Yep. 2019 is gonna be busy year for us! 3 are becoming 4. SURPRISE! We are very excited... now that we have overcome the shock. We have always been very honest about our journey; the good, the bad, and the ugly (crying). So we thought we would share our little snippet of news and shed … Continue reading A Christmas Miracle.
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2019, Fundraising and Marvin the Monitor
Happy New Year! Apologies for the lack of updates, we spent the Christmas period cocooned in our little family unit and then have since been trying to get back into the swing of things... and trying to fit into our clothes following a few too many Christmas carbs... Mr T is doing well. He was … Continue reading 2019, Fundraising and Marvin the Monitor
‘Un-Super Saturday’
We had quite a busy Saturday planned yesterday: swimming, hair cut for T (as he looks like Wurzel Gumage), parcel pick ups, visit to Great-Grandma and finishing with a family take-away and the Strictly Final (natch). T had his swimming lesson as normal. His wonderful teacher checked how his week and general well-being was, as … Continue reading ‘Un-Super Saturday’
Hopes, dreams and wheelies.
This week I had a meeting at T's school to review his school support plan. It was quite a large meeting: myself, Miss E - the lovely school SENCO, an Assistant SENCO (who was equally lovely but I have forgotten her name... if you are reading this I apologise. You really are wonderful, but I … Continue reading Hopes, dreams and wheelies.
No wishes needed… and toilets in jail.
Well, we've had a relatively quiet few weeks in Riley Land in terms of appointments and specialists. We are currently in that lovely place named 'Limbo'. We are still awaiting the results of T's detailed heart scan and still also awaiting his appointment to come through for the Ataxia clinic at Great Ormond Street. In … Continue reading No wishes needed… and toilets in jail.
You have one, so you may as well be one… The story of a Lamborghini, a big heart and an ‘Emotional Firing Line’.
Well, the past few weeks have definitely been busy ones. We took our first trip to Leeds for T to have his 'Detailed Heart Scan'... and detailed it was! We were in with the very nice Sonographer for nearly an hour, and he was able to use an advanced machine to look in detail at … Continue reading You have one, so you may as well be one… The story of a Lamborghini, a big heart and an ‘Emotional Firing Line’.
There aren’t enough words.
The most common thing J and I are asked, is how we cope with everything that is happening to T. The truth of the matter is, that we don't. Not really. In a few weeks time, it will mark a year since we received T's initial diagnosis of Friedreichs Ataxia; and looking back, it really … Continue reading There aren’t enough words.
1 step back, and 6 swims forward…
T has had swimming lessons on and off for a few years now. Its has never been an easy journey for him in the water, and has quite frequently left him frustrated and disheartened. As he's got older, finding swimming aids that don't look as if they are designed for a 5 year old has … Continue reading 1 step back, and 6 swims forward…
Reports, appeals and ‘Being 9’.
Following the advice of our medical team, we recently spent a considerable amount of time filling out forms to apply for some additional support for T; and to help us to continue to make adaptations to our house/general every day life. The forms were incredibly personal and very hard to complete. Now when I say … Continue reading Reports, appeals and ‘Being 9’.
Black Thursday.
This week has seen T have his first major emotional reaction to his medical conditions. As a family, we have had many emotional responses to the ever unfolding events, however, this has been the first time it seems to have significantly hit T. And hit him it did. Like a HGV. We were getting ready … Continue reading Black Thursday.
