I was affected in a way greater than I realised at the time by the news of David Cameron's son's death this week. Here were two parents given every privelege in life but still facing the struggles Andy and I face week in week out. The frantic dashes to hospital, the endless hospital appointments, the meds, the waiting for results, the hope, the worry...... and for them to leave hospital for one last time without their precious son. I thought back to our worrying time with Daisy a few weeks back and how it could have been the same. The reality is that illness and disability does not discriminate .... so many families like ours face the same challenges week in week out, and yet we manage to get on with life and keep our heads above water. Following Ivan's passing there were lots of interviews with parents of disabled children on the TV and in the papers, over and over the same answers came out - how do you cope? - because there is no other choice, you have to - whether you are the leader of the opposition, the Prime Minister (who himself lives each day with the memory of his first child who died prematurely and the challenges faced by his youngest child who has cystic fibrosis) or whether you are Steph & Andy Nimmo of Wimbledon. Andy goes to work , I go to the hospital, we get on with things, and colleagues, friends, family don't really know what we are facing day by day - apart from that small group of friends we now have who are also facing their own challenges with their own child. In so many ways I feel blessed to have Daisy, suddenly the spotlight was on families of children with disabilities last week and I felt that I was a member of a very special club who could really understand and empathise with the Camerons because there but for the grace of God...........................
We have had our usual share of ups and downs with Daisy since my last post. We were very excited to get her enteral feeding to 28mls an hour, however as always my daughter does not do things by the book and this includes showing us whether or not she is tolerating her feeds. After lulling us into a false sense of security for a week or so, she started to vomit and her tummy bloated up. Hoping that it was just a tummy bug picked up as a result of being able to leave her room, we waited for test results - all of which came back negative for every bug that she may have caught. So we pushed her feed volume back down to 21mls an hour again and have gone back to the drawing board. She seems to be tolerating the lower volume much better confirming that her stomach does not work properly and that she would benefit from jejenal feeding, bypassing her stomach altogether and feeding her directly into the top of her intestine. The procedure to create this new opening will be done at the end of March when she goes back to Rainforest ward at GOS. At the same time she will have an upper and lower endoscopy and we will know if the drug treatments she has been on have worked. I'm really hoping that we will start to make some plans for coming home as well. It will take such a long time to get everything in place that I want the planning to start now otherwise we are in real danger of hitting the summer holidays with Daisy still in hospital.
We were supposed to go to Chase this weekend for our re-booked respite following Daisy's near fatal infection a month ago. This time it was Xanthe's birthday and for the second time I had to meet the children from school and tell them that our break to Chase had been cancelled. This time it was cancelled because there were two emergency admissions for end of life care. Ultimately this is what Chase is all about, we may be in that situation one day so I really did not mind us being cancelled, I'm just focussing on the the next GOS visit. To make things up to Xanthe I rapidly organised a birthday party for her and while Andy sat with Daisy, Jules played at a friend's house and Theo plodded on with his homework I had a nice girly afternoon with Xanthe and her friends at the cinema. Chase has been rebooked for April so I'm really hoping we can actually make it, Christmas seems such a long time ago and we are in dire need of some family time together, the children are fed up of having to be dragged up to the hospital and I'm fed up of trying to divide myself into a million pieces for everyone. Sometimes I just wish I could just wave a magic wand and this would all be over and Daisy would be pottering around the house again just like she used to.......
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)