honkeyplonk: Photos - as promised

Sunday, 13 September 2009

Photos - as promised

6th August- Bournemouth pier in the babasling

6th September- At Bournemouth (for Max's match). Shouting at her big sis

24th August. Perfection!

18th August. Hope's favourite time of day- bathtime

31st Aug- finding herself funny :OD

24th August - looking super cute. Look at those cheeks!

21st August- We went with friends to butterfly world. Even the butterfly could tell how special Hope is :O)

We've had a nice weekend. Fairly quiet apart from football. It was a relief when Friday came because I knew we'd not get any results over the weekend, so I could pick up the phone without having butterflies in my stomach. I am definitely happier in this state of denial! No doubt we'll hear something next week.

Xxx

5 comments:

Anonymous13 September 2009 at 15:48
aww lovin the photos caroline, Hope is a beautiful wee girl wi a beautiful big smile xx
((((()))))
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Caz (Cyaden's Mummy)13 September 2009 at 23:54
Love the picutres they are so nice, Hope is such special beautiful litle girl xxxxx
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Anonymous14 September 2009 at 03:37
Caroline, The photos of Hope are wonderful, such a beautiful little girl.thinking of you all lots
much love
debbiexxxxxx
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Purple Quilter Queen14 September 2009 at 07:02
The photos of Hope are adorable. Thanks for sharing. I will be praying for you as you get the test results back today for Miss Hope! Best of luck to you all.
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jeanette caitlyns mummy x26 September 2009 at 09:48
The photo's are lovely Caroline. Love the one with the butterfly, and your so right Hope is a very special little lady x
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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 ).