Well, as you may of guessed from the title, we have now moved home. We now live on the wonderful island of Shapinsay in Orkney, full of beautiful scenery and more importantly, surrounded by a community of wonderful islanders. Life here is incredible. My breathing has improved a lot since we arrived and no longer is it a constant struggle to breathe.
We live in a beautiful big house with a huge garden, well, several gardens actually. I have enjoyed a tremendous summer holiday from school, climbing rocky cliffs, walking endless beaches with crystal clear water lapping round my feet whilst watching seals and dolphins play in the sea as well as enjoying countless boat rides to mainland and exploring the city of Kirkwall.
Shortly, I will start at my new school, Kirkwall Grammar, where due to differences in the English and Scottish education systems, I will be in the first year at high school...again! Deja Vu!
So even though I still have the intestinal lymphangiectasia to deal with and the associated immune deficiency, fat free diet, endless injections and a carrier bag full of medication to take each month, as well as the polyposis developing in my intestines that will eventually turn cancerous without major surgery... I am currently living life to the full, and will continue to do so as long as possible.
And when the day comes when i need to have the several operations to rebuild my insides, i will face it with all the strength in the world... knowing that when i return home from hospital to recover, i will be returning to one of the most beautiful places on earth.
God bless you all... and keep smiling.
May 2016.
Well, it's been an eventful time since I last updated the site. On a positive note, my Mum is much better now. Last year was a very bad time for her and after falling to a little over 4 stone (56lb) and her heart almost stopping, she was rushed into hospital for an emergency blood transfusion of 4 pints!
They found that she had an 'unexplained internal bleed' in her intestines, which they never did get to the bottom of, but after the transfusion, my Mum returned home from hospital with the appetite of a horse and has now doubled her weight. (Due in part she thinks to stopping one of the tablets the doctors were giving her, which had side effects of 'unexplained internal bleeding' ....go figure ) She now looks amazing. She is happy, lively, goes out more and most of all...she's my Mum again! I have also been doing reasonably well with my illness of Intestinal Lymphangiectasia, with the immuno-globulins now being delivered by 'Calea Homecare', my injections are able to be given on a more regular basis at home. However..... there is also some not so great news... You remember me telling you that my Mum's illness (FAP or Polyposis Coli) although completely unrelated to my illness, is an inherited illness with a 50/50 chance of passing on to each of her children?...well.. my elder sister was tested and found to be all clear. I was then tested last month.....and unfortunately, I have inherited it. In straightforward terms, that means that my own illness affects the whole of my small intestines, leaving only my large intestines in good working order. My new illness, FAP, means that at some point in the near future, my entire large intestines will have to be surgically removed before cancerous polyps form inside them.
I have also developed mild "Harrison's Sulcus", a chest deformity caused by either/or mineral malabsorption and chronic asthma!
