It's all part of the plan...

These last couple of weeks have been nothing short of ups and downs. I have now come to accept the concept that life is more than likely going to follow this pattern for some time. I aspire to be the friend, mum and wife who can roll with the punches and exude flexibility and effortlessness in my ability to change tack. I am not like this, I am inherently structured and keen on plans and order! However, my efforts to remain wed to plans are slowly giving way to acknowledgement that rigidity and all the planning in the world just can’t work all the time. Some days we do (perhaps somewhat naively) reach the point of thinking wow, life is beginning to be a little consistent, but then bang- something happens that quickly and swiftly pulls the rug from beneath your feet.

Last post Benj updated on Ira’s recovery from surgery. He did so amazingly well for his first major surgery on his head. About 4 days later however, he went down like a tonne of bricks with a temperature nearing 40 degrees Celsius and a definite change in personality- no more squeals and chatter, but more sleep and grizzles. After another stay in hospital we got him home and he has been a very happy boy. Lots of smiles and chatter - however we think he's having trouble with teeth now!

Edie has me fooled a lot lately.
Sometimes I have to stop and stare when she is talking to me- to check that she is really only a 2 year old. She was bouncing around on a chair in the bedroom the other day and threw the clothes that were ‘tidily placed’ on it, on the ground so that she could slide down it’s arm with greater ease. I gave her a look- which she understands instantly, and she chirped back ‘don’t worry mamma, it’s all part of the plan’. I couldn’t knock it really! I just didn’t manage to convince her that the plan should also include her putting the clothes back on the chair after she had finished playing.

She has also been working on her fetish for making beds everywhere and having just a short ‘snooze’ before she gets up to go to work. In addition she likes to drink pretend wine like grown ups and make us all lattes and flat whites. In stark contrast however, when asked what she wants to be when she grows up, she is insistent on the fact that she just wants to be a little girl. Now that is something we like and encourage her to be for as long as she likes.

It is quite a bizarre thing how such a precious little dot can be so onto it in one moment and in the the next, because she is filled with so much excitement and urgency to get her point across- it comes out all wrong. She told me last night that she met Bob the Builder in Australia when she was born. This translates (I think) to a number of things. First, she is very proud of the fact that she was born. Knowing that her little brother was born not so long ago, there are many references and links at the moment to her having done things when she was born. Second, she quite likes Bob the Builder but has never met him and I don’t know if Bob the Builder has been to Australia. Third although Edie hasn’t been to Australia, the Wiggles are FROM Australia- and she has met the Wiggles (well, seen them live as opposed to on tv). I love the way all of this information spins around in her mind and sometimes works to come out just spot on, and other times although proffered up with such conviction, is hilariously mixed up.

Benj and I are so proud of Edie. She is such a caring big sis and although for the most part baby Ira only gets her undivided attention when Mum or Dad are tending to him, we often find little books or toys left for him in his cot. She is also expert in copying me by giving him the odd pat on the back if he’s in need of it and telling him everything is ok. Ira adores her, stares at her with such admiration and chuckles at anything she says or does.

Next goals for Ira are just to enjoy being a baby boy! His fingers have finally healed so no more bandages. We received good news on Friday. He has all the blood vessles and arteries needed to separate the last two middle fingers on each hand. So his next operation will be taking care of that, deepening the web space between his thumb and forefinger, and first round of toe separation if we reach consensus on that. His thumbs grow at right angles basically- so these will also have to be straightened later on. The next hand operation won't be until the end of the year or early next year- so, some welcome respite.

Next goals for Edie- let's see. Nothing but fun family and friends.

Springs and fevers

I'm so tired, haven't slept a wink
I'm so tired, my mind is on the blink
I wonder should I get up
And fix myself a drink – no, no, no, no

Ira had springs put into the back of his head a little over a week ago.

This is a good thing.

The springs are piece of tensile wire that when in place, keep the sutures in the back of his head from fusing too quickly. With Apert Syndrome the bony plates in the skull tend to grow together prematurely. This forces the brain - as it grows - to go wherever there is room, not necessarily where it should. In Ira's case, this is most places but back. The back of his head is flat, which in turn can cause difficulty for the flow of cranial fluid from the brain into the spinal canal. Pressure at the back of the brain can also mess with the optic nerves, causing blindness in the worst cases.

So, the springs will allow the brain to grow into the back of his head - make for a rounder swede and generally ease pressure upstairs. These are good things.

Unfortunately any trip to the hospital brings possible calamities. Having come out of his operation without problem, Ira came home for just a couple days before developing a fever. A suspected lung infection spiked his temperature to a high 39C (104F for our American peoples). Additional swelling around the head didn't help with our freak-out factor, so we were back in hospital for another week.

So why the John Winston Lennon lyric? You never rest in hospital. I'm blessed that I can sleep through most any carnival, but when your little boy is fevered with springs in his nut, there is no rest - even if you do sleep some -the night Maria stayed she got about 2 hours.

Fortunately after close observation and a clean CT scan, our neurosurgeon Wicks sent us home - folks that tinker with brains tend to favour caution.

So, we're all tired, but thankful to be home.


One bonus about surgeries is that every time Ira comes out he has learned a new trick. For several weeks we've been encouraging cognitive response to vocalese. Bah-bah-bah-bah constantly at feed time. In hospital he finally clicked and has has been saying "blah-blah-blah-blah".

I wonder, is he commenting, or just enjoying his new noise?


Next post will be all about Edie and the hijinx she's been up to while her little brother convalesces.