I didn’t actually realise how long it had been since our last update! In the space of the near 2 months since my last post, T has grown about 7000 inches in height, and also appears to have swallowed an old wise man. He has become… profound. He has all the wisdom of an owl, in the wobbly body of a 10 year old boy. Yesterday he was instructing me on the best methods of speeding things along in labour – as the arrival of Baby Riley is now only a mere 13 weeks away…
T: “Mum, listen. You need to get an exercise ball. Then basically, you sit on it, and bounce up and down and rock a bit. Then the baby comes.”
Me: “Fab, thanks T! I’ll make sure I have one on stand by when I go into labour.”
T: “Erm Mum, why would you go into politics when you are just about to have a baby?!”
I swear, he’s like Gandalf crossed with a completely naive Peter Kay. Gandalf Kay, if you will.
Another corker, was driving home last night after seeing WWE Live (more on that in our next post!) and he announced that he ‘forgot’ to watch Wrestlemania when it was on…
J: “How do you ‘forget’ to watch it T, when you watch wrestling all the time?”
T: “Its ‘time’ Dad. It just goes so fast…”
How right you are Mr T. It truly does fly. So much so, that we are now looking at Secondary School options for young Master Riley. T is currently only in Year 5, but we have been recommended to start looking early, due to the complexity of T’s medical conditions and the support he will require. We FINALLY have a draft through of his Education Healthcare Plan (hurrah!) so this helps, as we can then advise any potential schools on the level of funding they can receive to deliver said support.
Normally, when it comes to selecting a school, the standard process would be to go to some open evenings of the schools within your catchment area and then apply through the local authority. We can still do this, however we have a few more options available to us due to T’s EHCP. Our decision will be based primarily on the school who is going to be able to support him the best – both academically and in terms of his well-being. This is likely to result in a choice that distances him from the majority of his friends at Primary School. Its not 100% confirmed that this will happen, but it is likely. And that sucks. However, T’s wonderful Primary does not just have one or two secondary schools that their students feed into, they will often spread across 5-6 different Secondary schools due to the area the catchment covers. We are hoping that this will make the transition process easier for T, as his friends (there are only 13 children in his whole year group!) will all (probably) be in the same boat. I, however, am traumatised at the very prospect of him leaving his little bubble of comfort… and I think I may need copious amounts of gin when the time comes…
T’s medical team have made some pretty strong recommendations in terms of Secondary education, and J and I visited school number 1 with T’s SENCO the week before last. I was absolutely blown away. The SEN provision at this particular school was nothing short of wonderful. 48 Teaching Assistants, trained physios, a room with facility for T to nap (should he need it), and staff who quite obviously love their job. As a teacher of secondary education, I embarked on the trip with a (shamefully) critical eye, however I had no need to be dubious. Both J and I think this is going to be the best place for T to continue his learning journey. I think it should also be noted as well, that to take on a child with needs as complex as T’s is a challenge for ANY school – and thats not T’s fault, nor the school, its just a realistic view of circumstance. It is a challenge. He will need a lot more physical, emotional and academic support than other students. The team did not seem phased by this in the slightest though. Plus, they also have wheelchair sports. T was BUZZING when we told him about that, as you can imagine. He now can’t wait for a visit… which is the next step! What was a terrifying situation, giving me no end of anxiety, now seems slightly less scary… and hopefully T will feel the same post visit. I’m not ruling out the need for gin when the time comes though, so maybe expect some slightly waffly posts around September 2020.
In other news, T had a review with his Neurologist last week. J took him to this particular appointment as I had exams on at school. Generally a positive visit, however there is now a notable curvature to T’s spine, which is a common symptom of Friedreichs Ataxia, and can have varying levels of severity. T’s lush OT and Physios had already picked up on this and adapted his equipment/exercise routine; however we are now being referred to a spinal specialist. Trying not to ponder that one too much at the min – mainly because we don’t fully know what we are pondering yet! The worrier in me (she’s a bitch I can assure you, she loves worrying about random crap… generally at un-godly hours of the morning) is getting much better at ‘parking’ things until they actually need worrying about. So this one is firmly parked for now. In a multi story car park. In Siberia.
T also needed checking for Diabetes – which again is a common side condition of Friedreichs. Now, in order to do this, the Dr needed either a blood or a urine sample. T had a particularly bad experience the first time he gave a blood sample. The nurse almost dislocated his arm taking it (fun) and so the minute anyone mentions “taking blood” he begins shrieking like a banshee (slight exaggeration perhaps) and muttering incoherently under his breath (not an exaggeration at all). So, J decided that urine was the best course of action. However, Mr T had been to tinkle just before the appointment… so the Nurses held them hostage in the waiting room until ‘tinkle time’ took place…
An hour later, they were still sat there. There were numerous cups of water consumed, the sound of running liquids played, a rain dance from J, many prayers to the Tinkle Gods… but alas, Teej could just not tinkle. Eventually, after much cajoling of the nurses (and probs flirting) from J, they managed to beg release from the waiting room. And now, the sample pot is sat looming on our kitchen windowsill (EMPTY before anyone starts freaking out about hygiene) and we are waiting for a prime opportunity (namely a day when me or J can deliver the sample to the Dr before 2.30pm) to attempt to ‘Trap the Tinkle’ – *insert ominous music*.
I fear this may be easier said than done. The pot is the smallest thing known to man. I swear it was made for a Hobbit. I’m not sure I’m mentally, or physically prepared for this task. Especially as, on unsteady days, T’s aim is as accurate as Newcastle United’s attempts at scoring a goal…
So, if you whiff a musty aroma at some point over the next few days in the Humberside area, you are probably close to me or J… who are more than likely covered in piss. But at least we’ll have a sample! Every cloud and all that…
Its been a busy couple of months in the Riley household! I’ve had my show on at school which means that between growing this teeny tiny human in my uterus, rehearsing at school and snuggling my family, I’ve basically just slept for the remainder of the time… hence the lack of posts! However, I am now post-show and back in the real world!
In the short months since Christmas, quite a lot seems to have happened in the Life of Rileys – but also not a lot at the same time. T seems to have stabilised a bit, following a bit of a low emotional period just after Christmas. Everything seemed to get on top of him a bit and our normally happy, cheery, positive boy was struggling. Luckily, his team have come through again and he is now receiving additional emotional support for this giant rollercoaster which has become his norm.
His school have, yet again been INCREDIBLE, but we are having an increasing amount of discussion surrounding the evidencing of his work. T is a bright little button (too bright for his own good sometimes!), but due to the decline in his writing, he now more or less relies on dictation or a laptop to evidence his school work. This is both frustrating and tiring for him. Chuck into that mix that he is also a 10 (!) year old boy and it makes for a tricky cocktail. The fluctuation of T’s conditions also mean that some days he can be more tired than others so his work rate will consequently be effected. Now the government, in their infinite wisdom, do not really take this into consideration much; and instead place the same never-ending amount of pressure on the school to get T to produce the same amount of work as his peers. Which, quite frankly, is ridiculous. His teachers are being incredible, but we are all desperately trying to formulate a plan to support him as the dreaded SATS loom over the horizon next year.
You may also recall, from earlier posts, that we have been awaiting an Education Health Care Plan for T. It has now been almost 7 months and it is STILL not in place. Not through any fault of the school I might add. This has meant that the school have been receiving no funding at all to provide support for T; instead, stretching their existing staff and resources to do so. Things finally seem to be moving in the right direction, and the school have been awarded some ‘interim funding’ (AT LAST) while we wait for the final plan to come through. This means that an additional staff member can be brought in to deliver physio sessions each morning. Hurrah! I must once again commend T’s school for their unwavering commitment to his education, physical and emotional well-being. At a time when we are starting to look at Secondary Schools (someone cradle me while I sob please), we all wish now, more than ever, that he could complete the remainder of his school days under their outstanding care. It is experiences like ours which Ofsted to not seem to recognise, or deem to be important; which is a disgrace to educational institutions across the country.
On another educational note, T has been elected to represent his school as part of an ‘Educational Academy Trust Board’. He attends termly meetings with representatives from other Academies in the Trust and they discuss how to better their schools, and, education as a whole. The do so over an, ever so British, ‘Afternoon Tea’. He now basically thinks he’s Barack Obama. He has a special ‘lanyard’ which he wears everywhere with immense pride. I’m still not overly convinced that his proposal for ‘more break times’ will go through though…
In shock news, T is now 10. 10 YEARS OLD. A decade of T. And what a bloody awesome decade it has been! He’s had more birthday celebrations than The Queen this year – 3 official events to be precise. A play afternoon and tea party with his friends, dinner out with J and I, and then a trip to Pizza Hut with one of his best mates too. He LOVED it.
If there was ever a dude who deserved a fuss on his birthday though, its this guy. The concept of a ‘party’ however, initially threw up some quandary. All of the activities T has previous loved, and embraced for his birthdays: football, climbing, trampolining etc; are just not suitable any more. When he suggested a play date at home with his friends, this seemed the perfect solution and they all had a whale of a time dancing between the garden and Nerf / Fortnite wars in his room.
This is a general issue we are facing now though. What activities we can do, and places we can go where he won’t feel left out. Over half term, my lovely cousin came to stay with her awesome small people and I spent HOURS trying to find somewhere not too far away (T’s spasms play up if he’s in the car for too long), which was Mean Machine (wheelchair) friendly, and also somewhere all 3 kids could enjoy. We settled on ‘The Deep’ in the end. An aquarium in Hull. I have to say, the disabled facilities there were amazing, and T was able to access all of the attractions in the same way as A and Z. We had lots of fun seeing the different animals – particularly the penguins. They had a ball. The kids that is, not the penguins. Although they looked pretty happy too!
We also ate out, went to see a film in the awesome new ‘luxe’ cinema (reclining in the cinema is the future), and picking out boats on the Marina.
I’m now racking my brains for Easter activities. Suggestions are more than welcomed! There’s only so many trips to the cinema you can make, and only so many ‘walks’ you can go on (and honestly, how many 10 year olds actually want to go on a walk?! Even when being pushed!). The park is bitter sweet, as he can access some of the equipment, but is limited. So this is me touting for ideas. Send them my way! I want this awesome little human to have the best Easter Break ever.
You will all be pleased to know, I now also have a more practical car! Despite my best efforts to persevere with Maurice, my beloved Fiat 500. It was just not to be. Especially as I now need to shoe-horn a pushchair AND a wheelchair into the boot. Poor Baby Riley would have had to be strapped to a roof rack. T’was the only way it would work! So, now that the government have acknowledged that T’s condition isn’t fabricated or causing issues ‘which do not differ from other children of his age’ (honestly that still makes me angry), they have granted us some Mobility Allowance. So, I can now proudly introduce…
KEVIN THE QASHQUI! Or, Kevin the Q-Shaggy as my Mum calls him. Why Q-Shaggy, I have no idea. Apparently this is the correct way to pronounce it according to Lynn.
RIP Maurice. You were a minty dream, but alas, not the dream for us.
Kevin and I are slowly forming a bond, although he’s got a fat ass and its like parking a bus. But still, I’m sure theres things about me that he’s not keen on too, so hey ho.
So thats our news! I now desperately need to remove myself from this sofa and do something productive… probably shower and then put fresh PJs on. Rock and Roll lifestyle at its finest.
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 a little more light on the situation, as more than a few people may be a bit surprised by this news!
I shall explain.
(Apologies in advance, this is a very long, very hormonal post. Feel free to skip to the bottom to the cute pictures of T and new baby Riley…)
Where it all began…
When J and I had been together for about 6 weeks, I received news from the GP, off the back of some standard blood tests, that I would find it nigh on impossible to ever conceive a baby. Apparently I was ‘missing’ some kind of vital hormone. This is not a fun conversation to have when you have only been together 6 weeks. I mean, to be fair, its not a fun conversation to have at any point; but as the majority of our relationship had thus far involved the mutual selling of mobile phones (in the shop where we worked, not in a dodgy ‘Del Boy’ back alley kind of way) and J seeing me in various states of drunkenness dressed as a Ghostbuster/Geordie Chav/Cowgirl (delete where appropriate) as I was still at uni, this was somewhat uncomfortable and very (seemingly) forward thinking. Luckily for me though, he didn’t go running for the hills, and instead comforted me and offered me support like the amazing human he is. A few years on, still going strong, neither of us saw T coming – literally to be fair, even the midwife nearly missed him in labour. He snuck up on us like a stealth ninja. But the best stealth ninja ever. Clearly that ‘missing’ hormone wasn’t as important as everyone thought! And so, T came into our lives. And we were over the moon.
As time ticked on, we started thinking about siblings for T. As my reproductive system clearly kicked ass, we didn’t think this would be an issue! How wrong we were. After many, many, MANY appointments we were eventually referred to the IVF clinic. I will never ever forget the day we sat in the consultants office and he told us that there was no possible way we would ever have another child. It turned out, that I had been through the menopause. I was 28 at the time. To add further insult to injury, it would appear that I wasn’t even in the process, I’d come out the other side. I had old lady ovaries. There was nothing that could be done… except whack me on HRT and turn me into a hormonal psycho. J had a thoroughly enjoyable time during this phase (please detect note of sarcasm). Nothing gave him greater happiness than returning home to find me crying over a sock. Or me trying to hit him with said sock*.
Prunes do not make good ovaries…
At the ‘Menopause Clinic’ (not as weird as it sounds to be fair), I was told that it looked like I had probably started the old ‘meno’ process straight after puberty. That would totally explain the hot flushes age 15… I was offered counselling, which I declined, and continued the rocky (for J – haha) road of finding the right HRT combo to keep me well. If I failed to take a steady course there would be an extremely high chance I would suffer a stroke or a heart attack before the age of 45. It really is the gift that just keeps on giving.
It took me a very long time to come to terms with this. Mainly, I felt guilty for being upset, as so many wonderful people struggle to conceive even one baby, and here I was breaking my heart over not being able to have a second. Please don’t think that this was because I wasn’t grateful for T, because I absolutely was and he was (and continues to be) the light of my life. It just felt, like I was grieving for something. Which I’m aware seems a very odd explanation. I also did not respond well to the HRT at all. I just didn’t feel like myself. I felt like I existed in a fog. I am forever thankful for the support of my incredible family and friends during this period. And to J, and his never ending patience.
After T’s diagnosis, I (stupidly) took myself off the HRT (great plan there Lucy) as I felt that I was experiencing far too many real emotions to cope with additional fake ones shoved in. When I realised how stupid I was being (and several people told me how stupid I was being) I started taking them again. Man alive, that was a rollercoaster of a few weeks while I readjusted. J more or less moved into his office. I was like a psychotic beaver crossed with Eeyore from Winnie the Pooh.
In the midst of all this, I was sent for an ovarian scan as there had been some potential signs of ‘egg life’ (I’m aware that I sound like a science experiment. To be honest, at some point I suspect medical science will have a grand time sorting through my bat shit crazy insides). We were hopeful. The lady who performed the scan was incredibly kind; like a real life Mrs Potts from Beauty and the Beast… but not a teapot, obvs. She talked to me throughout, and then she held my hand when she delivered the results. There was not a single egg follicle. I had 75 year old prune ovaries. They had already retired and moved to a condo in Spain. Cheers, ovaries. You twats.
The addition of the Crohns card…
The past couple of years, we’ve just ticked by. Obviously with everything going on with T, all of this menopause/hormonal shiz has been pushed to one side. I FINALLY found a HRT combo that didn’t turn me in to a nut job (hurrah) and you know most of the rest, if you’ve been keeping up with our adventures. However. A few weeks before Christmas I started feeling nauseous at random points throughout the day. It would never last long, just a few minutes at a time. And it was getting gradually worse. Now to confuse everyone further (and to excite those Medical Scientists again about my weird body), I also have an illness called Crohns Disease. Its a bit complicated. So I shall rely on my good pal Google to explain:
Crohn’s disease is an inflammatory bowel disease(IBD). It causes inflammation of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people.
Google the Oracle – 2019
I was diagnosed at 18. Without wanting to sound like a total drama queen, I have been pretty ill in the past with this bad boy. It a bit of a bitch. I’m missing a good chunk of my intestines and my appendix once disintegrated. Luckily though, thanks to some amazing Drs, some decent surgery and medication, plus the most AWESOME lady named Linda, I have been more or less stable for a decade. I’m not 100% and I never will be, and some days are better than others, but on the whole I’m good. Up until very recently, I would make 4 1/2 hour round trips back to Darlington to see my specialist care team there. Mainly because I trust them. (Plus, I miss the North East accent. I like to hear other people say “boooook” and “coooook” like me. I’m very proud of my North Eastern roots don’t you know!) But those 4 1/2 hour round trips are not practical now, with us trying to facilitate T’s appointments too. I was cancelling left, right and centre. So I decided to move my care to Hull. I was due to see my new specialist the week after New Year. On Boxing Day, the nausea had become so bad I was convinced I was on the cusp of a massive Crohns flare up (these are not fun). I told J about my concerns, and also that I was worried ‘new specialist guy’ wouldn’t investigate said sickness as I am of ‘child bearing age’. Honestly, you can go to the Dr with a twisted ankle, and they’ll still ask if you are pregnant. It doesn’t matter how much you explain that it cannot happen, they still insist on carrying out a blood test to check. I was worried that at this point, it would then be another 6 months before I would see the consultant again, and I would probably have been hospitalised before then.
The surprise of the century…
I had a pregnancy test in J’s car (occasionally, I have neurotic moments where I live in perpetual hope – this was the remainder of one such moment. I know I am weird.) and so I told J I would do said test, photograph the negative result and show the consultant so that my sickness would be properly investigated there and then. And so off I trotted into the toilet with my little pee stick.
And bugger me, it was positive.
I don’t know who was more surprised, me or J.
I cried. J drank whisky. We looked at each other. J looked at the test… then realised he was holding a stick covered in my wee and promptly dropped it. We cuddled. And we sat in total shock.
I did another test the next morning… positive again. We couldn’t work it out. I went to the Dr the same day…
Yeah cheers for that Doc. I was kind of hoping for a few more answers to be honest!
“Its a Christmas miracle!”
That was the best she could come up with.
No-one can explain it. Not the Dr, the Midwifes, my Consultants. No-one.
And so here we are! Our little ‘Christmas Miracle’ has been cooking away merrily for 13 weeks, and so far, so good!
We have many bumps in the road ahead, but for now, we are feeling eternally grateful to be blessed with not just one amazing miracle baby, but two.
We are the luckiest family in the world. Fact.
And of course, if you want to accompany us on this leg of our journey, you are more than welcome.
L, J, T and Tinker (named by T)
*It may have been items somewhat harder than a sock. Don’t judge, it was the ‘mones. And he still loves me.
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 definitely in need of the Christmas break, and following his arrhythmia scare, we have been happy to let him have all the rest he needs. Consequently, his movement has become a little more unsteady and he seems to have developed a bit of a troublesome knee. Luckily, J has administered ‘The Magic Bandage’, so we are hoping for a speedy recovery! Energy levels continue to rise and fall, this was evident over the festive period as Santa delivered a new basketball hoop for the garden – which Mr T was most excited about! After 5 minutes of playing in the garden, we turned to find him lying on the grass totally wiped out. This is unfortunately just the way things are some days. Some days – but not all! Since going back to school, and playing with his friends, he’s definitely perked up a bit. He’s also PUT SOME WEIGHT ON! HALLELUJAH! He’s still more ‘String Bean’ than ‘Chunky Monkey’, however its definitely helping to stabilise him a little more.
The walker (a.k.a. the Zimmer) is not going down well at school. At all. He just doesn’t want to use it. We totally understand why (would you want to use a zimmer frame age 9?) but we are trying to gently ‘coax’ him into it. I may resort to bribery. Don’t judge.
We are also still in limbo in terms of appointments and consultants too. We are still waiting for an appointment to come through for the Ataxia clinic at Great Ormond Street, and we are also still waiting to find out who will be T’s main consultant for his cardiomyopathy. This could be someone in Leeds, or a separate trip to Great Ormond Street. After T’s heart arrhythmia scare before Christmas, this is the area currently causing us the most concern. Things seem to be moving forward a bit though, as T is currently sporting ‘Marvin The Monitor’. A mobile ECG machine that records his heart rhythms for 72 hours.
Now Marvin has to be worn 24 hours a day, and he’s a problematic little critter! A wire was lost in PE on Friday and T was a walking beep machine for the afternoon until his Granddad could fix it. As usual though, T has been awesome, despite the fact that Marvin makes random noises and is somewhat uncomfortable to sleep in. We have to record the exact times T eats, goes to bed, gets up and any activities in between so the Drs completing the analysis have the best understanding possible of any changes. Hopefully once these have been analysed, we should receive a few more answers. The 72 hours are nearly up now, and Marvin will return home in the morning, back to Castle Hill Hospital. Farewell Marvin, we shall miss your beeps.
In other news, our wonderful family have decided to take on a number of challenges to raise money for Ataxia UK in T’s name. Ian, Dr Ems hubby, is running/swimming a different event every month and my lovely Father-In-Law – J Senior, is going to run the Hull 10K in June. J himself has decided to take on a number of running challenges throughout 2019 too. So far he has 5 runs booked in, with a further 2 to be confirmed. All are a mixture of 10k’s and half marathons. If anyone would like to sponsor J, his JustGiving link is below:
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 she does each week, and then delivered an appropriate (and very fun) lesson for T. He performed great, and took regular breaks throughout. At the end of the lesson I took T into the changing room to get dry.
“Mummy, I’m really really tired.”
He could barely lift his head, let alone put on the pants I was brandishing towards him, and then very quickly started turning a worrying shade of grey. I asked him specifically to describe how he was feeling and he told me his heart felt like it was beating very fast. He also said he felt dizzy and might pass out.
His teacher came in to check if he was ok and we gave him a little bit of chocolate to see if this would perk him up, however this had little to no effect. I got T out to the car (massive thanks to everyone who offered help btw – I think I barely acknowledged you at the time but I assure you it is very much appreciated!) and when he was seated in there I called 111.
Now T’s cardiologist said things like this may happen as a result of his Cardiomyopathy, but this is probably the first we have seen it raise its ugly head. The nice lady on the end of the phone advised (after I had spelt ‘Hypertrophic Cardiomyopathy’ and ‘Friedreichs Ataxia’ 3 times over the phone – why they can’t just call them things like ‘Fat Heart Disease’ is beyond me!) that I should take T to A&E immediately, and collect all of his current medication en-route. I had a small panic as he could barely walk and his wheelchair was in my Father-In-Laws boot (as I was planning on collecting that later on too) so I rang to ask him to get it ready, flew home to get his meds and his fave toys, and then bombed to their house for the Mean Machine.
By the time we had got there, T had a little more colour (I would describe it as a ‘bright white’ as apposed to the ‘ghostly grey’ he had previously been sporting) and my lovely Mags-In-Law was waiting, shoes and bag on, out front…
“Can you fit me in?”
Now I must remind you at this point of my little car: Maurice, the minty green Fiat 500. I can barely fit myself and T in with the wheelchair, and even then I have to drive in a somewhat precarious position with my knees under my chin. Unless I strapped Mags to the roof, there was no way she was getting in that car! Luckily my Father-In-Law saved the day and offered to drive us. No roof riding for Mags this time. Think she was a bit gutted really.
By the time we got to the hospital, T was a bit better still and had almost returned to his normal hue. We checked in and then managed to coax him into eating a few snacks and he perked up even more. After 2 hours, we saw the nurse, who completed a general assessment, and then after another 2 hours we moved out of the freezing waiting room and into an actual room, where we saw Dr Andrew.
An ECG was completed and Dr Andrew explained that the most probable cause of T’s turn was a heart arrhythmia due to his Cardiomyopathy; meaning that his heart was beating faster than it could manage. They moved us up to floor 13 for further assessment, and hooked T up to a heart monitor…
By this point we had been in HRI for 5 1/2 hours. T was bored, scared and frustrated. We managed to get the TV working for him (which was god send) and also played endless games of eye spy…
We saw another nurse and gave the same information we had given 4 hours earlier and then after another hour of waiting, saw another Dr…
Now you may be wondering where J was at this point. J had been working in London on Friday and stayed over after his meetings to catch up with his best friend who lives down there. His train back should have seen him land in Hull at 3pm. However, due to the delightful rail strikes, his train terminated in Doncaster, leaving him stranded. So, desperate to get back to join us, he started looking for alternative routes. One train clerk advised going to Leeds to connect from there, and so, that is where he headed… only to get to Leeds and discover the connections from Leeds to be delayed, and then subsequently cancelled. So he then travelled to Selby… and FINALLY managed to board a train to Hull and got to us about 6pm. Honestly, you just couldn’t write the events of yesterday!
The new Dr we saw, went through an explanation similar to that given earlier by Dr Andrew. He said however, that they were all concerned about the suddenness of the arrhythmia and he also said it would not necessarily have been caused by the swimming T had done. The Hypertrophic Cardiomyopathy is condition all of the Drs we saw were aware of, however clearly not something they encounter very often. He said there was a good possibility he may need to stay in and he also wanted to speak with the Cardiology team in Leeds. By this point, T was getting tired, very frightened and desperate to go home. Eventually after more waiting, he came back and agreed to let T come home with us. However, we have to keep a close eye on him and should a similar event happen again, call 999 for a blue light response. One of the main issues with the arrhythmia is that by the time T had got to hospital, his heart rhythms were normal and so they don’t know exactly what type of arrhythmia it was, or how dangerous this could be for T going forward. A Cardiology appointment in Leeds will be sent out in the next few days, and a 72 hour trace completed with a mobile heart monitor.
Mr T has very aptly named yesterday as ‘Un-Super Saturday’; a title it most definitely deserves. As always though, he’s in very good spirits and is back to his chirpy self today. Heres hoping for more of a ‘Super Sunday’.
Massive apologies to anyone who contacted us yesterday who we haven’t responded to; we bedded down in Camp Riley last night to recover with cuddles, rest and a ridiculous amount of comfort food.
And I also apologise to anyone who encounters my son this coming week, he really does look like Wurzel Gumage, and will clearly go to any lengths to get out of a haircut!
p.s. if anyone can tell me what the hell this cat is throwing away, it would be appreciated…
Picture curtesy of T’s room on the Paediatric Assessment Ward.
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 am terrible with names!), Mr W – T’s new class teacher, Mrs B – T’s amazing class TA, and M the OT – who, quite frankly, we adore. These meetings will take place each term to review the care plan in place for T at school. We discuss his ever changing needs, things which are working, and things which are not. In this meeting we also had the addition of a new giant 50,000 page form from the Hull SEN Team, which is now apparently required before his EHCP can be processed. For those not familiar with educational acronyms (honestly, I am a teacher and even I am not familiar with them all), EHCP stands for Educational Health Care Plan. According to the God of all knowledge, aka Google, an EHCP is:
A legal document that describes a child or young person’s special educational, health and social care needs. It explains the extra help that will be given to meet those needs and how that help will support the child or young person to achieve what they want to in their life.
This plan will hopefully open a few more doors for T and also help his wonderful school to help T with his education; and access funding to be able to put strategies in place in order for this to happen. This could be specialist equipment for him, 1 to 1 support or assistance (which will need to increase as his illness progresses) or anything else he, or they, might need.
The paperwork to apply for one of these bad boys is hefty and long winded. Miss E spent months gathering reports, evidence and the required information to be sent off, only to then receive notification that she must now complete another giant form (with the same information she has already submitted) in order for T’s application to be processed. This is both frustrating and ridiculous. In the mean time, T’s school have no access to any funding to further support him. The whole process needs a serious review. They are currently investigating temporary funding as an interim.
T’s school are absolutely incredible (as I have stated before), and we really could not wish for him to be anywhere better. They are so considerate to his needs and well-being, however one of the main issues at the moment is T being able to evidence his academic potential. He is bright as a little button, however, in terms of tests and evidence, this is not reflected in his work. He physically cannot write enough to do this, and typing is equally as slow. Something school have also cited as a developing concern, its T’s mental fatigue. We are all used to T becoming physically tired, however that physical exhaustion is now spilling over into mental exhaustion too. T is a hard working and determined dude, who loves to achieve. Sometimes however, he is simply too tired to learn. This bloody bastard of an illness, is creeping its way into another aspect of T’s life… however, it has underestimated our determination to keep it out! F-Off FA! Not gonna happen this time, you Twatbag. School are investigating alternative methods of differentiating his work and new forms of evidence. ‘Talk to Type’ software will be introduced to allow him to dictate, and scribing can be used in the interim. A new key-guard will be used to help with his typing and his energy levels factored in too. The main difficulty I think we all have with T though, is how far to push him. We still live in ‘Illness Limbo’ and none of us really know how far is too far. I guess we just continue to take each day as it comes.
One aspect of the meeting I found challenging and emotional, was discussing our hopes for the future for Mr T. He had told Miss E earlier in the day, that he wants to be a professional footballer or wrestler when he grows up. Who are we to limit his dreams? What we do know, however, that the future for our amazing little man is full of uncertainty and challenge. Our main hopes for T are that he is able to reach his potential, that he is able to have some independence and, most of all, that he is happy. When push comes to shove though, isn’t happiness what we all want for our children?
Speaking of happiness, T had a particularly exciting day last week. A charity called ‘Go Kids Go’ had contacted the school to offer some ‘Wheelchair Awareness Training’. Basically, they took a class sized collection of wheelchairs into school and delivered practical sessions with both staff and students on wheelchair skills and awareness. They discussed inclusion and introduced activities such as ‘Wheelchair Bulldog’ and ‘Wheelchair Basketball’. For the first time in a long time, T felt exactly the same as everyone else. They all wheeled about together and he LOVED IT. The staff delivered 2 sessions across the morning and T was able to participate in both, acting as a mentor and assistant in the latter. Now those of you who have met T, will know that he’s not exactly shy and retiring… so consequently he got stuck right in showing everyone how to negotiate curbs, score baskets and do wheelies!
He smiled, the teachers smiled and the other children smiled too. It has also opened T’s eyes to some of the other sports he can access in his chair. He is keen to explore this further and so we are going to go along to the ‘Go Kids Go’ activity taster afternoon in January. Apparently me and J also get to wheel about too… I fear I may need ‘L’ plates… if anyone has seen me trying to parallel park I am sure you will agree!
So thats our recent news. Check out Go-Kids-Go if you get a chance: http://www.go-kids-go.org.uk. I’m off to practise my wheelies in preparation for scoring some serious Mum points… just don’t tell T that I pinched his chair to practise*…
*This is highly doubtful as I don’t think I could even fit one thigh into his chair…
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 the mean time, T has been doing well in terms of adapting to an increased use of his wheelchair. His energy levels are definitely starting to wane more now, whether that is due to his Cardiomyopathy or the Ataxia we don’t know; but any kind of physical activity takes it out of him. He is currently participating in swimming lessons with school, which is having a very mixed outcome. One Friday a few weeks ago, he didn’t even have the strength or energy to dress himself after the swim lesson and instead tottered out to his TA in just his socks to ask for help. Not sure she was quite expecting that to be honest. Not sure the rest of Beverley Baths was either.
We are slowly making adaptations to the house to try to help T remain as independent as possible in his day to day life. The latest addition to our home furnishings, is a delightful toilet frame.
It means that T can stand with a bit more confidence; and hopefully be able to have a bit more ‘winky control’, as I swear that thing has a life of its own. My Mags-In-Law was speaking to him about it the other day…
M: “Do you like the frame T?”
T: “I just feel bad for the toilet, because its been put in jail.”
Honestly, this kid.
We also had a visit this week from T’s amazing OT and her colleague from Social Services to look at further adaptations to the house. At the moment, we all feel T is coping well with the house as it is. We have bathroom aids and the additional rail and gate on the stairs which helps LOADS. Eventually we know that we will have to think about moving T downstairs, however we are definitely NOT at that stage yet. Our long term plan is to *hopefully* convert the garage into a living space for him with a wet room and a sleeping area. Its important to us that our house still feels like a home, not a hospital. Our home is our constant as a family. Our safe place, where we can laugh, cry and love. One of the only things we can actually have control over. I realised this week just how important this is to me, and how ridiculously freaked out I get when things change… J discovered this on Monday when he rearranged some of the kitchen cupboards. I came home from work, went to get a cup out for T and instead pulled out some marrowfat peas. I then proceeded to rain down a serious amount of ‘wife strife’ on him for daring to change something in the house we share, and then grieve for my cupboards of days gone by… not my finest hour I admit.
And what is young T doing, while his mother turns into a lunatic? He’s being awesome. Lovely M the OT discussed some further aids which could be used in school to help T on a day to day basis. As a result, he will be the proud recipient of a WOMBAT.
Alas, tis not the furry kind. If it were, I would have named him Walter. But it is, in fact, a special chair T can use in class to support his muscles and help with his posture…
He was most impressed by the fact that it can shoot up and down via hydraulic power. I mean, whats not to love??
He will also be getting a ‘K-Walker’. Something he was less excited about.
I mean, to be fair, it bares more than a striking resemblance to a zimmer frame. Who wants a zimmer frame age 9?! However, he’s agreed to try it. He just seems to take everything in his stride. Every change, every challenge, every bad day. He just smiles and gets on with it.
He was doing some work with his lovely TA today about wishes and dreams. She asked him what he would wish for if he had 3 wishes…
“Oh I can’t do that Mrs B! I couldn’t wish for more. I’m happy and excited about my life. My life is great already.”
He always sees the sunshine, even on the darkest days.
Now I’m going to leave you with a picture of my dude being a unicorn – a Teejicorn, if you will. I’m off to smile at my new cupboard arrangement and feel grateful for my amazing boy – the strongest, and most positive person I know.
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 the functionality of T’s (big) heart. He took 97 pictures in total to be analysed.
We are still awaiting the full results from this but looking at our most recent letter from a cardiology appointment in September, we are hopeful that everything is still beating as it should be. Hurrah! All he could tell us, is that the Cardiomyopathy is ‘all the way around’. All the way around what exactly, we don’t know. It could be an artery or an elephant for all we are aware. We now need to wait to discover if we will be continuing to see the Cardiology team in Leeds or if it will mean a trip to see the team at Great Ormond Street.
Just before half term, the Mean Machine (T’s wheelchair) became a full time school accessory. I think we were all a bit apprehensive about how this would go. After the first day I asked T how he had found it…
“It was brilliant! It was like having a Lamborghini!”
Well. That’ll teach us to worry won’t it. Not sure you’ll see the Mean Machine on Top Gear any time soon though.
Nicky (T’s Specialist Nurse) also went into T’s school to speak to the children in his class about his Friedreichs Ataxia. Initially, T was unsure whether or not he wanted to be present for this. In the end he decided to stay… and then took over the presentation. Spot the Drama Teachers son eh? What was completely amazing was how happy he was when he came home…
“Nearly everyone in the class asked a question! And then I told them all about my shaking and helped Nicky.”
We are so proud of him and how amazingly he has handled this. He also seemed genuinely relieved that his friends knew. His teacher contacted me to say how wonderful he had been and how confident he was helping Nicky deliver and talk about the condition. J and I also sent a letter home to the parents of the children in the class. We didn’t want the children to go home worried about T or his illness, or with questions that their parents would be unable to answer. It wasn’t anything particularly profound, just a brief explanation of T’s conditions and links to websites which could provide more info, along with an invitation to follow our little blog. The support we have since received from said parents has, quite simply, been overwhelming. Our ‘Circles of Support’ seem to have expanded again. It is truly wonderful to know that there are so many people who care about T and want to help.
Over half term, T went away to a caravan with his Grandparents, Great-Grandma and Baxter the crazy Mexican pug*. He had the best time with them – playing board games, swimming and generally being pawed by a mental dog.
J and I however, went away with some friends to NYC. After what has been a very emotional and challenging year, it was lovely to have some time away just as a couple. We laughed, ate too much food and walked so far that my ankles looked like they belonged on a Rhino and I couldn’t get my shoes off. We definitely needed it though. And our friends got engaged too!
T had, in true T style, sent me to NYC with a mission. He wanted a Halloween costume of epic proportions. Something to go ‘Trick or Treating’ in which would stand out. I can’t say I was overly concerned about said mission. New York is a shopping Mecca! And its in America, where Halloween is effectively on steroids. EASY!
Yep, easy. Well easy if I wanted to dress my 9 year old boy child as a slutty Taco. Remaining options available in the ONLY SHOP we found selling Halloween costumes:
Black Panther (can get this in UK – no epic result here)
Unicorn (slutty unicorn optional)
Minion Goggles (that was it, nothing else – JUST GOGGLES)
Waffle (make of that what you will)
After much deliberation (and a very patient friend – thank you Char), I opted for a Minion goggles and face paint combo, thus creating a ZOMBIE MINION:
Not bad for the limited options available. T managed to walk 3/4 way round our street too before needing to come home to rest. In this short time he accumulated an epic haul of treats, so a success all round I’d say!
T’s mobility is definitely on the decline and we are having to use the Mean Machine much more. Every time we go somewhere new with it, its like seeing the place with fresh eyes. Finding a fireworks display was interesting to say the least. The amount of research we did to find a venue which would be wheelchair accessible was unbelievable! It was worth it though. Also, J wheeled him into a pot-hole on the way to the hospital on Tuesday. I now feel better knowing I am not the only one who does this. I feel we may need to take a driving test.
We also embarked on our first Mean Machine/Dog/solo Parent walking mission. Not gonna lie, we had an unplanned Pug-Husky sledge situation going at one point. However, I managed to get both child and dog home in one piece. And T only nearly rolled away once… so this is an improvement.
I’ve had a few low moments this week, as some of T’s symptoms are progressing a bit faster than we thought (or hoped?). I’m particularly struggling with the fact that there isn’t much anyone can do to stop or slow this down. I find it hard to accept that in this modern day and age, there is ‘nothing’ which can be done. T’s poor consultant got the full brunt of my frustrations surrounding this. I know its not his fault. He just got caught in the emotional firing line. Its a dangerous place to be sometimes. I had a bit of a melt down on a lovely friend, and then felt that I needed to pull myself together, or “stop being a Fanny”, as I so eloquently put it.
“You have one, so you may as well be one.”
Very profound words from said lovely friend. It definitely made me smile if nothing else. So there you go. I’ll leave you with that.
*Baxter was in fact born in Leeds (/ the North Pole), however upon arrival with us I decided that he definitely looks Mexican. And so he is. He is a Mexican Pug from San Juan. The End.
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 has been one hell of a year. On the whole, I’d like to think that as a little unit (T-Unit!), we have dealt with things rather well. We try to stay as positive as we can. We go for days out, we spend Sundays in our PJs watching movies, J and I book trips away together (so we don’t forget about each other, and our relationship, amongst all the craziness), we play endless games of Trivial Pursuit, we kick a football round the garden with our mental ass Mexican pug who thinks he’s Ronaldo, and we laugh. A lot.
“I don’t know how you get up every morning. If it was me, I’d just stay in bed and cry.”
Yep, its definitely been tempting at times. Hiding from the world with a jumbo box of Kleenex and a family sized bar of Galaxy? Sign me up. Only problem is though, what about T? Our amazing little man who has a smile for each and every single day. Would hiding from all of this help him? Not on your nelly. So we plod on. And you know what? Not every day is bad. We don’t walk around 24/7 with a giant black cloud following us and a flashing sign reading ‘ILLNESS IN FAMILY’. That being said, its not always easy to paste on a smile when you feel like things are falling apart – something which a lot of people can relate to, for a lot of different reasons, I’m sure.
It got back to me, not so long ago, that during a particularly challenging few weeks, someone had said:
“Well she obviously isn’t struggling with things that much, she was having a whale of a time at the weekend!”
This was because there had been a picture of me, dare I say it, LAUGHING on social media. Can you believe it?! Someone arrest me, quick. I’ve violated the rules of being sad and going through a bad time. As it turned out though, what said person hadn’t seen, is that I had spent 98% of the weekend in tears.
A very lovely lady who I have recently come into contact with says:
Life goes on, with or without Ataxia.
How right she is. These illnesses effect our life, but they haven’t, and they won’t, become our whole life.
We are also incredibly fortunate to have the most fantastic support network around us. Our family, friends and medical team have been nothing short of amazing. We couldn’t get by without them, of that I am 1000000% sure. They help us to take on each hurdle. They laugh with us through the good times, and are a shoulder to cry on through the bad. They are the Mum and Dad at the end of the phone, or down the street, whenever we need them. They are the best friend, who books a surprise Afternoon Tea and arranges for some of my closest girlfriends to travel from all over the country, just to make me smile. They are the cousins who don’t bat an eyelid because I have freaked out about driving in the wind, and miss an event (in my defence, it was VERY windy) or stage an ‘intervention’ when they know you need one. They are the amazing work colleagues, who give you a hug and make you a cup of tea following a hospital appointment. They are tomato bread and a shared ambition at a favourite restaurant. They are the friends who offer to take on the most RIDICULOUSLY hard challenges to raise money for Ataxia UK; because they love your little man as much as you do, and they want to help. They are the lovely person who sits in the hotel room with you because you can’t face a crowd. They are the followers on Social Media who read about your journey and acknowledge it with a friendly word or a smile. They are the friends who you love with all of your heart. They are the family you adore and wish you could see more of. They are the medical team who see you ‘after hours’ because they care about you. They are the boss who researched your sons condition so that they understand. They are the friend who cries in the street because it is unfair. They are the ones who get you drunk and let you babble. They are the new friends made through a community we didn’t know existed. They are the wolf pack who send inappropriate WhatsApp messages, but always ask how T is. They are the teachers who cuddle your son when he falls at school. They are the ones who don’t know what to say, but we know that you care.
They are the reason we can carry on. And we cannot thank you enough.
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 also been a challenge. I mean, why wouldn’t a 9 year old boy want to swim in arm bands covered in Paw Patrol characters?? Disability swim aids cost A FORTUNE, FYI. Plus, they’re also not the easiest thing to find. J did some serious internet searching this year and earned some serious Daddy Cool points when he found this little treasure…
Swimming safely and shooting webs, whats not to love?! This went down a storm on holiday, I can tell you.
We left Thomas’ last swim school when the class sizes reached ridiculous numbers and T’s 30 minute swimming lesson consisted of 2 attempts at swimming and 25 minutes of sitting on the side of the pool shivering, whilst the other 22,000 children took their turn. Needless to say, T wasn’t in a rush to go back to swimming lessons. And this was before his Friedreichs Ataxia diagnosis.
After his medical conditions came to light, T’s physio suggested swimming as a way of strengthening his muscles. T was NOT IMPRESSED. I got full pet lip and sulk treatment. But, I promised him I would find him new school and hoped this would lead to a more positive experience. After a bit of research, we came across ‘Sportsability Swim School’, a new school in the area, situated only 5 minutes drive from our house. We decided to give them a whirl.
Best decision ever.
T is in a class of 3 with 2 instructors. The lessons also take place in a private pool creating a safe and comfortable environment for the children to learn. Before starting the lessons, I emailed the company to explain about T’s medical conditions and they assured me that they had lots of experience teaching children with a variety of additional needs. At T’s first lesson, the owner of the company made a point of speaking to me and telling me that she had undertaken extensive research of his conditions and had designed a programme to strengthen T’s muscles and build his confidence in the water. After lesson 1, T was buzzing. He absolutely loves it and can’t wait for Saturday mornings to swing round. Over the past few months he has built up great relationships with the instructors and has thoroughly enjoyed his intensive lessons, making steady progress with his technique.
This week, I was a bit worried about how he would get on as he has been struggling a lot with his walking and energy levels. We have made the decision to make his wheelchair a full time accessory at school, a suggestion which T jumped at; highlighting to us just how tough he has been finding things of late. This is not an easy transition to take in for any of us.
Today however, T swam on his own for the first time EVER. 4 lengths on his back and 2 lengths on his front. I don’t think I have ever seen him so chuffed. His smile, was literally ear to ear. I’m not ashamed to say, that I sobbed sat at the side of the pool. The other 2 mothers looked at me like I had completely lost the plot, however I don’t care. My amazing, marvellous and determined little man swam ON HIS OWN without a single aid or woggle. Something we weren’t sure would ever be possible, and a massive achievement for him. His instructors were every bit as overjoyed as I was. T, was mortified that I was blubbing and told me I was “far too emotional”. However, in the changing room afterwards, he told me he was secretly happy I had been crying tears of joy. He is completely wiped out now and I suspect will need to spent the remainder of the day resting to recover, but the smile on his face makes this worthwhile. I told him how very proud of him we are.
“Do you know what? I’m really proud of myself.”
You bloody well should be T. You are awesome.
We might have taken a step back this week, but we have also taken 6 swims forward. And anyway, who needs to walk when you can swim.