The family net

Heather's Mum, Rose has joined us in the last few months, helping out immeasurably, not least by insisting on having Jai with her at nighttime, and allowing us a proper sleep. Not that Jai wakes much anymore. The problem is laughter! Jai is and always has been a boy who laughs easily. Which is why it is easy to capture him laughing or smiling in his photos. Sometimes he laughs in his sleep, which makes me smile too. But sometimes it goes a bit over the top. In January, he got into the habit of laughing hysterically in his sleep (and waking us up)! He keeps it up for, i dunno, maybe 20 minutes, maybe longer. Then once or twice again through the early hours. He woke up happy of course, and us, exhausted and pretty grumpy!

(April 29)

We now have myself and Heather, Jai, Uma, and Noah, Heather's mum (Rose) and my Dad (Roy) living together, as well as 2 cats. So the household is pretty full, and always something's happening. Jai's certainly getting used to lots of attention, which he needs and loves. He goes to childcare for a few hours, once or twice each week. He is finally starting to verbalise more, and has just started (proudly) walking with the help of a Kay walker! 

In early April, we spent a week in Sydney, staying at a hotel overlooking the harbour and Opera house. I'd take Jai to the window each morning to look at the cars and buses and trains crossing the bridge, the ferries in the harbour, the giant cruise ships, and the moody skies. He loved the ferry trip to and from Cockatoo Island, where we visited the Sydney Art Biennale. Here's a photo of him enjoying playing with some chalk at the pop up cafe on Cockatoo Island. 

Steady, steady

The big change at home is that my elderly parents have moved in, which is great for Jai! New friendly faces, new voices to listen to, new legs to pull himself up with. 

Jai's doing a lot of cruising and pulling himself up to standing, which is great. Spending a lot of time exploring textures.. pine bark, sand, different carpets, metal grills to roll cars on... He enjoys playing outside on our balcony, but if left alone, he makes his way to the fish pond and splashes the water. Fun for him, not so much for the fish!

Communication seems to have hit a roadblock. He asks for one song by putting his hands out to me.. Row, row the boat. And he seems happy that I understand. He's showing affection by coming up to us and laying his head sideways on our shoulder or arm, which is beautiful. Laughing a lot as always. But now starting to get upset when we don't understand what he wants or needs, starting to throw tantrums sometimes. I'm not sure the speech therapy is actually doing much, except getting us both frustrated. I started reading a book about a girl with PMG, called Schulyer's (pronounced "Skyler") monster, which is making me feel somewhat better, because Schulyer also had little effect from her early speech interventions, but she grew up great, few words, but able to communicate and go to school! Fingers crossed for Jai!

We've started going to the library occasionally for story time. Jai doesn't love being surrounded by kids and song, but he tolerates it. He seems to prefer fairly quiet spaces. He loves swimming, even in our neighbourhood pool. And he is about to start going to a wonderful, spacious and friendly daycare 2 days a week... nervous times for me, i hope he won't be too anxious. Could be great for him to have some kids he can get to know. 

Two years old

Two years old now, and doing great! Making small milestones (inch stones?) regularly. No fits for quite a while. Getting ready to travel to Kota Kinabalu with Mum and Uma, to visit family. Happy birthday Jai, can't wait to spend the next year with you! Love and hugs, Dad. 

A short break

Well, this blog seems to have changed purposes.. The original purpose was to be a resource for families going through PMG. But this seems less important now, because PMG awareness (see link) and their Facebook page are such a good resources. 

But it has had other uses. Firstly, to keep my friends updated with what's going on. Secondly, to keep me free in the real world to talk about and enjoy all the other parts of life (and prevent it being wholly about Jai, lovely as he is). Third, to be a space to think about things, solidify some thoughts. 

I guess by now,  people have had a chance to catch up about Jai and where we're at. Time is precious, always much stuff to do and experience and enjoy. So, for now, I might only update this post a few times each year, alternating with a blog about all the other stuff that crosses my mind.. "News from Nowhere". 

Summer

Apart from the seizures restarting, and settling to maybe one per week, mostly good news. Saw Prof L, who upped the dose of oxcarbazepine, to hopefully reduce the frequency of seizures. Had another eeg, which seemed okay touch wood, but we're awaiting the formal report. 

Jai's crawling faster, getting into things he shouldn't be, and climbing seats and ottomans. This has lead to a couple of bigger falls and some tears, so we're trying to "practice" protective reflexes (not really sure that this actually works, but our physiotherapist is keen). Jai's started speech therapy now too, and we're trying to teach him some key signs. He's trying to communicate and is definitely getting frustrated at times when he can't. I think this is good in ways; maybe this frustration means he is more likely to learn, with our help of course. 

September/October/Novermber were difficult months, just getting through week by week. We seem to have scaled that mountain. Doing a lot of catching up now.. friends, wine, food and conversation.. having some good times, recharging, and looking forward to a good start to the year. Happy 2017!

Roundabouts and swings

We're at the other side of a tough few weeks... First viruses ran through the house passing from Uma to Jai and Heather and back again. Then Jai started waking up at the witching hour, and not allowing us to get him back to sleep, just wanting to explore and play. Heather (mostly) and me have had to take turns going to the spare room and trying to catch a few zzzz's in the dimly lit room. Naturally, our levels of energy went into freefall. These last two weeks we've welcomed back normal sleep patterns, such that they are. 

Jai's continued to have one, sometimes two seizures most weeks despite some tinkering with his medications. The good news is that they are all partial seizures, and he gets back to his usual self very quickly afterwards, no longer getting upset. He also has continued to develop well, getting better with his posture, faster at getting around, and doing more complicated actions with his hands. Enjoying being well again and being able to get outside more. And enjoying being on a swing, which is new and lovely to see.