Saturday, September 27, 2008



This is the messy job the cardiology technician did for Sheena's 24 hour Holter monitor test. Hard to get good help these days it seems. She did not have a blue episode during the test (as is the way these things go).

Friday, September 26, 2008

Holter Hazards

Sheena has her Holter Monitor on today. She has it descreetly hidden underneath these clothes, and I am not drawing any attention to it for now, so no photos of it directly. The technician fitting it annoyed me because:

1) He kept on calling Sheena a boy
2) He offered no advice on how to keep the thing on a 2 year old

He handed me a strap to sling over my shoulder to hold the device. As much as I love Sheena, I have no intention to staying within 1 meter of her for 24 hours. I said what about a belt, and he then presented a few adult size belts. We ended up wrapping an adult size belt around her twice. The cords are all messy, and I know they can done much neater, and even put in a box to keep them all together. This is why we usually go to The Children's rather than Monash, but her Cardiologist is based at Monash so its a bit tricky to negotiate.

Anyway we are managing well with the holter monitor, and Sheena still had one of her mammoth naps even though all she did today was walk in and out of the hospital. Of all days, when I want to minimize all clothes changes while Sheena has all the bits attached to her, she did the poo-wee sign to show she needed to do a poo. Not the day for a rushed trip to the potty. Definitely time to start potty training I think.

Tuesday, September 23, 2008

We're off to meet THE Wiggles

Sheena has been invited to meet The Wiggles. I am very excited, and know that Sheena won't be able to contain herself. Sarah from the Wiggles office called me today to confirm that Sheena (and us) can meet the guys before the show. We'll meet them in December, and we'll be sure to get lots of photos.

Parker has provided us some information on Pulmonary Hypertension. I like action, so waiting until Friday for Sheena to have a Holter Monitor test, then next Monday for her to meet the Respiratory and Sleep Specialist is very hard. I've got a small sty in my eye for the first time ever, no doubt due to stress from not knowing what we are in for.

Saturday, September 20, 2008

Now that's a helmet

Hubby has a new motor bike, and of course Sheena has to get in on the fun.

Unfortunately, from a health perspective, Sheena has been rather complex for the past month. She's had a number of blue episodes, and they are now coming once or twice a day. She is also now sleeping 12-13 hours over night, as well as having a 3.5 - 4hr nap during the day. On top of this, her appetite is significantly reduced.

We purchased an oximeter from ebay, and her oxygen levels and HR are dropping significantly during these blue events. We visited her Paediatrician, and he ran some tests - including Thyroid, allergies and FBE, and they all came back normal. He also referred us to he cardiologist who we went to on Thursday. The echo showed she has Pulmonary Hypertension, which can be very serious if its primary, so we're hoping its secondary and due to some airway obstruction or sleep apnea. I'd rather it be nothing of course, because none of them are straight forward like taking a pill in the morning. She's now booked to have a 24 hours Holter monitor test next Friday which will check her heart beat overnight, and then due to see a respiratory and sleep specialist the following Monday. Ughhhhh - stress!!!

Tuesday, September 16, 2008

Howdy Partner

She now loves Dora the Explorer as much as The Wiggles. She's going to see the Wiggles live in December. I don't think she'll be able to contain herself.

She's still rather wary of Roy. I think she is scared of hurting him. We taught her to be gentle, but I don't think we overdid it. Three months down the track, she usually keeps a wide berth from him. We have to encourage her to give him a cuddle or hold his hand. Never mind, plenty of time for that.