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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