A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Tuesday, 20 October 2009
I can't quite believe it; at dinner time today, Hope let out a big shout and I caught sight of 2 lil teeth. I put my fingers in to check, and sure enough... 2 tiny, but perfect lil teeth broken right through!
Bless her, she seems to have done it fairly effortlessly; no crying, fever, dribbling etc. It might help that she's been rather knocked out the past 2 days because I had to increase her meds again.
She's been on top form again today. Very noisy. She even seems to be aware of her hands today; she seemed to be thinking about grabbing her mobile, and she yanked my hair earlier and has been putting her fists in her mouth (not surprisingly on the latter).
It's slightly bittersweet .... It means she's growing up... Well her body is.... It also may mean I need to stop breastfeeding. I fed max till he was over a year old. But that's cause he was able to learn quickly not to bite me.I'm not sure if hope will be capable of that. Touch wood it's not going too badly so far. Just once!
Jordan and Max are on half term now. We've had a lovely day of Lego, knitting pudsey bear, and making jelly and angel delight. I love having them home. I've managed to rearrange a couple of Hope's appointments. Though there are still a couple, I didn't want their holidays to be dominated by hospital appointments.
I spoke to the occupational therapist about Hope's highchair yesterday. She's gonna come out and have a look at her in it, and bring along a 'special' one too to see how she gets on. At the end of the day, I've got to do what's best for Hope.
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.