A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Thursday, 1 October 2009
Panic! Poorly Plonky
Did I mention that I took Hope to the out of hours surgery on Saturday? She had a high temperature despite calpol, and I suspected an ear infection because she seemed to be rubbing her ear. Anyway, the doctor checked her over and said he didn't think she had any infection, but probably a virus.
I've been concerned the past few days because hope has been VERY sleepy (which is not like her at all), and she hasn't been very alert or noisy or smiley. I was beggining to wonder if this was the onset of her progressive disease.
This evening I had her on her playmat, all of a sudden I noticed a pool of fluid on the mat, coming from her ear. Omg, I paniced. Brain fluid? I rang the doctor immediately, who said to bring her straight in. She has a very bad ear infection (thankfully). He said it was so bad, he couldn't even see in her ear because of all the 'gunk'. I did question him that it wasn't something related to her other many issues, but he was certain it's a nasty infection. Hope is now on amoxicillin. He wants to see her again in a week. Poor Plonkey. No wonder she hasn't been herself. Hopefully she will be again very soon.
Today we went back to Koalas. Though last time I went and thought it wasn't for us, I wanted to give it a chance. I'm glad we did. Even though H pretty much slept through it, I spoke to a couple of the mums today and they were really nice.
We also had a meeting today with the lady who runs the centre. Hope is now on the waiting list for portage (a special needs teacher will come and see her at home once a week to work on things). I have another meeting with this lady next week about claiming disability living allowance. I've been reluctant to claim, partially denial, and partially because I see my role as hope's mum isn't one that I need to get paid for. However, as was pointed out to me, I am doing more for hope than one would normally.
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.