honkeyplonk: Hope's first Xmas (in pictures)

Saturday, 9 January 2010

Hope's first Xmas (in pictures)

Since Sam died on Christmas Day, just 2 short years ago, Christmas is a difficult time for us, to say the least. However, this year, we definitely had a reason to smile!

Here's Hope in her Xmas pjs on Xmas Eve. And all 4 of my babies together on Xmas Eve-Sam's 2nd birthday, at his 'garden'.

And here she is meeting Santa with Jordan and Max at the Koalas Xmas party.

And the pile of presents Santa left.

Hope with one of her favourite toys- ELMO LIVE! He's soooo cute and funny!

Hope with some more new toys, wearing the lovely outfit auntie Mary bought her.

And Hope at dinner. She had chicken, roast potatoes, cauliflower cheese, sweet potato, carrots, cabbage, and parsnips- with lashings of cranberry sauce!!!

(If you are just catching up since my long absence, there's a new year post below)

Xxx

3 comments:

Noah's Mom9 January 2010 at 14:57
Beautiful Pictures.
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Anonymous10 January 2010 at 00:36
great that hope is getting along without seizures, is it due to a new medicine you think?and so great for you too.love. hugs, and kisses from ryan and patricia
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Anonymous10 January 2010 at 00:37
btw, she looks so sweet in her hat after eating a great meal for christmas, very peaceful...what i long for too...rest.patricia(triciah)
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To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope?
We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy.
Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love!

Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).