Owain–5 years on

The 4th March 2009 seems such a long time ago and that’s because it is, 5 years to be exact!  It was the day that we received the news from Addenbrookes Hospital that both Owain’s chest and abdomen were both clear of any traces of cancer!  A great day!

Since then Owain has had regular check-ups at the Norfolk and Norwich University Hospital.  So far this year he has had a number of appointments for blood and kidney tests and a heart scan.  Today we were back at the hospital to get the results of these recent tests and for a quick check-up.  5 years on and the news is that everything remains great with Owain.  There were no issues from any of the tests and Owain remains free from cancer!

Owain is leading a full and active life, just like any other 15 year old and he enjoys playing tennis and table tennis weekly.  Also, he recently took part in Aylsham High Schools fantastic production of Carousel for which he had to attend a lot of rehearsals since September.

We thank God for his healing touch upon Owain’s body and that He has blessed us with this wonderful young man.

Happy New Year

So it has been a few months since I last blogged - apologies!


The thing is with living with FSHD, my muscles don't appear to change on a day to day basis but when looking back, they have continued to deteriorate over the last few months.


I have had several medical appointments and reviews in the last couple of months including one with Wheelchair services. I now have a light weight, self propelling wheelchair to use. This is mainly for use in the classroom to limit my risk of falling.  Thursday was the first time I used it properly for my session and it went ok, although I am going to have to be really organised before I get in my chair each session! I am also using it, to be pushed in, when we want to go somewhere which involves walking further that I can manage comfortably.


Also, on Thursday, after previously failed attempts, I had my application for a blue badge for disabled car parking approved! This will make a big difference when going somewhere in my car and maintaining my independence.  I can still manage to go to town by myself as long as I park in the square, use my stick for walking and don't attempt to carry too much shopping! I am very grateful for online shopping and Dennis (our local fruit and veg man) who delivers to our house too!


At my review in December with my rehabilitation team Peter and I were encouraged to think long term about our living arrangements.  Adaptations can take a really long time to apply for and be put in place so we need to look at what we might need to do for the future now, whether that be moving house, extending etc.  I do find it hard looking ahead as it is unknown - FSHD does not follow a regular pattern of progression and I also know that God can heal me at any time too.  Through all of this we continue to be amazed at God's peace, grace and provision for us.


Sue
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Summer 2013

We are coming to the end of the summer and I realised, and was reminded, that I haven't blogged for ages!

It has been great having the independence of driving wherever I need to or want to again, especially during the summer holidays. We have been able to visit family and friends without having to plan for Peter to drop us off and find time around work. I am now driving without thinking with my hands, if you know what I mean!

We had a great week at Newday camp at the Norfolk Showground with our youth group from church. I managed the camping - the airbed was actually really comfortable to sleep on but  I could not move/climb on it or get off it without Peter's help. We decided to hire a wheelchair for the week to save my energy for walking around the site. This made a massive difference in time and energy saved, but mentally it took some adjusting to!

Another highlight of the summer was our nephew Joshua's wedding to Nikki. It was a great family day celebrating with them and I managed to wear my heels too! Actually heels are really good at holding my foot in place so walking is as ok as it normally is, it's just further to fall if I lose my balance. My general balance is still quite good but my inability to step backwards to maintain balance is my biggest problem hence I have spent quite a bit of the summer falling back onto my bottom and being pulled back up by whichever family member is around!

I have been clearing out the cupboard in the spare room this week and came across lots of old photos. Here are a couple of things I used to be able to do when my muscles worked!! (Ok and it was nearly 20 years ago too...!)

 

 

 

 

 

 

 

 

 

 

One sport I discovered I can still do is putting. On a visit to Southwold I beat the rest of my family!

 

 

 

 

 

 

Yasmin got her GCSE results last week, and Owain got some for this year too.  They both did really well and as very proud parents we took them to Harry Potter Studios for a surprise trip to celebrate the next day!