A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Wednesday, 2 December 2009
Oh happy days :0)
Just a quick update: firstly apologies to regular readers who I know have been checking in for news...there is lots, but it's been so hectic here... So many appointments, plus in my spare time i've been on a bit of a knitting frenzy (well it's well and truly winter now) and ive been absorbed by the twighlight saga :0) And because there's sooo much to report from the numerous assessments and specialists, I know It's gonna take a while, but the longer I leave it, the task grows....
So this is just a snippet of good news (for a change). Hope has been SEIZURE FREE for 4 Days!!!! She's never done more than 2 days in a row since the epilepsy first reared it's ugly head 6 months ago.
Considering it's December; that I can no longer avoid the Xmas music, that we have advent calendars counting down till the day lil Sam died, I am extremely happy :0D Hope is on top form. The seizures set her back so much and Can even leave her empty of her personality when she has a particularly bad day. But because she's had a long run without them, she so happy and alert. She's been a right chatterbox and even her head control is better. Oh I hope it lasts. Forever. I know it won't, and I just hope it doesn't come back with avengence.
Any spare prayers going should be directed to Hope's little buddy, Jude, who is having a tough time at the moment www.cjengo.blogspot.com
Will try to update on all the appointments sometime this week
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.