honkeyplonk: Still waiting, but I know :0(

Wednesday, 2 September 2009

Still waiting, but I know :0(

I just know it's gonna b the worst one. Everything I've read points to it and explains everything.
I thought we'd have heard by now, but I know already ;0(

My poor Jordan and Max
My poor honkeyplonk

How
Much can one family take?

:0(

Last night hope was just the cutest. At midnight . But instead of hoping she'd fall asleep, I just enjoyed her and took tons of photos
That's all I Can do

4 comments:

Elli (Euan's Mummy)2 September 2009 at 05:22
(((Caroline)))

Just want you to know that we are all holding you so close right now and sending all the love in the world to you and Hope. I'm sure Sam will be with you looking out for his little sister too.
Elli
xxxx
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NA2 September 2009 at 05:34
Sweetie, again a moment has come that I wish I drove so I could get over there and hugs you. Sending you loads of virtual (((((((hugs)))))) and you are in my thoughts and sending all lots of love to you, Hope and all the family. xx
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Sonja2 September 2009 at 09:08
You are all in my thoughts I keep checking back here for news, sending you so much love xxx
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Jennifer Ortiz2 September 2009 at 11:02
I am waiting to hear news too, I am sorry
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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 ).