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!

 

 

 

Medicine -A spoonful of sugar?

I know this may sound very naive but I didn’t really think about what the medications Matilda is taking may actually be ‘doing’ to her until this weekend. I am full of respect for the hospital team that have been working with her and switched off a bit. Maybe it was just too much information to soak up. Maybe it was a numbers thing. We had reduced the dose and number of her medications quite a  bit as we transitioned home from the hospital. So less equals ‘good’ or at least ‘everything’s oki doki’, right?  The words ‘side effects’ however are now ringing in my ears and I have slightly weakened friendship with her meds!

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Medicine paraphernalia in our hospital transition phase.

Matilda is on an anti-seizure medication and a B6 supplement to mitigate the effects of the ‘side effects’ of the anti-seizure medication. As well as Melatonin to help with sleep.

Lesson #1    Repeatedly check that you are giving the right meds at the right dose.

One day I went to the chemist and bought the B6 supplement at a lower dose. I thought I had doubled it to match what we usually gave her. I also naively underestimated the impact this supplement had, thinking ‘Ah its just a vitamin.’ WRONG!  We had about four weeks of daily meltdowns before I checked her dosage sheet and realised we were 50% down on her dose. Taking this back up coincided with a return to a less roller coaster life. I had made two mistakes here – one was not really understanding what the B6 was for and the other was thinking that I could hold all this information in my head without checking.

Lesson #2   Know the side effects of the medicine and monitor them.

I am now wondering if much of what I have felt was due to Matilda’s ‘acquired brain injury’ is in fact due to the side effects of her anti-seizure medication. She has a very high chance of having seizures if she is not on the medication but it comes a huge cost. The rages, otherwise know as ‘brain fireworks’ are scary and emotionally shake us all down. When I stuffed up her B6 we felt their full weight. Part of me feels as though I am poisoning her to keep her safe – not a great feeling as a parent.

Lesson #3 Really listen to your kids when they talk about changes to their bodies.

Matilda has real problems explaining pain. Is it pain, tingles, cramps? She will do things like scrunch up her hands because she can’t explain exactly what it feels like. A few weeks ago she started complaining of pain in her hands and feet. And after we increased her dose of B6 after a recent hospital review, she continued to complain but also said her eyes hurt. At this point I hit the internet and this set in chain a process of reviewing what she is taking, blood levels, possible toxicity etc.

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Constant monitoring feels a little like being Sherlock Holmes.

They say it takes a village to raise a kid. I feel like it takes a big team of people and a gazllion trillion neurones to look after Matilda. There is no sitting back and letting it all happen. It’s all about the little details.

Whilst relying our medical team and their advice, we have also begun they journey of pondering alternative or complementary therapies. But thats a whole other post folks.

Remember to keep your eye on the ball ya’ll!

 

 

 

“Are we there yet?”

1044 Km in one day – now that’s a road trip. Last April Marty, Reuben and Matilda managed to drive from Canberra to Byron Bay in one day. We were going to cover a similar distance in order to arrive at our Christmas holiday destination but this time everything was different. Matilda’s ability to cope with change and fatigue has significantly altered this year. We marshalled our best planning skills and decided to tackle the journey over several days. Within half an hour of leaving our house we heard our first “Are we there yet?” – there were many, many more to come. This is what we learnt about long distance car travel and camping after HSV encephalitis.

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All prepared for our long, long road trip!
  • Take heaps more time. Matilda can cope quite well with about two hours in the van if everything is well planned. We can even stretch it out to two and half hours but by the time you are heading to three hours no amount of DVD’s or playing ‘Spotto’ (spotting yellow vehicles) will halt ‘meltdown mode’.
  • Sensory issues. Our van is well past its prime but we do have a camping fridge. Being able to provide cold drinks and keep the sun off her with curtains helped. Right at the end of our journey we had to bump over a dirt road. Matilda complained about the noise and I was really grateful for good quality over-ear headphones that could reduce it as she listened to music. She prefers adult ones, complaining that children’s sizes are too tight.
  • Food. We needed to plan well so that we had good quality food to eat and the fridge really helped. Chicken and grated carrot sandwiches. Chopped up pineapple and rockmelon. In the old days we would have consumed a fare quantity of chips and jelly snakes. Not only doesn’t she like them anymore (finding snack foods is tricky) but too much carbs and sugar just lead to a nightmare….they seem to hasten the ‘meltdown mode’.
  • ‘I need a wee.’ We could ignore this a little but we did have to stop far more often than we would have done in the previous years (and that was just me!)
  • Avoid the ‘Disaster Combo’. On the way back we missed the spot we had planned to take a break. We pushed on past our usual two and a half hour limit as it was raining and we were trying to find a sheltered road stop. Matilda needed a WEE and was BORED and was HUNGRY. Kaboom! We had pushed her a little too far and she became absolutely distraught. We all ended up in tears or close too it. We learnt the hard way that we should have backtracked as soon as we realised our stop was missed.
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A room with a view…before our neighbours arrived.

Our Christmas involved camping at a family farm with about 30 of our relatives.  There was hardly any electricity so no screens or phone charging, no internet/phone signal and no indoor plumbing available to guests!  Yep, it was pretty rustic but absolutely wonderful. With folks of all ages from under a year to over sixty it wasn’t a Christmas that you could describe as ‘unexciting’ or ‘quiet’ (most of the time).

Matilda coped really well, trudging down to the pit toilet, dodging flies and ferocious ants, and bathing (a swim) in the dam.  Temperatures were hot one minute and chilly the next. Marty and I had planned to bail the minute she showed us that she couldn’t cope but with a little help, she was an absolute Trojan.

  • Sleep. The importance of sleep can just not be over stated. We tried as hard as we could to keep her sleep cycles quite close to the way they are at home. Frankly she was stuffed most of the time and generally went to bed before all of her younger cousins. She continued to have ‘quiet, non-talking time’ in the middle of the day (no matter what everyone else was up to).
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I think I really need to sleep….NOW!
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Is it morning?
  • Linking to home/normality. Matilda had a C.D player and she listened to story C.D’s a lot of the time when she wanted ‘out’ from the noise, at sleep times and to create an ‘sound environment’ that linked her to home. Favourites are by Roald Dahl-all of them,  Enid Blyton-The Faraway Tree and Louisa May Alcott-Little Women. We use a C.D player instead of an MP3/Ipod because at that time she couldn’t read  much and  C.D’s were easier to navigate which meant indepenendence.
  • Support. Our fellow campers (Marty’s family) all knew what was going on for Matilda and were wonderfully supportive. Even Santa helped out by arriving earlier than usual on Christmas Eve. Based on her cartwheeling and ‘yoga-tree-pose’ jumping off the dam jetty (with life-jacket on!), it may have been confusing for some as to what her actual difficulties are. One person commented that it was only when she spent some time alone with Matilda that she realised how she had changed.

So really why not just stay at home. We did have meltdowns and a few bungles. It really did require more thoughtful planning and making strategic decisions, than any travels in recent years. Well you know, I tend towards being an over-protective mum, which has become a great deal stronger after our Encephalitis experience but I WOULD DO IT ALL AGAIN TOMORROW. 

You can only really fly when you get out of your cage. Matilda and maybe all of our family came back more resilient. We came back with a little bit more elasticity in our whole system. Like a good sourdough, we have risen to the occasion! We were a little flattened and lacking in airiness, and now we have a bit more bounce.

We did not celebrate New Years Eve in 2015 as it did not feel celebration worthy but I’m pretty certain that we are gonna party big time by the end of 2016!

Looking forward to a great year ya’ll

Fatigue, food and fads.

I know that it seems crazy to lump these things all together but they appear to be intimately connected in Matilda’s world. When the kids were babies we would occasionally smugly congratulate ourselves that we had for example mastered ‘sleep routines’ only to be proven wrong the next day! Learning about what helps Matilda to stay happy and function smoothly is a little the same.

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The knitting fad

Fatigue – Cognitive fatigue is so much more than ‘being tired’

Without a doubt one of the biggest issues we are dealing with for Matilda is fatigue. She needs frequent breaks throughout the day for ‘no talking time’ rest and good doses of exercise between her two hours of school, therapy sessions and home practice. Communication and learning new language wipes her out. It is almost as if you can see dark rings forming under her eyes the longer she continues in a ‘chatty environment’ or language session. Suddenly her eyes start blinking, her mouth becomes full of ‘cotton wool’ with her words and sounds being jumbled. If we are at home she will ask to ‘watch’ (kids TV) or if out and about she will repeat her desire to leave like a cracked record. Distraction works for a short time but soon she will implode, crawling into a ball, crying and unable to communicate – a place that is distressing to all of us and we work very hard to avoid.

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Playing Piggy-in-the-middle for an exercise session.

Structure to our day and knowledge of tired signs seem to be our best allies. We watch closely for signs that she is finding situations tiring and head for the hills. I remember once thinking I was going to need to leave a café before the food came. We go to quieter places, stay shorter times, don’t try to do so many jobs in one trip to town and go home when she asks to leave. Dinner is almost always on the table by 6 and bed at 7 p.m. As summer rolls in and the nights are lighter with her friends still playing out in the street, this is becoming increasingly tricky but there is no choice and for now we follow her lead.

Food – Oh me oh my!

Marty and I to a large extent were bought up in a ‘you eat what your given’ type world. We have always tried to accommodate our kid’s preferences but are pretty strict about healthy eating. Matilda’s food fads currently last for a while and then she will no longer eat the item…pears, grated beetroot, cake, chocolate, most biscuits…to name a few, have all come and gone never to be consumed again! The refrain ‘I don’t eat that anymore’ still startles me but no amount of coercion or discipline seems to alter this internal programming!

Last week we had a few really explosive and distressing evenings and it took us a few days to work out that she was HUNGRY. She was complaining of feeling sick and having a sore tummy. So now we are strict…a protein based afternoon tea is a must….peanut butter toast, sausage sandwich, sushi. We have even bought a protein powder to add to fruit smoothies as a back up. It seems to work.

Regular food and water. Basic chemistry at work but we cannot rely on her to understand what her body needs…yet.

Fad and favourites

Matilda often asks “Do I like that?” or other versions such as “Do you put red sauce (tomato) on this?” It seems that she has ‘forgotten’ a great deal about her former preferences and her ‘rules’ for how things went together especially with food.

It probably shouldn’t but it cracks me up. Knowing full well that she may have loathed something before, I will neutrally remark, “I don’t know, why don’t you try it?” This has led to some wonderful new experiences such as trying sardines mixed with parsley, mint and lemon juice, from which she would have previously run a mile but on the weekend she decided she loved! Go figure.

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Prior to “I don’t eat cake.”

Toys, clothes, shows, games…all go in favour and then are right royally dumped. Sometimes this is because they prove too tricky for her current skills but other times there appears to be no reason for the ‘break up’. Maybe part of her frenetic moving from one thing to another. Sorry mate, you’re dropped!

Our patience is often tested. We end up with lots of half completed craft and a fridge full of beetroot but we go with the flow because frankly there is no alternative.