baby

Wow

20th March
2013
written by tom

Bouncing baby

Three months ago, Hannah could hardly move.

20th December
2012
written by tom

The silence of the 5 months since the Great Diagnosis was finally broken.

The Great Awakening took place on Monday, 17th December in the late evening; for the first time, Hannah cried long and loud. It was as if she had awakened from deep sleep to experience the world, its aches, colours, sounds, for the first time.

Nothing can ever compare with the sounds of this unfamiliar cry; a kind of halfhearted whimper that magnified uncertainty over its validity.

I hoped, that very moment, that Hannah would never leave us again.

9th November
2012
written by tom

Driving home from the hospital late that night in February, I was amazed that the world appeared to be oblivious to the historical event that had taken place. My daughter – Hannah Rosalia – had just been born, and in that forever moment of wonder it was as if the world would surely come to fully appreciate her arrival.

Of course it didn’t, at least not directly. But it carried its own significance through me, and thereby, as proxy to the good news, the world will change, will be saved in some wonderful way. For one, the proper estimation of a new born child is that it will save the world; this is the only reasonable starting point.

Five and a half months later, as the diagnosis raced to bury me, the shattering news found me unprepared, incoherent, astonished, angry and beaten. Everything, it seems, had changed. Everything now carried the strain of the diagnosis. The pre-diagnosed Hannah was but a memory, fleeting away as quickly as she herself appeared to be. We start to mark our days with reference to August the 6th.

September 6th marked the one month milestone beyond which a cure and an easy recovery, and confidence in the corpus of modern medicine gave way to mounting doubt.

October 6th marked the two month milestone and brought home to complexity of treatment amid the introduction of a third drug and the 5th different combination cocktail.

November 6th and we end the third month under the spell of West’s Syndrome with different drugs, more combination cocktails and the looming realisation that the chances of a full recovery has dropped below 10%.

But it also marked a change, toward a different type of world, one that we wanted to shape for Hannah and for people like her.

5th October
2012
written by tom

It’s amazing what some thought and the falling of words into place can do.

Our Mission:

Our ultimate goal is to maximise Hannah’s chances for an independent, meaningful life. Hannah, July 2012

Toward this end, we want to make the best medical expertise available for our daughter.

Hannah has been very ably attended to by two paediatric neurologists in Singapore.

We are seeking additional opinions in order to –

  1. confirm the initial diagnosis (of “Infantile Spasms”);
  2. augment (or refine) such a diagnosis;
  3. seek more effective medication to resolve the condition and the underlying hypsarrhythmia;
  4. understand and investigate all possible causes of the condition – genetic, metabolic etc. – and to treat these where possible;
  5. explore alternative, non-traditional forms of treatment, including concurrent ketogenic dietary regimes and accelerated physiotherapy treatments;
  6. consider other, more evasive surgical solutions.

2!

18th May
2010
written by tom
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11th June
2009
written by tom
Gillian has out grown her first carseat

Gillian's new super-duper, front-facing (second) car-seat

8th June
2009
written by tom

6th June
2009
written by tom

It seems baby and Bacchus are more alike than we previously thought.

For example:

  1. Both love to tear up tissue paper;
  2. Both find their way, without fail, to the master bathroom;
  3. Both are afraid of balloons;
  4. Both like mangoes;
  5. Both tend to find, and subsequently munch on, clothe-pegs;
  6. Their sighs are pretty much the same.
29th May
2009
written by tom
Here it is!

Here it is!

24th May
2009
written by tom

In appreciation of United’s forthcoming game versus Barcelona (and this afternoon’s game at Hull), we have our household’s third-most fanatical United supporter.

Thanks for the DNA, Papa!

Thanks for the DNA, Papa!

22nd May
2009
written by tom
Thanks for the DNA, Papa

Thanks for the DNA, Papa

18th May
2009
written by tom
feeling poorly

Baby's feeling poorly

8th May
2009
written by tom

See, The Real Secret with babies is this.

With each child, God – or Mother Earth, or Fate, or The Divine or howsoever one describes “it” – miraculously gives you more of Life. I swear this is true. If you don’t believe me, just do the math.

Say you sleep for 5 hours a day for the first 18 months of your baby’s life. That’s three hours less sleep per day than normal. So you see, God has granted us Lucky Parents an extra One Thousand Six Hundred and Twenty hours.

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8th May
2009
written by tom

We’ve been busy lately. Well, I have. Baby, on the other hand, has been up to no good. In fact, she’s started picking her nose.

grvnosejob
It doesn’t seem to faze her that it’s her mom’s nose that she is picking.

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