We started the new year with a WONDERFUL trip to Harry potter studio tour in London. Oh my, the boys loved it. Dregan was completely in his element - we were there for over 5 hours and it still wasn't long enough. Dregan kept talking to people saying 'Harry Potter is good' - he said 'I do love Harry Potter world, it does make me feel magical.' He had been saving all his money, birthday and Christmas, and had over £250 to spend - he spent every penny and bought some really good things including a video of himself on a broomstick. We were so happy to have had such a great start to the New Year - we need more days like this!!!
The next day it all changed, and we had an appointment with the Neurologist. You will probably have read my last post about Dregans swallow test. Well, it seems the full report had come in, and unfortunately things are a bit more serious that we first thought. Long story short, Dregan is considered 'High Risk' of both aspiration and choking, and we have been advised to have a gastrostomy tube fitted. This has completely floored us, and it has taken almost a month to be able to put it in words. Its a big thing, not only is it life changing for Dregan, but for our whole family...not to mention it is a General Anaesthetic, which can be very dangerous for people with Myotonic Dystrophy.
Even with this risk the Neurologist was very sure that it was the best course of action. When we asked what the risk is - he said 'Its a ticking time bomb'. I have full faith in the specialist. It was something we thought might happen in the future, but we really didn't expect it now.
We are struggling with it - its a big thing, and honestly, its going to be a lot to get used to. I appreciate when people say 'its nothing to worry about', 'its dead easy to do' and all the other positive comments - but it doesn't feel like that right now. It feels like we're already dealing with a lot - and this is a big thing to get our heads round.
Apart from anything else - it feel so cruel. How can we tell a 16 year old who enjoys his food and drink, that he can't eat anymore. How do we tell him we are putting a tube in his belly - Im not taking this one - its the doctors who are saying it so they can take the blame. I don't want him thinking Im doing this to him. Its so bloody unfair!!!!
So yeah, that was a shock!
At the same appointment Dregan had an X-Ray on his belly. He has been having some accidents of late, and it was thought he **might** be constipated. (The Neurologist tried to have a feel, but said he couldn't tell because 'every time I try to feel he tenses his six-pack' - haha! ) I thought this was unlikely, as surely we would know. But again, when the results came through I was shocked.
Myotonic Dystrophy can affect the whole digestive tract, so really it shouldnt come as a surprise that if the top end is deteriorated, the middle bit might be affected too. It seems Dregan is completely full of poop, all the way to where his small intestine meets. He is completely unaware! He hasn't complained at all!!! So, starting tomorrow I have quite an intense course of medicine to give him to 'clear' him out. Because the bowel is likely to be stretched (like a balloon that is inflated for a few weeks and then popped - it goes saggy), it is very possible that it won't go back to normal now, so this is likely to be a long term medication also. People don't like to talk poop - but this is one of the most common effects of the disorder - people just don't like to discuss it. It can be problematic though - it should be talked about more!
So, thats 2 pieces of difficult information - why stop there - lets make it 3!
We had Dregans education review at school - it was a FIVE and a half hour meeting!!! Can you imagine!!! River was so well behaved! Part of the meeting was a report from the educational psychologist. If youve read my earlier posts you may know that the brain is often affected with Myotonic Dystrophy - however to my knowledge there hasn't been any research on congenital children and how the disorder affects the brain. It is widely known that Autism and Learning disability comes with congenital (some 87% I believe) but there is no real knowledge other than this.
The educational psychologist report states that Dregan shows 'a significant intellectual decline over the last 10 years'. It states that he was of 'just below average ability' when he was 6 - and his reports and observations over this time shows a decrease in his cognitive and intellectual ability. We thought perhaps he had got to a certain level, and then stopped progressing as expected and hoped. However, the Ed Psych was quite firm in stating that this is not the case - he is showing real Intellectual decline. He was so forceful because he said it really needs to be taken into consideration when sorting his health and social care for the future, and we have to consider that it is possible he will decline further in the future... Hello bus, nice to see you again - BAM!
I am not being positive, I will be once its all getting sorted and we've accepted it and taken it all in - but right now Im pissed off. 18 months ago he was just recovering from almost dying, 6 weeks in hospital, survived a Cavernous Sinus Thrombosis and Meningitis - I mean, the odds were against him.Not to mention the following weeks where his body shut down while he was getting an Antibiotic Allergy. HE SURVIVED! Not only that - but he survived with no noticable side effects which is almost unheard of.
And then that bus turned the corner! 18 months ago he was recovering, and 'just autistic' - now he has a neuromuscular genetic disorder which is going to shorten his life - possibly significantly. He has deteriorated quite a lot in that last 18months, it SUCKS!
But - he NEVER complains. He NEVER gets upset, he NEVER gets angry and he is almost always happy!
An inspiration.
Its just cruel.
x
Dregan wears Orange for 'Go Orange Friday' and fundraised for The Fight Fund.
www.cmmd.uk
I love your family and I love your strength. I shed some tears and sent some prayers. Writing with honest revelation of the complex emotions of dealing with a degenerative disease takes courage. I appreciate the woman you are and feel the love you have as a mother. You let those doctors tell your boy, and you hold him and love on him. He'll feel what you give him and understand a mother's love. It isn't easy, but God bless those who hope. Every day is worth it. Myotonic dystrophy isn't pretty, and there are many struggles, but your son is not his disease and your family is not defined by struggle. You define it by love. May each day you have be measured by what you can give and receive in our greatest gift of all - our love.
ReplyDeleteI'll be praying for you. :)
Thank you Darcy. I appreciate the lovely words. xxx
ReplyDelete