A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Thursday, 25 March 2010
Even more good news - The Ruth Griffith's assessment
Just a quickie, and this is rather late news too, but still playing catch up... Hope had her developmental assessment (2ish weeks ago). I wasn't looking forward to it, particularly because I knew I'd leave with a number. That is an age. An age of a baby who Hope's development is equivalent to. I know it needs doing; it gives us a mark in the sand, so we can see where she is now, so that in the future we can compare her progress. BUT, it does not recognise her beautiful lil personality, nor the fact that these achievements are huge for Hope, or the fact that she can warm hearts, or as her god mother Natalia said 'make even the grumpiest of people smile'. It's just a number.
I had in my head, that Hope would roughly come up at about 2-3 months. Though at the same time, recognising that in other areas she'd probably be more than that. She's just recently gained some head control, and can now tolerate brief 'tummy time' and is pushing herself up on her arms.
I'd have been fine if they'd said 2-3 months. perhaps a little gutted seeing it in black and White maybe. But I'd get over it. Like I said, and always do, everything she achieves I'm so proud of and if she never does anymore than she does now, so be it.
Well, bless her lil cotton socks, she scored 3-4 months on motor skills, and 7-8 months on social, speech and language :0) :0) :0)
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 ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.