Frames for baby blue.

There is something magical about Wade’s eyes. From the moment he fixed his eyes onto mine, on the day he was born, I have been drowning in those pools of wisdom. He says more with his eyes than he can with gestures and speech. Without a doubt, I love those crystal blue eyes more than anything so I was very worried when at about 9 months old, I noticed that his eyes weren’t tracking together. It would only happen for a second or two but it was there. Luckily Wade’s uncle and aunt who are both optometrists were staying with us not long after it started happening and recommended that we see an ophthalmologist.

We booked in and the ophthalmologist examined his eyes through this binocular type device and identified that he is very long sighted. She explained that when the eyes look long distance they should be at rest but if you are long sighted, they struggle to focus causing eye strain and fatigue which can cause one eye to drop inwards. This is known as Accommodative Esotropia and is quite common with people with Down Syndrome due to the low muscle tone. Low muscle tone is best described as the muscles having to work harder than normal to achieve the same outcome. Like walking in water or walking uphill. It is not the same as muscle strength. Therefore, if you are long sighted and your eye muscles are straining to focus, they work even harder if you have low tone which causes the weaker eye to give up and eventually it can drop inwards permanently if left untreated. This can mean eye surgery or permanent vision impairment. Continue reading

How a film can pull the rug out from under you.

The early months with Wade had their ups and downs but most of that was due to fact that we were new parents and were working this thing out as best we could. Down Syndrome played its part but only in the practical hiccups that we had along the way. There were more doctors appointments than usual, more information to understand and more time spent working on his physicality to help with his development. The thoughts I’d had during pregnancy about what it would mean to raise a child with DS didn’t change after he was born. Wade was happy and healthy and Down Syndrome was not much of an issue for us, luckily. I felt validated that all of the research and mental preparation I had done had paid off and I was already realising that Wade was capable of surprising things…

Then….

Continue reading

Nutty new mum

Wade was (still is, although there is some stubbornness creeping in) a dream baby. My idea of having a newborn in the house was, scream, scream, poo, scream, finally asleep, shh, shh, creep around, don’t wake the….dammit, scream, more poo, dried spew in your hair and maybe a smile every now and then.

Wade hardly ever cried. He settled quickly into the feed, play sleep routine. When he fell asleep, nothing really woke him. He usually slept for an hour on the dot and woke up smiling. In fact he smiled most of the time and only pooed once a week for the first 5 months of his life. I think this is actually due to the low muscle tone meaning that everything took longer to work its way through but I was counting it as a win. Other mothers would groan as I complained about how he was getting a bit grumpy as poo day was coming up, when they had just cleaned the third poo for the day off the walls, the floor, the car seat, change table or whatever else was nearby.

And he was this cute too….

20130408-231733.jpg

20130408-231958.jpg

Continue reading

Breastfeeding highs and lows.

The morning after Wade was born, we were lounging around in bed waiting for the paediatrician to come and give his assessment as to whether Wade had DS or not. We already knew that he did but this was a necessary procedure as you need an official diagnosis by blood test which has to be ordered by a paediatrician. They also assessed him to see if there were any underlying health issues.

My sister, Sammy, was there when the paediatrician arrived. He also had with him, a visiting paediatrician and a trainee. So, I’m in bed with Wade, Mick was at home getting a few things and Sammy is sitting on the bed too. At the foot of the bed is a wall of doctors. They take Wade to examine him and the two paediatricians explain everything to the trainee. They pointed out all of the physical characteristics of DS to look for when doing an assessment. Continue reading