A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Tuesday, 3 November 2009
A lovely community nurse, the rainbow trust and Helen house
Including this week,for the next 3 weeks, we have 3 apppointments with various specialists and professionals involved in Hope's care. She has so many people looking out for her; Her wonderful paediatric neurologist-dr ch The not so nice specialist neurologist, Her community epilepsy nurse 'j' Her lovely nursery nurse Audiologist Opthalmologist Visual impairment worker (lovely too) Occupational therapist Physio therapist Play worker Dietician The lady that coordinates koalas and is chairing Hope's 'round the child ' meeting (really wonderful lady) Geneticist I'm sure I've missed a couple, but also know there are about to be at least 3 others who are shortly going to become involved.
I realise how lucky we are in the uk with our national health service. I know people moan, but in the whole, I've been impressed. Can u imagine having to go through insurance companies to get all this care approved?
All that said, all of these appointments create a lot of hecticness to our already hectic lives. Chris and I are keen that Jordan and max (to the best of our abilities) are not having to make sacrifices, so after school and weekends are busy with various activites. Mainly, these appointments happen during school days, but combine these with the fact Hope is throughly spoilt (rightly so), and because of her seizures needs constant supervision....something has gotta give; firstly this tends to be housework,secondly we have more takeaways than we should, but leaves chris and I utterly shattered. There aren't even days we can think 'at least we can have a lay in on ....day' because of the demands of max playing football.
Yesterday I well and truley did my back in. I can barely walk, nevermind lift Hope. With Chris at work and the Kids at school, today has been very difficult, and Hope has spent the whole day on the sofa, with me tending to all her needs from there.
Today we had a visit from Hope's community epilepsy nurse. We've met her briefly twice now, so today was good. She's really easy to talk to, caring and supportive . We discussed Hope's prognosis, various professionals, ketogenic diet, medicines etc. Then it came to our 'support network' ....
There are a couple of people I can call on when we have a crisis, but they have their own kids, work etc. There are people who say 'if there's anything I can do ...' but a) I don't like to ask because b) I often think people just say it to ease their consciences :0/
With this in mind, 'j' told me about the rainbow trust. Basically they are the extra pair of hands we need. A 24 hour service, someone to watch the kids in the event of an ambulance needed in the night, someone to collect the kids from school if it clashes with an appointment, someone to come and watch Hope whilst I cook or do jobs. J certainly is efficient, and so are the rainbow trust. I had a call from them this afternoon, and I'm meeting with someone next week. I looked at their websitehttp://www.rainbowtrust.org.uk/ This is what they offer:
Rainbow Trust Children's Charity provides practical and emotional support to families who have a child with a life threatening or terminal illness. Rainbow Trust's Family Support Workers join the family in their own home and are there to provide practical support. We are contactable 24 hours a day for families in crisis from diagnosis, through treatment and even after bereavement'. Though, this sounds like just what we need,I wish so much that we didn't fit into those they help :0(
J also discussed respite. Though there are services that mean I could get a break by having Hope looked after, anyone that knows me or follow this blog will know that I don't leave Hope. AT ALL! However, she told me about respite care for the whole family. That's slightly more appealing. Though I'm not sure it will be for us . Not for now snyway. She's gonna take me to see it in the new year. Here's the link http://www.helenanddouglas.org.uk/
And here's what they offer: Helen & Douglas House is a registered charity providing respite and end of life care for children and young adults with life-shortening conditions, as well as support and friendship for the whole family. The two hospice houses are bright, vibrant and positive places, where the emphasis is on living life to the full, even when that life may be short.'
Again, I wish we didn't qualify :0(
This place was on tv sometime after Sam died. I remember seeing a child and their family recieving 'end of life care'. I remember thinking how lovely it was, how I wished we'd had that option with Sam. They had a 'cold' bedroom, where the parents stayed with the child once the child had passed :0( that made me cry :0( Never did I imagine I might one day be there :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.