Just an update, nothing clever

National Museum of Language

I’ve wanted to write a new post for a while now, but between running 5km every day, work going a bit crazy, Lil Z suddenly having seizures again, Vegemite having a seemingly endless stream of things to attend, and a house guest for the month, I simply haven’t found the time. I’m off to Papua New Guinea (PNG) tomorrow for work, which means another week will go by without writing… So, I’ve decided to give you all a quick update on how things are going here. Hopefully, it will also be helpful to you my readers, since I often forget that many of you aren’t here in Brisbane, getting a blow-by-blow of our life as it develops…

The Challenge

I’m over halfway finished! I’ve been mostly running, with some rowing, walking and Hayley (personal training) sessions thrown in to keep it interesting. I definitely feel like I’m getting better strength and endurance and I can now do a 5km run without even thinking about it.

Going for a run along the river - and having lunch at the same time!

Going for a run along the river – and having lunch at the same time!

Even more exciting have been the people who are supporting me. My mom and Anne, a friend from high school, have gone above and beyond by volunteering to do the WHOLE 50 DAYS with me! And Team HPPT (the running group my personal trainer organised) have raised money for me AND got me out running on Saturday mornings at beautiful Kangaroo Point. Not to mention all the super generous people who have sponsored me. It’s great to feel that I’m not alone in this!

The Challenge with the Challenge

Unfortunately, I’ve found out at short notice that I’ll need to spend 5 days in Papua New Guinea for work. Two of those days, I’ll be in a hotel in Port Moresby,  that has a gym, so I’ll be able to keep up my challenge. One of those days, I’ll be landing back in Brisbane by early evening, so again, I can stick to my challenge. But two days, I’ll be at a remote site essentially in the jungle, and when I’m not working at the client’s office, I’ll be confined to quarters for my own security. Not good.

I’ve given it a lot of thought, but there is no way that I’m going to be able to do 5km on those days. So, I’m going to have to break one of my rules and do 10km on two days to make up for the two days I’ve missed. I considered extending the challenge by 2 days, but at the moment my last 5km is the day before my birthday, which is good. I like the thought that on my birthday I can put up my feet and have a gin and tonic instead of running. So, 10km for 2 days it will be. Sorry for having to break my own rules, but you can blame the client who decided they wanted me there ASAP…

Lil Z – Medical

Enough about me – on to the star of the show… Lil Z has been suffering a few setbacks lately. For the past 3+ weeks, she has suffered from new types of seizure. They are tonic and spasm seizures, but they only last from 20 seconds to a minute. Sometimes she screams and cries afterwards, but often she snaps out of it and goes on with whatever she’s been doing, seemingly unaffected. These almost always seem to occur in the morning (helpfully, right around the time I’m doing the school run) and it can be a single seizure or a cluster of them.

We’ve been to see the Neuro who increased her three existing meds (Trileptal, Epilim and Keppra) and also gave her Clobazam to take at bedtime to try to stop the morning seizure clusters. The adjustments seemed to work for a few days.

Then Lil Z caught a tummy bug. She couldn’t keep anything down – vomiting it all back up. And in between vomiting, she had seizures. Her eyes rolled up into her head and she went rigid. She finally managed to keep some rehydration fluids down at 9pm in the evening and the seizures stopped. But now it seems to have gone back to the way it was before, with a seizure most mornings. She’s also been unusually quiet and tired – sleeping most of the afternoon.

I’m worried that the extra sleep may be the result of the increase in meds, although none have been raised by much. Last year at this time it was the switch to Trileptal which caused extreme drowsiness and either caused or coincided with her feeding problems.

Snoozing in the egg chair on the verandah

Snoozing in the egg chair on the verandah

I also worry about the new, quick seizures. I’m sure we miss lots of them. And sometimes, especially with Lil Z being so tired, it is hard to tell what is a seizure and what is simply sleepy or spaced out behaviour.

Lil Z – Other

Seizures aside, Lil Z is doing really well. She is using the sign for “more” regularly and “up” when she feels like it. We’re now working on”finished”,  “bounce” and waving “goodbye”. She also chats a lot more than she used to, and increasingly it seems to be directed at people or objects, rather than just to herself (although she still has lengthy conversations with herself during nap time).

Behaviourally, she has come so far in the past 8 months that it is just astonishing. She no longer dissolves into screaming and crying at each therapy session – in fact, she very occasionally smiles now. That’s not to say she doesn’t still let everyone know how much she objects to being forced to do her exercises – but I don’t think that will ever change. Therapy puts her outside her comfort zone and makes her try new things – not something she enjoys.

The same goes for playgroup. She can be grumpy and she often falls asleep, but she is no longer the screaming, ear-scratching little girl she once was. She even sat in a circle with the other kids and listened to a story last week (although she fell asleep before the end).

She is also doing well on eye contact – although it’s always on her terms and never for very long. But she does look at people more regularly now.

Best of all, she is getting ever closer to giving hugs and holding my hand. She now touches (a few) people voluntarily and will lay her hand flat on your hand or arm, which is a lovely sign of trust and affection. We also had an excellent cuddle session the other day, where she snuggled with me as much as I did with her.

Stuff on the horizon

We’re never without something to think and worry about around here. Without wishing to pre-empt any future posts, here’s a quick summary of some of the issues rattling around in my mind:

  • Special needs pushchair – Lil Z has officially outgrown her Mountain Buggy. We’re going to be working with her physio to find an appropriate special needs pushchair for her.
  • Schools – A recent visit to a rather amazing school for the visually impaired and a discussion with the head of the school Vegemite will be attending next year has got me thinking about where Lil Z should go to school, and what approach we should be taking to her education.
  • Assistance dog – I’ve been doing research and formulating a plan. Only problem is that we probably won’t be in a position to get a puppy until we buy a house (rental houses and puppies not always being a good combination). It’s only a problem because if it were up to me, we’d get one NOW.
  • Hydrotherapy – We have the funding for it, now we just need to find a place to do it. We’ve been swimming at Red Hill Special School every few weeks and she still loves it. I’m also keen to get her started on horse riding sessions, but I suspect she’s still too young for that, although her love of bouncing and rocking means she will probably love riding a horse.
  •  Housing – We’ll be looking for a new rental house soon, and hopefully be in the market to buy a house in the next year. And this means not only all the usual house-hunting and moving stress, but also trying to find somewhere that will meet Lil Z’s needs too.
  • Fashion – I’ve found some fantastic things for Lil Z online that hopefully I’ll be sharing with you later…

 

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