Jovie’s Rett Clinic appointment!

Jovie’s visit to the Rett Clinic at the Children’s Hospital at Westmead was on Friday – it’ll be an appointment we’ll attend every year, forever basically. It’s really great to have such a great team that can answer my questions and also spot things that are common with Rett. We love our regular GP, but having access to Dr Ellaway and the therapists there is such a great resource because they see girls with Rett all the time – it’s their speciality :)

After doing a mad rush to get all 3 kids ready before 8am, leaving Miles with Grandma and dropping Jasper at school, we navigated the morning peak hour traffic (horrific) but got there with a few minutes to spare – phew! (Though I should say, we feel lucky that the Rett Clinic is within 20 minutes of our home – I know families that travel by plane to get there).

We didn’t have to wait long (yay) before the team of therapists took us down to the play room to do an hour of therapy before our Rett Clinic appointment. There was an occupational therapist (OT), speech therapist (ST) and music therapist (MT, I guess? lol). We’d never had music therapy before – but Jovie LOVED IT. At first she didn’t know what was going on – all these new people – but she loves her music so it didn’t take long for her to warm up to it.

The MT was awesome – she’d play guitar and get Jovie to help strum. The OT would help position Jovie – and we learnt that holding one arm (gently) to her side, would encourage her to use the other arm/hand to play! The OT gave us an arm splint to use since it looked like it could come in handy (it did). The speechie would jump in there and help Jovie communicate a little better with what she wanted to do next (cymbal, drum, piano, dancing or nothing). As she was doing that, I had some great talks with the OT and ST about any issues and how we’re doing. I have a big note written down to follow up on getting the paediatric stroller for her soon, then a hi-lo bed and a hi-lo chair for mealtime.

Before we knew it, the hour was up and we went over to the Rett Clinic room.

The Dr was there, aswell as the Nutritionist and our super amazing Genetics Counsellor (who has seen us through all the Rett Syndrome stuff aswell as the CVS & Amnio I had with my last pregnancy). Again, to be in a room with people that just ‘get it’ is comforting – and Jovie was super happy to see them too!

Her checkup went well – no scoliosis, she’s eating healthily, sleeps well (for now, haha), and is doing pretty good generally. They were worried about her stomach bloating though – Jovie swallows alot of air and holds her breath but her stomach doesn’t seem to ‘deflate’. So she’s had some blood tests for lactose intolerance and coeliac disease (familiar?) – we won’t get the results for a week or so but have started on a lactose free diet just to see whether that will help.

After meeting up with Regan (he works in Westmead and happened to have a half day) and getting Jo’s blood taken, we set off home so we could pick up Jasper & Miles. A slightly busy day but an interesting one!


what a difference a year makes.


Jovie 1 year ago today…

as i was thinking about how fast these 8 weeks have gone, i thought about how fast the past year has gone and how much we’ve packed in, just living life.

* June 2012, we received Jovie’s Rett Syndrome diagnosis. almost a year to the day of Miles’ birth actually which is a cool thing.
* Regan popped over to the States to visit his family in July
* Jovie and I had pneumonia
* I fell pregnant
* Our family and friends fundraised for Rett Syndrome Research in Australia and ran in a fun run
* My sister gets engaged
* Jasper had his adenoids out
* Jasper started school
* Regan started a new career
* Jovie started at her Autism specific day care
* I got back into photography (yay me!)
* Miles arrived!

i think as a family, we’ve packed in more things in the last 13 months than any other year. makes me wonder what’s coming up in the next year :)


at 8 weeks

miles at 8 weeks

Miles is now 8 weeks old and we’re finally settling into a good routine as a family of 5.

the adjustment has not been too bad – it’s mostly the sleep deprivation that has been the hardest on me (sometimes only 30 minutes a night) and i know that Jasper is also feeling the squeeze of having another kid steal the time and attention away from him.

having Miles has been a dream, no complaints. we’ve been co-sleeping with him and i adore the overnight snuggles. he’s starting to sleep longer at night (5-7 hours between feeds) which has been awesome and is coo-ing and making great eye contact with us. it’s adorable, all over again :)

my csection area is feeling pretty good also – no more weird dull pain or sensitive areas. yes there’s the dreaded csection flap but i’m only 8 weeks post partum and wasn’t a supermodel to begin with LOL. i’ve been back into kettlebell (strength training) and elliptical, and am trying my hardest to eat as clean as possible
(though i think my period is back already and the cramps & moodiness make it hard for me to resist chocolate…)

so in between the school drop offs and pick ups, catching up on sleep, housework, laundry, eating well, exercising, nappy changing, tandem feeding and homework, i’m slowly thinking about the rest of the year ahead and getting back to ‘normal’. i want to continue my newborn photography practice and have some great ideas – but will need to save up some $ and build it right the first time. i’m very aware of not overdoing it – Miles is already 8 weeks and i’m so so lucky to be home instead of going back to work at 6 weeks like i did with Jasper and Jovie.

time is flying! i’m going to enjoy it.