For one reason or another, we aren't exactly sending away the queues of helpful relatives offering us help. With our lives being such as they are (a baby that needs 24/7 supervision, who only ever 'cat naps', endless streams of medical appointments, plus 2 other children who also have many of their own needs, chris and I were feeling rather stretched to say the least. So, we've got an extra person :0) Just what we needed. We had the meeting with 'B' from the rainbow trust... He assessed our needs, and offered us their services. He bought 's' with him, who throughout played with hope. When 'b' said we'd be allocated our own family support worker, I hoped it would b s. It is :0) She started straight away. She stayed after 'b' left. It's only been 2 weeks since our first meet, but I can say she really is a welcome addition to our family. She's already won the kids over. And max is not easily won over. At all.
S will watch Hope for me, so that I can do housework. She'll come/take us to appointments, or pick the kids up from school when H and I are at an Appointment (it's not ideal pulling them out of school, but that's what I've had to do so far). The service is there as and when we need it. 24/7! Her car is loaded with baking goodies and art and craft things, so the kids enjoy her looking after them. What's more; she's a paediatric nurse who has previously worked in a childrens' hospice. Oh, and ...she really is lovely!
I guess the only negative, is the reasons we qualify :0(
We've had 5 appointments this week. 3 last week. 3 again next week lol. Will update on all of those when I have the energy!!!
Children in need tonight! Will be watching it from a different perspective tonight. Jordan knitted a pudsey bear. I sponsered her to. I made a donation yesterday, but Knowing that my donation is just a drop in the ocean, and that Hope will benefit from the charities children in need fund.
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(
Halloween 07, I trudged the streets with Jordan and Max. I was pregnant with Sam. That night we discussed how next year we'd dress Sam up as a pumpkin. Of course we didn't get to, and as we walked the familiar streets on Halloween 08, we missed having our lil pumpkin. But we had hope, that the following year, we would get to dress Hope as one. Even the kids had happy tears when we dressed Hope up this year.
Of course Sammy was not forgotten; we bought him lots of goodies (as we did last year). Here's Hope looking after Sam's vampire teddy and balloon at Sam's garden.
And here's Sam's spooked up garden. Some might think it a little bad taste (ok perhaps the skeleton is, but the kids chose that, and i wasn't about to go into it with them). Perhaps it's also a little wierd to take photos of my kids at the cemetary...I wish there was some other way I could get a photo of all my kids together :O(
Isn't she just lush? I made the mittens to keep her handies warm. I made them quite big, and HOPE she'll get to wear them next year too! Mind you, think she'll be a witch next year. We saw some really cute outfits, and Jordan likes the idea of them dressing the same.
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.