A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Saturday, 17 October 2009
Honko's highchair. Take 2
I had bought a pretty pink, but also pretty standard highchair for Hope. It was no good. We tried it once, and because it was just an upright seat with no recline and only a 3 point harness, she basically just slithered down in it. I guess I Hoped it would be ok one day. In the time being, I've just had her on my lap for her feeding times.
Hope had physio on Thursday (which she slept through). I had a conversation with her occupational therapist about the situation and enquired what might be available.
This morning, I had a note from her therapist along with a catalogue with 'special' highchairs we could have. I suppose they aren't too awful, but they are rather heavy duty looking. Like her 'special' chair.
So we were in tesco's today, and they had the lovely fisher price rainforest highchair half price. We bought it. It's the dogs' dangly bits as far as highchairs go; 5 position recline, 5 point harness, 7 heights etc. Plus it looks nice! Hope did much better in it than her pink highchair. Guess I'll sell that one.
I'm still in 2 minds about whether this is a wise purchase... Or whether I'm just delaying the inevitable. Ie; having 'special' equipment. Hope probably would be better in one of those highchairs. As you can see, she's still a bit of a wonky honky (her head is inclined to go to the left). Clearly she found it comfy enough.. After her marmite sandwich, pear and yogurt, she fell fast asleep :0)
Sorry for lack of updates, but it's kinda been a case of no news=good news. It's been fairly uneventful apart from still chasing rainbows.... That is trying to control these blooming seizures again :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.