A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Wednesday, 16 December 2009
A quick belated update
I have been meaning to update about the zillions of appointments we've had recently but it's a mamoth task, so I'll just give u the highlights...
We met with the geneticist, who certainly gave us food for thought about the whole further investigation malarkey... Though little good is to come from it for Hope, if there is something genetic, there may b implications for j and m in the future or any future children we may have ( though that is not on the cards!).
We've seen dr ch a couple of times. Generally he's been pleased with her health and progress. He's offered to refer us to Great Ormond street. Obviously, this is the best children's hospital in the county, so it's probably the way forward in the new year. He thought Hope had hip dysplasia, but fortunately x-rays proved otherwise. But sadly Hope does now have scoliosis (curvature of the spine). Nothing can be done about this until she's at least 2. She also appears to have some problems with the tendons in her ankles :0(
Hope is now under a speech and Lang specialist ( who I don't like). At this point it's more to do with eating and drinking issues rather than speech. Hope eats well, but refuses to drink anything other than my milk. So we've tried various cups and thickners, but what it boils down to, is it's not that she can't drink from other things, but that she won't!
Hope has been fitted for a 'bee' (a special chair). She looked so grown up in it, and I can't wait for it to come. It's gonna (hopefully) make my life easier because I'll be able to wheel her about with me instead of constantly carrying her around. She's getting a big girl now. 19lbs! I know that's not huge for a ten month old baby, but considering all the issues we had with her weight gain for such a long time, now she's doing just fine :0)
Were still making good use of 'S' the family support worker. Yesterday she came and looked after Hope so I could crack on and do some housework. Crazy as it may sound, I really enjoyed just being able to get on with things knowing Hope was happy and safe.
Then there's been the whole swine flu jab thing... I debated so much whether or not for her to have it, but given that common viruses really knock Hope, and temperatures = seizures, that the institution for mitochodrial disorders recommend the jab, and dr ch did too, I decided to go ahead. The first time I took Hope for it, the nurse asked me if hope was allergic to eggs, which I couldn't be sure of, so we were sent away to try them. There was no allergic reaction to the eggs, so we returned a week later, only for them not to give it to her because she had a respiratory infection. I was beggining to think she wasn't meant to have it done. Third time lucky though, she eventually had it. I have to take her for the second dose tomorrow. Reluctanly though, I might add: you see Hope was miserable after the first jab, and had lots of seizures :0( and since we are now over 2 weeks with no seizures, I hope so much the jab doesn't bring them back.
Tomorrow is a big day! We also have a 'meeting around the child'. This is where all of Hope's specialists and people involved in her care meet to talk about what they're all doing, how Hope is doing, and where next ... A good idea really.
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.