Hospital Birthday

Two years ago Matilda was as sick as a dog on the morning of her birthday. I remember her dad (Marty) saying he wished we could rewrap her presents up and give them to her again as she barely seemed to be there. Two days later we knew she had HSV encephalitis and our world changed forever.

Once again we have celebrated Matilda’s birthday in hospital….same hospital but a different type of life-threatening encephalitis (medical update below). So how do you  make a joyous occasion out of all this muck? How do you give her and us happy memories of turing eleven? Well heres what we did….

 

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Face-time with the lovely Cinnamon who couldn’t be with us.

Our plan was to keep it short but happy.  The past two years have really taught us to ask for help from our lovely friends and community. Despite the fact that it meant a day off school and a more than a two-hour-each-way drive, two of Matilda’s BFF ( shout out to Sia and Grace!) and parents joined us for a party. Marty was with her at the hospital, so Reuben and I spent the night in Brisbane so that we could be there at the crack of dawn…well 7 a.m!

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BFF’s in da house …..well ward actually.

After a serious amount of present opening the girls went of to The Starlight room (activity centre for games, face painting, craft & general fun for hospital kids and their visitors) whilst we decorated and generally took over the lush rooftop garden.

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Decorating pillow cases…sign your name across my heart!

My wonderfully crafty friend Jane had helped me purchase all of the required fabric crayons for decorating pillow cases and had even gone the full nine-yards by making jersey beanies on to which the kids attached giant pom-poms they made.

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Byron Bay Beanie Babes & Bro!

Passers by commented on our healthy party food (Dah, we come from Byron Bay man!) but maybe they hadn’t seen the raspberry cake surrounded by chocolate eclairs!

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Yum! Matilda almost ate the wrapper!

I started to shed a tear when the hospital foundation volunteers arrived with a pressie for Matilda. Those compassionate & generous souls in green aprons/shirts have made so many dark days better during our long hospital stays.

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Could she get any more pressies?
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Picnic and more unwrapping!

Finally it was time to pack up our party. To leave our lovely Matilda to chill out and let her brain have some recovery time.

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One last goofy photo!

As a family we can only pour out our immense thanks and gratitude to everyone who has helped us over the past weeks and especially yesterday to make Matilda’s birthday an event that she will recall with fondness and happy memories.

Medical Update:

Well, even our good days can be murked up by yucky stuff. Matilda had 5 seizures yesterday, the last of which was a fair doozy. Anti NMDA encephalitis is a horrible disease and its scares me when I read some of the awful consequences on the website to support families.

Matilda is 3/4 of the way through her first set of treatment with Rituximab (an IV infusion) and also monthly steroids/immunoglobulin treatment. Her severe behavioural changes have dampened down,  although they still flare up suddenly. Her seizures appeared to have been controlled but seem to be on the increase again despite being on 5 different anti-seizure meds. We love the team at the hospital and their care but this is very frightening stuff. She may come home after her last infusion next week but it depends on a whole heaps of factors.

Matilda has started doing more and even venturing a little out of the hospital. This disease will be with her and us for a very long time. Throughout the rest of her life she will be at higher risk of neurological conditions and relapse. And thats if we are

Last night I bawled my eyes out and for the first time asked ‘Why my beautiful girl?’. It is a silly question. This is not a targeted attack but an unlucky coincidence. I was sad that my family were separated, because Matilda & Reuben have had to be braver than I would ever wish them to be and because I am terrified about our future. But as her lovely friend Grace wrote in her card…Matilda has a lot of GRIT and so help me if she can have it, so can I. XXX

GRIT ON YA’LL

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A year and a half on…

Whoa its hard to believe that it has been five whole months since my last post! Just getting on with LIFE took everything thang we had and there was nothing spare to document and share our experiences. But I am ‘back in the saddle’ so to speak. I love the wonderful interaction I have with people regarding the blog, whether its right here in town as I apply sunblock to the kids at the local pool or from far, far away. I’m keen as mustard to start posting about a whole range of stuff we are going to try this year but first lets have a wee look back at where we have come from.

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June 2015 Matilda in intensive care and hardly responsive.
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Matilda circa 2016! Rockin pink hair ends!

A year ago I started to write a post that I never completed. It was to be called ‘Meanies everywhere.’ which was a phrase Matilda used one night when frustration overwhelmed her and reading it now I can feel the pain of those days. It went like this:

You know I planned this as a blog about treatment and rehab. But as time goes on learning words seems far less imperative to learning LIFE. Matilda rails against having to practice the skills she once knew and this week has tearfully explained that her friends don’t want to play with her at school. She says she asks them to play with her but they say they are playing with someone else and she can’t play too. This is so common at school where alliances form and change on a daily basis but for Matilda it says one thing. There are ‘meanies everywhere’. Mum and dad are forcing me to do all this horrible work and now my friends don’t want to play with me. As she scratches at my face, rips up her homework book, pulls at her own hair and says that she wishes she was dead, I keep insisting that we move forward, finish the work and hold her tight in a sweaty hug. I feel like a meanie. I also truly believe in my heart that if I don’t help her to recover the best I can, if I take the easy complacent route, that I will be a meanie too. As with her friends who need time away from her strange social skills and are not mean, I am not mean either but bloody hell I feel it!-

Reading that a year after I had written it wrenched at my heart but also made me realise just how far we have come. It must have been a bad day as her friends have been great! Yesterday Reuben started high school and Matilda started with a new teacher and class aide. Everything was a little topsy turvy with a couple of our standard glitches but pretty much all family members had a likeable, interesting day and there was no mention of ‘meanies’ lurking. The kids both exuded an overwhelming sense that despite the hot, sweaty  weather…..everything was COOL!

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2016 ended with a bang. Matilda won a Shining Star award at her dance performance and Reuben was ‘dux’ of Year 6 after a really weird year – proud parents!

The crazy thing is that this is not because of some ‘magic pill’ that has ‘fixed’ our lovely Matilda or that she doesn’t still struggle on daily basis with what she has lost and dealing with the consequences of her acquired brain injury. It is simply that we, as a family, now operate like a well orchestrated machine (most of the time). We work together to lessen the chances of blowout and when they do sneak up on us, we all act to neutralise any negative feelings as quickly as possible.

This high level of awareness or ‘being on call’ in your own home/life all the time can and does take it’s toll at times. The restrictions of what we can and can’t do in a day, where we can for holidays (Is there 24 hr emergency department near by? How long is the drive? Is there a quiet space for day sleeps? ) and feeling very timetabled (medication and meals at set times, has enough water been drunk, is there the right kind of food in the house and watching her 100% when swimming because of seizures etc) can really grind you down even though they are the very things that enable Matilda to function as well as she does, to be as MATILDA as she can be.

We have also learnt the power of accepting help from our wonderful friends, family and community. Just one example is a wonderful friend who enabled us to have less anxious nights by having a device fitted under Matilda’s mattress that sets off an alarm if she has a seizure.  Without it we would have spent half of our nights sleeping on her floor with one eye open. The respite that this has given us has been immeasurable! We may soon be able to move onto a similar device that she wears on her wrist that we are experimenting with at the moment. Such generosity and thoughtfulness has repeatedly stopped our ‘titanic’ from sinking.

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Mostly we’re working on not sinking but have the occaisional “flying” moment like Jack & Rose (Titanic 1997).

So here’s a snap short of our  ‘HAPPY BRAIN – HAPPY HOME MANTRA’

  • water  – a least 1 1/2 litres over the day – little bits all day.
  • protein – at every meal and snack times (argh that can be a killer to work out).
  • exercise – a daily dose and even better if it challenges balance or dual tasking.
  • sleep – regular, good quality, lots of it and not when overtired or at wits end.
  • seizure monitors – oh that peace of mind for parents!
  • get outta here – have breaks away from home/change of scene.
  • socialising – trying to sustain everyone’s friendships…even if only tiny doses.
  • fun – replacing memories of hospital and loses with good times.
  • therapy – keep going back there, teaching to mastery, reteach when forgotten.
  • technology – looking at software/apps that may help with memory/literacy/typing
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Powerpoint for talking with Matilda’s class about her Encephalitis and seizures. Its a little emotionally exhausting for both of us but SO WORTH IT!

And my final mantra item is HONESTY. We try to call a spade a spade – with Matilda, with each other and the world. We talk openly with her about having ‘a big scar’ on her brain and don’t make promises like ‘everything is gonna come back if you work hard’ that may not be true. I tell my friends when I feeling ground down or like I want to run away from home. Reuben tells us when he has had a gut full too. If all else fails there is always yoga, kite boarding or singing the songs from Matilda the Musical at top volume in the car!

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“Never again, will I doubt it when my mummy says I’m a miracle” – Revolting Children

So bring on 2017. I’m really looking forward to sharing whatever mischief we get up to!

 

 

 

When therapy can’t be done!

Therapy! Whats that?  Sometimes we’re scooping up every last crumb of  energy to just get through the day. Our last month or so has really shown me a lot about what to do when therapy goes to hell in a handbag – other titles may be ‘Riding on the seat of your pants!’ or ‘Anything Is Better Than Nothing.’ or ‘Dammit,  Lets Go For A Run!’

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When the going gets tough daily ‘action sessions’ take priority over therapy!

In retrospect we left the hospital thinking that ‘the only way was up’. That if we just put in the right amount and type of effort, that we would be able to make slow but steady gains. There is much truth in this assumption but what we hadn’t quite expected was for some things to go completely pear shaped! Our neurologist’s euphemism for this is that stuff ‘evolves’ after this type of Encephalitis.

Over the past months Matilda’s seizures (previous post link here) progressed from simple focal or absence (Petit Mal) to the full-blown shakey kind that most folk imagine and call ‘a fit’ (Tonic-Clonic/Grand Mal). Even her paediatrician admits these can be bloody scarey  when you have no experience of them. The week of the first big seizure resulted in extreme fatigue and confusion for all of us. Then the poor little taker got the ‘wipe you out cough/temperature’ bug that had been going through our community. There were 14 kids away in her class the first day she had off sick! This delightful week of attempts to get temperatures down whilst being freaked out that they would throw her into a seizure was followed by our worst week of behaviour to date. We all know that even when our kids are babies, that their rhythms all go out of whack after being sick. Well, our ‘recovery’ week was a doozey (think about your average tantrum and times that by 17 million…O.K thats an exaggeration but you get the idea!)

Therapy was off the agenda. Anything that even remotely whiffed of a structured task led to screaming, biting, running away and general mayhem. And look I have to admit that as a speechie, it feels heartbreaking to not be able to work out how to reinvent a task to an ‘acceptable’ format for her when the storms are raging. It makes me feel like a failure but this gives me great insight into how many of the parents I work with feel, when the demands my profession place on them are simple not ‘doable’ at that time, in their home.

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Even a messy house can be converted into a mini roller-skating rink!

Luckily brain science and recent research has given us lots of ideas and backed up a lot of what our instincts (especially Dad’s who doesn’t have professional blinkers) about what to do so that we still feel like we are nourishing and nurturing her repairing brain, even when planned rehab/therapy is off the agenda.

COMPASSIONIF IT IS TOUGH FOR YOU, IT WILL ALMOST CERTAINLY BE TOUGHER FOR THEM.

  • It is so easy for everything to spiral out of control. Too many words and angry responses fuel more difficult behaviours.
  • We talk about the ‘crankies’ in Matilda’s brain having a rant but it is not Matilda. At least for us separating who she is, from what is beyond her control seems to help.
  • Let it go! This is hard but not impossible. We can have been defending ourselves from a range of flying missiles or be heart-sore from having a favourite object broken but within minutes that tidal wave passes and we try to continue as though it hadn’t happened. No blame, no shame, no hashing over, no analysis of what cannot be explained!
  • Grab hold of the good times with gusto. Family runs on the beach, cuddles reading books in bed, hunting Pokemon or building a treehouse. We all have our different ways to connect and share love. Don’t get me wrong. I stress. I panic. I have sleepless nights. I cry. But I try, try, try to focus on the sweet times.

EXERCISEGET THAT HEART RACING. 

  • Its simple. Just get out and move. Jiggle, swing, swim, jump – anything at all.
  • There is a lot of really good research that shows how exercise helps brain function and neuro-plasticity.
  • Initially Matilda had no stamina but we are slowly building up weeny levels of endurance.

EAT & SLEEP WELLNO BRAIN WILL HEAL WITHOUT  REST AND HEAPDS OF IT.

  • Watch for tired signs and act on them. Retreat home, send kids packing, reduce talking or cognitive load, avoid multitasking (huh!) and so on.
  • We avoid carbohydrates and sugar. If Matilda had a breakfast of just a croissant with jam, we would see a total break down 1 1/2 hours later.
  • Lots of protein – this can be really tricky but we keep on trying.
  • Lots of Vitamin C rich fruits and lots of veggies…even if the range is minimal.
  • Anything with lots of  HIDDEN veggies. I grate carrots, courgettes and pumpkin into my spaghetti  sauce  – Jamie Oliver’s version link here. and mash in veggies to thicken stews.

WATER DRINK LOTS OF IT.

  • This requires constantly carrying drink bottle and checking her intake. If we don’t check, we find she has only drunk about 500ml in a day from lots of sips but not big gulps!
  • An adult friend with a grain injury commented that his symptoms are much worse if he doesn’t drink enough.

STAY SOCIAL FEELING LOVED AND CONNECTED HELPS KIDS MAINTAIN RESILIENCE.

  • We have ask our friends for short play dates, early dinners and quick little adventures. It takes a bit of courage to stand out as being different in this way (most of her friends play longer, harder & faster) but if we pushed Matilda to stay up later or play longer, she would be unable to cope. Th consequences would knock-on like a falling line of dominos.
  • Play and laughter with friends overrides so many of the other yucky things and not just for her!

RELAXATION AND MINDFULNESS – LOTS OF RESEARCH BUT REALLY HARD TO DO!

  • Much as I would love to say we do relaxation, yoga or mindfulness with the kids, the truth is our attempts are sporadic and often a failure.
  • Matilda will do some kids yoga videos alone.
  • Our best attempts at deep breathing coincided with hips lifts against a wall….breath out on the way up and breath in on the way down…slowly.
  • The research in this area is strong. It really does help but for us at least it tricky to get happening in any sustainable way, despite some grate books and CDs 9Such as Sitting Still Like A Frog – link here)
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Relaxation and mindfulness for kids and adults!

So much to do that helps when all the ‘other stuff’ just can’t get done. My only other HOT TIP is that the parents should do the same. For me yoga is almost nothing about what my body looks like and soooooo much about what my head feels like. In hospital Matilda once said  ‘Yoga means a good day!’. She nailed it. I just have to creep out of bed in the dark to do it!

Seizures

Seizures make me cry. Since early May Matilda has developed seizures. In the scheme of things ‘seizure-ish’, Matilda’s would currently be considered very mild. Many families are dealing with way more than we are . But despite my best efforts to convince myself otherwise, seizures change everything – subtle shifts through to absolute fault lines.

 

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Luckily she has learnt how to swallow tablets & capsules!

Seizures mean that the small amount of freedom Matilda had won back over the past year has been eroded. We hang closer to her as she is less stable on her feet and ‘shadow’ her when she is with her friends in case she has a seizure.

Seizures mean that we have to fill our little girl with medication, that has three pages of side effects I wouldn’t wish on my worst enemy. Most of the time we don’t know what is impacting on things like her speech – is it the seizures, the medication, fatigue? And you know what, neither do the doctors.

Seizures mean that at times she is so tired she can hardly function and our plans for slightly longer times at school may hit rocky ground (or at least how she is at home afterwards). Pushing dinner times out a little later or socialising with friends in the evening is becoming harder not easier (on the bad days).

Seizures mean that normal 10 year old girl activities need to be strategically managed – sleep overs, play dates and parties. Shorter, with mum doing the emergency medication talk or hovering in the background, leaving before all the others, only with one friend – never quite free.

Seizures mean lots more doctors appointments and not necessarily more solutions. We try to arrange ways that Matilda doesn’t hear the chat or discussion over outcomes/side effects/recent deterioration but there are times that this is hard to avoid.

Seizures mean  that Matilda has mentioned hating her body or being broken more often. She is tough and this only happens when she is at her absolute low-battery setting but on top of normal early-puberty issues, it strangles my heart.

Seizures mean that her 12 year old brother Reuben knows all about what to do in an emergency situation and that we have a sign on the fridge for what to say when you call for an ambulance.

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Getting ready for a recent EEG

Seizures mean that we check how far it is to the nearest hospital and if they have a 24 emergency department before we go away. Our car recovery policy will get upgraded too in the event of a breakdown!

Seizures mean more talks with the teachers at her school and kids in her class. They have all proven that the more they know, the more supportive that can be.

Seizures mean that I have no way to forget the horrible night when she was first ill and a seizure almost took her. I think often, almost daily of the doctor at her head, keeping her airways open, telling me to keep talking to her, that she could hear me, as she shook on the bed. My tendency to overprotect her has gone through the roof and I am constantly fighting my inner urge to check on her, hold her hand, not let her go too far…….

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Mum stands by trying to act cool but freaking out!

 BUT seizures mean we are still here. We are still in the game and prepared to do what ever it takes. This may be a temporary reality or for the rest of our lives. There are chances that it could become significantly worse or possibly better. Either way as a family and as a community we will roll with it, breath into it. Sadness and despair tap on my door. My yoga teacher read a beautiful quote from the poet/writer David Whyte from Consolations (link here)

Despair turns to depression and abstraction when we try to make it stay beyond its appointed season and start to shape our identity around its frozen disappointments. But despair can only stay beyond its appointed time through the forced artificiality of created distance, by abstracting ourselves from bodily feeling, by trapping ourselves in the disappointed mind, by convincing ourselves that the seasons have stopped and can never turn again, and perhaps, most simply and importantly, by refusing to let the body breathe by its self, fully and deeply. Despair is kept alive by freezing our sense of time and the rhythms of time; when we no longer feel imprisoned by time, and when the season is allowed to turn, despair cannot survive.

Breath, hope, step forward.