Nearly the end of the summer holidays which are never as bad as I think they’re going to be! Ayden has been enjoying some good trips with the Young Carers organisation which have been a lifeline for him as he rarely gets anything that’s just for him. Also managed to get away with just Ayden on a weekend adventure holiday in Devon which we both enjoyed immensely. It’s so important to make sure enough time is spent individually with both boys which isn’t always easy. We’re also getting ready to go on our first family holiday for the past three years which is incredibly exciting. Google the Ty Glyn Davis Trust – it’s a disabled cottage in Wales and looks amazing – full(ish) report when we’re back.
Charity shops are going really well and management problem now solved as we have two new staff members on board which has made a hell of a difference. One of them is also doing all the charity accounts and we’ve also got on board a full time voluntary fundraiser so my work load is looking lighter day by day (at last!!) so will just have to think up more stuff to do which prob won’t be too difficult!
So all in all pretty happy times in our household both domestic and work wise. Let’s just hope it stays that way for a bit anyway.
Well, it’s certainly been a long time since I last posted and wish it was happier news prompting this. Have just heard that Hratch Ogali, www.mindinstructor.com, who has been instrumental in helping Alex maintain and improve his condition during his ALD, died suddenly last Friday. Although we had not been to his clinic for some time due to Alex being unable to travel, we were just reaching the point when we could return – a cruel irony. We have always had huge respect, overwhelming gratitude and a deep emotion both to Hratch and his ways and to his amazing family and think of them often. We are so happy to have known them and look forward to seeing where the Mind Clinic, Hratch’s legacy to us all, goes from here.
So, finally getting back to writing the blog! Life is never dull here – Ayden’s birthday went really well. We trialled an animal experience for his party (we’ll be using them at the weekend get together as part of the kid’s entertainment) – went really, really well and he had a great time. Alex slept through most of it but did grace us with his presence at the end! Finally got the hoist repaired and ot came to see us so things moving forward slowly. Pressure sore getting there so hope to have Alex up and about for more than an hour at a time by his birthday (May). Still battling with paperwork although did manage to get personal stuff done to a point although forgetting to pay a parking ticket has proved an expensive mistake… Lots of charity stuff still outstanding but most important things done – situation not improved by loss of yet another shop manager. Benefits agency have informed her that she’ll be financially better off on benefits so she should stop working as soon as she can – what a wonderful government we have (not). Luckily we have a lot of reliable volunteers who can step in for the meantime. So, a lot of sorting out to do so I’d better get back to it! Think I should become a complaints consultant in my spare time…..getting far too much practice at it!
Today is the day before Ayden’s 10th birthday. Tomorrow we’re going to see Avatar 3d and throwing caution and Alex’s pressure sore to the wind and taking him along too as Ayden refuses to go without him! We’re still chasing the hoist repair, the ot appointment but have had the continence assessment and new, hopefully better pads are on the way. Had a really crap day on Sunday as our care package fell apart (not for the first or last time I s’pose) and we had no nurse at all despite our rota stating we had one booked. Great to have the boys to myself but I had promised my elderly Grandmother we’d bring her over for dinner as the boys haven’t seen her in a while (she’s in a care home) and we couldn’t do it. So very cross as she doesn’t get out much and hates where she’s living; not yet been able to contact social services in case I shout too much – that’s one for later this week when I’ve calmed down a bit. Finally finished the charity accounts today (hooray!) so that’s one thing off the list. Just got to get the funding for the weekend get together sorted but nearly there. Perhaps I can address my personal paperwork then! Sure it’s only bills though so nothing too urgent…. Off to get Ayden from school now and “daily” diary entries already falling apart but will pick up again when I can.
I thought it might be a good idea to make a regular record of life in our household as we are a fairly typical family with ALD. Hopefully it will give people an idea of what our life is like and help to highlight the difficulties of living with this illness.
To start I’ll give a “brief” summary of life to date!
I have two boys with ALD, Alex and Ayden. Alex was seven when diagnosed back in 2001 and quickly deteriorated to complete dependency. He is still with us today for which we are eternally grateful. Ayden was one when diagnosed shortly after Alex and had a bone marrow transplant in May 2008 as the beginnings of ALD deterioration had been spotted in a routine MRI scan. Although he had many complications during the transplant and took a long time to recover he is now back at school full time and we’ll get the all clear with him in May this year.
During the past nine years of living with ALD we’ve had many, many ups and downs. Both boys have had an incredibly tough time and we’re really looking forward to an incident free 2010. After Ayden’s bone marrow transplant we then had to endure Alex having spinal surgery to correct chronic spinal curvature which was preventing him from sitting in his wheelchair. He had his operation in September 2009 and just when we thought we’d got back to normal he developed a pressure sore which we are desperately trying to heal with all possible concoctions so he can have more than an hour out of bed at a time. Considering he’s been bed bound for near enough the past 18 months, it’s frustrating to say the least.
Today’s goals are to chase getting Alex’s bedroom hoist fixed as it keeps stopping and starting and makes horrendous noises when going along the track! Take Alex to a hospital appointment for an expert opinion for a personal injury claim dating back five years when he returned from school with a broken leg. Chase occupational therapy for a reassessment as our house is shrinking around us as the boys grow and Alex’s equipment badly needs updating. Have a review by the continence nurse as the new “better” (and I’m sure much cheaper) pads they have given Alex leak and cause him to sweat which is not good for his pressure sore and probably adds to the risk. Take Ayden to a play therapy session to help him deal with his feelings about his life and ALD. Oh yes, and to have my hair cut!