A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Sunday, 4 October 2009
I wonder how Many other 8 month olds have been to the cinema 4 times! Today Hope went to see Fame! She was so excited that she woke at 4am and didn't go back to sleep till 9. Mind you, this was a good nights' sleep for us both 11:30-4:30: a whole 5 hours stretch which is pretty amazing compared to most nights when she wakes every hour. This morning Honko clearly felt well rested because she was sooooo alert and playful. She was really paying attention to her light up toys (it was still dark, though we saw it get lighter). She was also using her hands a lot; Grabbing onto things and touching me. Not sure how intentional these actions were, but definitely a step in the right direction.
The antibiotics have kicked in, and she no longer has a leaky eaky. She must have been feeling rotten, and now much better. It's so good to have her back to her happy self. Today she's been happier than she's been in weeks. She hasn't even cried all day!
Hope dressed appropriately for today's film: Leg warmers! (see photo). As always Hope was beautifully behaved. I think she really enjoys the cinema. It must be the dark, with the light of the big screen and all the noise. Oh and maybe the milkybar buttons she had today. As usual she let out a few excited shouts, but no crying.
Today Hope tried a new food. Avacodo. Of course she ate it all up. I am yet to come across a food she dislikes *touch wood*. she also had some sweet potato (one of her favourites), followed by a milky bar dessert :0) mmmmm.
Today I have enjoyed my honkiplops soooo much. We just had a bath, she's just having a feed, and we're all gonna watch Xfactor. Sometimes it feels like I have it all ...
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.