Leaflet Academy

sigh will I ever learn?

4:51 PM, Dec. 30, 2008 .. 0 comments .. Link

Well I've had one of those days. Ken is back to work. Jakie is still taking a fair bit of time to care for - proportionate to other babies. Expressing has been causing a lot of pain and problems. IT IS HOT!!!! And the kids have been... well, kids :)

So, for some strange reason I decided to go online and research Pierre Robin Syndrome, which Jakie has. Big mistake. I mean, he's two months old now, you'd think I should know some of this stuff. But no, there's heaps I don't know, and it's stressful stuff!

One site listed possible complications as RBS. The last one was 'death'. Yay, thanks for that.

This one site I found said that if there's Pierre Robin Syndrome we should be offered genetic testing. That almost all babies with Pierre Robin syndrome also have another condition. And that the most common condition is Stickler Syndrome, which can cause blindness among other things. I looked up Stickler Syndrome, and one site said that SS should be suspected in all cases of PRS.

Why have I not heard of this?

I just know I'm going to go to the hospital on the 19th, start asking questions, and feel like the paranoid mother from he**.

I mean, completely beside the point that on the 19th we find out WHAT the urethra irregularity that Jakie has is and what it means...

On that note, Jakie can really suck! Literally! When I'm feeding him the bottle, he can actually suck milk on his own! Well, a little bit. But it is a huge step (leap) forward for him. He is also very alert AND good at holding his head up and looking around. He is a sweet little boy and I love him dearly.

But I do pray for him at bedtime... this is the first time the 'prayer' (I know it's just a poem really) 'Now I lay me down to sleep' has some significance. It is when he is asleep that he can roll on his back and stop breathing. His apnoea alarm has gone off three times now. I am so thankful my precious baby is still alive.

I love Jacob so much.
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