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
Visual impairment worker (lovely too)
Occupational therapist
Physio therapist
Play worker
The lady that coordinates koalas and is chairing Hope's 'round the child ' meeting (really wonderful lady)
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

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(




  1. Big hugs caroline :O( i think sometimes i chose to forget, kinda put it to the back of my mind how poorly Hope is.
    Shes so happy and fiesty it seems it cant be true :O(
    But reading about hospices and meeting the criteria for rainbow trust help, really brings it home.

    I also saw a tv program a year or 2 back about somewhere similar to the helen douglas house and it did seem a lot nicer than hospital and a good place for older siblings to play and talk things over with others etc.

    On a brighter a note its great all the support and help you are all receiveing and your so right about the NHS we all moan but are very lucky to have it.

    And as for j and m your doing a great job keeping them them in all their after school clubs etc and they are no way suffering from lack of your time or attention, i wonder how you do it all to be honest :O)

    Just one last thing never feel you cant ask, i`ll always help if i can but i know you know that ;O) xxx

  2. um..yeah, I can imagine dealing with Insurance companies to get services. Its not fun! You ARE lucky!

    Respite is not all that bad...you don't have to leave. We use it as an extra set of hands. Holding the baby while I fold laundry, or carrying the diaper bag to appointments. With the right person, it can be a good thing.

    You are a great mom...and Hope is a fighter who has many good surprises up her sleeve!

    Oh, and to answer your question on my blog, Kendall has normal levels of Lactic Acid in her blood. Her Ketoacidosis was caused by the Diabetes. But I always wait for the Lactic Acid levels on pins and needles...

  3. Hi Caroline. Thanks for introducing yourself and looking at Noah's blog. Oh my goodness! Hope is precious! What a sweetheart! Thanks for reaching out to us. It always helps to know there are others going through this too. Helps get me through the day. :)

  4. Hi Matthews family

    Thanx for the update and the yummy pictures. Pleased that you are being offered support and help. As you know ans someone else already said, you don't have to leave Hope in order to get the help. Even with James and his Carer I get extra hours in the school Summer hols and sometimes go out with them - it just helps to have another pair of hands and eyes.
    the Douglas& Helen house Hospice sounds as good as those places can ever be. I know you are like me and prefer to have all information and research. But now you have done it you can try to put it out of your mind (I hope).
    Lots of love and hugs to you all.
    Rachel & menfolk XXXXXX

  5. awww Caroline, ive just updated myself with Hopes news and its great that you have such a big support unit, i dont know what you would do if all this care wasnt available, Hope really is getting the best care all round. I take my hat off to you and all the hard work you are doing raising your children and keeping a house, you're a star xxxxx

    love Nat xxxx