I don’t know what else to say.

I just got a call from the head metabolic physician, Dr. Boneh, from the Royal Children’s Hospital in Melbourne. He had just received a fax from the US with the results of Alyssa’s DNA tests and she is clear of GSD, Glycogen Storage Disease. Wow!
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Brmmm Brmmm …

It’s our lovely Liam’s birthday tomorrow and I’m about to attempt some cake decorating … going good so far.

I did consider leaving it like this – it at least looks like a 3 and Tristan, Liam and Alyssa (just a nibble) and oh alright, me, seem to think it tasted alright …

It took quite a while but I did finally complete something resembling the image in my head!


Apart from spastic butter icing which just didn’t mix properly (nothing some yummy biscuits can’t hide) I’m actually pretty proud of myself. It’s not exactly my Mum’s standard and I’d hardly win any awards for it, but I’m sure Liam will appreciate it, you can at least tell what it’s meant to be and it’ll be half eaten by tomorrow night anyway.

After all, the last time I tried cake decorating was Tristan’s 5th birthday when I made a green party hat – sounds easy you might say – well all the kids asked why I’d made a christmas tree for his birthday 😦 I hope this goes some way to earning back some ‘Mum’ points!

We shall see what Liam has to say tomorrow morning …

On The Move!

Sorry it’s been so long since updating but starting back at work in a new school has taken quite a bit of energy and time from me, as well as slightly increasing my hours.

Alyssa has been plodding along quite well though – except for the fact that her and her little older brother are both ‘snotty faces’ at the moment and neither are sleeping well.

Exciting news worth mentioning however is the development of gross motor control in the form of some style of crawling 😀

Yes, Alyssa is day by day discovering there are ways to make her body move that enable her to get from where you leave her to where she’s not meant to be in before you’ve noticed. She’s mostly been rolling to achieve this with lots of practise up on hands and knees and rocking back and forth. This weekend has seen a realisation that moving arms and legs at the same time results in a type of commando crawling in a straight forwardly direction. It’s still slow going but she’s getting the hang of it very quickly. She’s even been relying heavily on her ‘operated on’ arm to properl her along.

She turned 8 months a week ago and is babbling away with lots of Dad, Dad, Dad, Dad and Bub, Bub, Bub, Bub with the occasional MMMummmm – when she wants to be fed or wants a cuddle usually. She’s standing really well, only needing a slight hand hold to balance herself and has had a few recent attempts at moving her feet in a walking-type movement. I reckon she’ll be cruising around the couch in a matter of weeks.

I shall update some photos soon! I haven’t taken many with the work efforts recently so I’ll have to get onto that. A job for the new iPhones Warren and I have recently procured perhaps?!

Happy Birthday Haircut

I went to the hairdressers to get my hair dyed and  a bit of a trim and I came out with hair up to my chin. Argh! After a night opf panic I’d made a bad decision I went back today to get it fixed up a bit and I’m happy enough now. I’ve been trying to upload a photo all over the place and nowhere is working so I thought I’d try here.

The Modern Era of Cloth Nappies

When Tristan was born in 1995, I used cloth nappies – the terry towelling square kind that you fold yourself and fasten using safety pins and covered in the PVC plastic pants (gosh I suddenly feel old). Then we upgraded to using ‘Snappies’ to hold them together which was a bit easier. Eventually, I ended up transitioning to disposables all the time once he was at daycare full time.

When Liam was born we had every intention of using cloth nappies and I bought about 3 dozen terry towelling nappies and new snazzy cotton covered PVC covers with velcro and some Snappies. We never used ANY of them. I went back to work when Liam was 10 weeks and it was just too much effort. The nappies got plenty of use as ‘chuck rugs’ however and still do with Alyssa. I put all the covers and liners and Snappies in a box and they stayed there until yesterday when I sold them all (I’d hate to think how much money I lost on them, but happy they’re going to someone who will use them) in mint condition.

The new thing these days, for those not in the know, are MCNs (Modern Cloth Nappies). They are cloth nappies but work very much like a disposable. They’re fitted like a disposable and do up on the sides with either press studs or velcro and have extra padding (boosters) inside if required. They have a waterproof lining inside the material layers so you don’t need to use a cover. They’re AWESOME! And what’s even cooler is they look gorgeous.

So we bought up a few to use with Alyssa, thinking I’d be home from work for a lot longer. That didn’t happen but we had a few of the nappies so we decided we’d better at least give it a try and see how we fared. It’s turned out remarkably easy.

Aside from a nightmare pooey nappy Warren got on the first day I left for work with Alyssa in a cloth nappy (I won’t share the details of the text message he sent me … lol) we’ve transitioned quite well to almost full time day use. They’re not really absorbent enough for Alyssa over night as she’s a big wetter, so we use disposables overnight but during the day they’ve worked really well.

I’d love to just buy every nappy I love the look of but I’ve had to be very careful with spending but I have bought a few just because they look gorgeous. I’ll add some more photos later but here’s a couple of our favourites. They’re almost too cute to put clothes over so I’m looking forward to summer when wearing just a nappy and singlet is quite reasonable. I’m not sure how all of her other gorgeous  clothes will feel about that but they’ll have to get over it I guess 🙂

Alyssa wearing her gorgeous Bubba Moo giraffe print cloth nappy.

I think the Bubba Moo nappies are my favourites. They come in OSFM (one size fits most) so they’ll fit Alyssa as she gets older, whereas the itti bitti nappies (see below) are great too but come in Small, Medium and Large – she’s currently in Mediums and running out of room fast. I think the Bubba Moo nappies also absorb more – she certainly seems to be able to wear them for longer.

Alyssa wearing her itti bitti dlish cloth nappy.

Alyssa wearing her itti bitti d'lish cloth nappy.

We’re definitely doing our part for the environment. Our main aim was to save money and I’m not sure if it’s THAT much cheaper (at about $25-30 a nappy) than using disposables but if we’d had these for Liam as well, we’d definitely make big savings. We did try some MCNs with Liam a little while before Alyssa was born but when we went to hospital he wasn’t using them and it was hard to get him back into them when we got home. Toilet training is our next phase for him anyway.

Liam Going To School

Finally I found out the information for the local school’s playgroup and they run a Birth-4 years session on Wednesday mornings each week so we finally made plans to go.

I never know if I’ll be working or not on a Wednesday so I only gave Liam a 10 minute warning that we were going to school for the first time and he really had no idea what to expect at all. On our first day, Alyssa stayed at home with Daddy so that Liam and I could concentrate together and familiarise ourselves with how school works.

We arrived just before 9am, signed in, put our apple in the sharing bowl and hung up our bag on the bag hooks. That’s when we looked around and realised there were LOTS and LOTS of people – kids and grown ups – and we suddenly got hit with a massive boost of ‘nervous’. We hid in a corner and looked around the room to see what sort of things were on offer and when there was a clear line of sight we bolted for the big LEGO box that wasn’t being used.

After the LEGO, we played with the cars, aeroplanes, trucks and even more exciting, a few helicopters.

We also had a go at some puzzles and did a collage pasting.

Everyone sits down together at 10:00 for morning tea and shares the fruit and snacks we all brought along. Liam was incredibly nervous but I managed to convince him to sit and have a try and he rediscovered a love of mandarins so we had to make a detour on the way home to buy some mandarins.

After snack time it’s story and singing time but Liam wasn’t going to have a bar of it so we escaped outside to get away from the crowd for a moment and discovered a whole new set of fun, an obstacle course

bikes (which we found a bit tricky)

and a sandpit

with more trucks…

I eventually convinced Liam it was time to go inside – he didn’t agree it was time to go home.

And then he found the home corner with all the kitchen equipment and he was never going home. He loved it and wouldn’t leave until he had packed all of the food into the oven and microwave.

On Liam’s second visit to playgroup he wouldn’t leave until he’d packed away the entire kitchen with all food back in the baskets and all cutlery and plates and cups in the right drawers and shelves. Ahhh good boy! He made his Daddy proud.

After I finally dragged Liam out of the playgroup room he discovered lots more fun outside – a giant computer keyboard with the letter ‘L for Liam’.

And he had to jump on every single number in the number snake.

On our second visit we took Alyssa with us and did some painting with the rollers, as well as some hammering with the tap tap boards and the usual, LEGO, cars and trucks and kitchen. We did sit down to listen to the story this time and Alyssa had lots of fun trying to eat everyone’s shoes she could reach (the other kids weren’t terribly happy about it though) and having a dance to ‘Galumph went the little green frogs one day’ (a bathtime favourite of ours) and ‘5 little ducks’. She got quite the groove on. Daddy couldn’t make it as he had a phone meeting to attend to, but hopefully he’ll get to come with us tomorrow morning.

Panic Attacks – NOT FUN!

This is rather personal but as the day has gone on I’ve realised it’s deeply embedded in our journey with Alyssa so I wanted to share it as a very real part of this trauma we’ve experienced.

This is not the post I was expecting to write after a wonderful weekend away catching up with family and friends and I don’t want to take away from that so I’ll fill you in on the weekend later. We’d been away from Saturday lunch time until tea time Sunday night and watched my brothers play soccer, visited my grandparents, my family, Warren’s family, good friends Heather, Pelham and Bridget and a special visit to good friend Bob and to meet Tristan’s new cousin William, so it was an action packed weekend. We got home and my brother Bobby came to stay for the night, ready to head to Hobart for TAFE bright and early this morning and I got up for work this morning as I usually do, feeling tired as I usually do but otherwise okay.

I was standing in the shower, thinking of some special friends of mine going through a tricky situation at the moment and I don’t know what I was thinking after that but suddenly I felt my heart plummet to my feet and my legs went all wobbly and I squatted down for a moment but then it passed and I stood up. It scared me a little bit because it came out of nowhere and it was the exact same feeling of my heart hitting the floor – that same feeling I went through that moment I was sitting in the NICU when the doctor told me Alyssa may not make it and she needed to go to the Royal Children’s Hospital Melbourne. Straight after that happened I remember I started shaking and sweating and groaning and crying and releasing my grief in a very primal way – a complete state of shock. It was the worst feeling I’ll always remember and I never wanted to feel it again. I don’t think this feeling was as serious but it definitely put me mentally right back in that chair I was sitting in.

The feeling was over in an instant and I felt fine and wasn’t upset about it so I continued to get ready. I often have flashbacks to that moment but it’s more mental, never physical, so it did bother me a little. I went and got a cuddle from Warren and would have happily stayed in his arms all day but I had to get to work and I felt fine so I got myself ready.

I always feed Alyssa very last thing before I leave but she’d woken at 5 for a feed and was still fast asleep at 7 when I’d normally get her up. Warren wasn’t feeling well so I decided to leave them all sleeping. I had a moment’s anxiety of ‘maybe I should just feed her anyway / no she’ll be fine / but maybe I should / no I won’t’ and I left.

It’s about a 40 minute drive to work and I was on my own today – not with my usual car pool girls, Nat and Bronwyn. I was sort of wishing I’d had them to talk through my morning episode with but figured I would later when I saw them.

About ten minutes into the drive I got a bit shivery. Then I felt a bit teary and I tried to talk myself out of it, thinking I was just a bit worn out from the weekend, and I’d be fine. Then my legs started shaking and I was finding it hard to breathe. I actually sensed my lungs squeezing breath out – a very bizarre feeling. At one point, about ten minutes before I got to school the full blown tears started and I sensed myself groaning a little and hearing that sound made me realise I couldn’t stop this – it was exactly what happened that day in the hospital. I contemplated stopping the car but then I worried myself and thought if I stopped there I might lose it completely and then I wouldn’t be able to get to school or get home. I kept driving and kept trying to talk myself out of it.

I got to school and sat in the carpark for a couple of minutes wondering if I could get out, worried of seeing anyone. I realised I wasn’t going to make it and even if it took me 2 hours to calm down I’d be heading back home. I needed to go and tell Janet (senior staff teacher) that I wasn’t well and wouldn’t be able to teach so I hopped out of the car and my legs almost collapsed. They’d been shaking so hard and I felt like I’d swum to school. I steadied myself and walked into the staff room, saw Janet and before anyone had a chance to say hello I dragged her off to find any space where I could fall to pieces – and I did.

Poor Janet, it must have been the biggest shock to see me like that. I simply had no control over my body at this point and I was crying because it bothered me, not because I was emotionally upset. I knew it was a panic attack by now and realised I had to just go with it and I just suddenly needed that healing touch and asked for Nat or Bron who hadn’t arrived yet. Janet talked to me for a bit and calmed me down enough to go to her office out of everyone’s way. Thank you thank you thank you Janet. She asked if I wanted to go and see a doctor nearby but the last thing I wanted to do was have to explain the whole story to someone I didn’t know which might set me off again. I’d already decided earlier that morning to call Flora, the social worker from the metabolic doctors team at the RC Hospital – hoping to get in touch with her before this happened.

I’d spoken to Flora a lot while we were in Melbourne and she was fantastic and perhaps now, the best thing she ever told me was that I might have a bit of a relapse one day when I least expected it. I thought I was expecting it but apparently I wasn’t. I was expecting to one day be a heaving, crying mess blubering with emotion, not to one day suddenly lose control of my body. That took me completely by surprise.

Anyway, I waited in Janet’s office until Nat and Bron arrived and they came rushing to find me. I had mostly calmed down but seeing them just started me off again with the tears. My legs still hadn’t stopped shaking and my lungs were still squeezing and my head was spinning around. I just reached out and Nat got to me first and I just held her and cried and cried.  At some point while they were there, after Nat tells me she was considering tying bricks to my legs to stop them trembling 🙂 I felt it all ease off. My legs stopped shaking, my lungs stopped that squeezing sensation, my head stopped spinning and the tears stopped. I remember smiling along the way so it wasn’t too traumatic – it was more bizarre as I tried to understand how all of this happened and why I couldn’t stop it. Nat and Bron sat with me for half an hour listening to me and holding me and just being there. I am so thankful for their presence.

Nat decided I wasn’t driving myself home and Janet organised to cover her class so she was free to take me home. I knew I’d be right to drive eventually but it was probably for the best that I didn’t. It was actually really helpful to just randomly chat to her and take my mind off it all a bit.

Warren met me at the door with a hug and a baby waiting to be fed. So I sat on the couch and fed Alyssa while Warren took Nat to get her own car to take herself back to work (thank you soo soo so much Nat). I got Alyssa fed and settled and called Flora in Melbourne and she was again, fantastic.

I think I pretty much counselled my own way though it but it was nice to hear her agree with me and confirm what I’d believed was happening.

It was probably a combination of having to go over Alyssa’s story again with family and friends on the weekend, the emotional energy I gave to a special friend, a busy weekend, and potentially my decision to not feed Alyssa this morning got me. Considering the major trauma of her issue was keeping her fed to keep her alive, although I was certain I’d come to terms with that now, perhaps a very primal part of my brain wasn’t comfortable leaving her unfed, even though my conscious told me she was well fed and ok.  it might even be the fact that catching up with everyone on the weekend really helped relax me physically. Life has been challenging and stressful beyond Alyssa being sick with work and money so I haven’t really sat and chilled. Perhaps I’d been holding a lot of physical emotional energy until a point where I was able to deal with it.

Flora said I might expect little aftershocks (none so far) but if I keep having the attacks to see a GP and get referred to a trauma counsellor. Again, I think I’m okay but today took me completely by surprise so who knows. I know to be ready (if I can)  for it now. I’ll know what it is next time.

After I spoke to Flora I had a chat to Mum (thanks Mum) and filled her in before she read about it somewhere and we had a good chat. I fed Alyssa again and put her to bed and fought against the urge to do something (even watching a movie) and just went to bed. My body was exhausted – totally shattered. I dozed for an hour or so, Warren fixed me some lunch and I slept again until Alyssa woke up 3 hours later.

So now I’m up, still exhausted and frazzled, but feeling ok. Our minds are powerful things – and definitely know how to take charge if they want. It’s a scary thing to be so powerless when you truly thought you were doing pretty well. But what we went through was very traumatic – we accept that. And along with that we need to accept these things that come our way. It’s part of the healing process. It’s all part of Alyssa’s journey – our journey with her.

I am so thankful for friends who understand.
I am so thankful for family who love me and need me.
I am so thankful for a special little girl who fought what was happening to her body so I could still hold her when this was over.

Mother’s Day

Alyssa wanted to be the first to wish me a Happy Mother’s Day today – at 1:30 in the morning or thereabouts. YAY! And Liam decided he wanted to get in early too and needed some help ungluing (poor little guys both have conjunctivitis) his eyes at about 4:00am and then hoping for a lovely sleep in, I was woken by Tristan at 6am who’d decided he could no longer sleep and was making an awful lot of noise making his breakfast. So I started out in a great mood, but Warren finally got himself out of bed, taking Alyssa with him so I could have a lovely sleep in for another couple of hours which was lovely.

I was later woken to receive a new pair of fluffy slippers and a card containing a voucher for one free car wash, so Warren helped Tristan get started with that while I got ready for the day.

Warren’s Mum, Dad and Grandma came up to spend the day and have lunch with us which was a lovely, relaxing way to spend the day. I’d hoped my Mum and Dad could come up too but Mum had to work so we’ll catch up with her soon.

All in all, a simple, quiet day but new slippers, a car wash and a sleep in – sounds pretty good to me 🙂