected due to a sore hip.... so I'm skipping through the workouts a bit for the next 6wks and hoping to get up to the distances I need before the big race.

I'll try and post at least once a week with how I'm getting on and I'll update my miles counter each time I run. My next post will be about fundraising ideas I'm thinking of -such as a big raffle when I get halfway to my target! You can help for now by sharing my JustGiving page (link on the right) and this blog with friends and family to help me gain support, and by subscribing to the blog so you don't miss any updates.

I've never had a blog before so this is all new territory, but am so excited to take on this challenge to raise funds for the fantastic Hemi Chat. :)

Bye for now!
Emily x