Well, so far, so good, I am pleased to report we are still out of hospital and only visiting as an outpatient. My workload has not eased however as now is the time to fight all the other battles that have been put on hold for a while. Examples of these included sorting out a proper bed for her which will enable me to do her IVs without breaking my back and which will keep Daisy safe when she thrashes around at night in pain. We have had a few false starts with our wonderful Primary Care Trust on this one and two, totally unsuitable, beds have been provided already. The third one will arrive hopefully in around 6 weeks so I am really hoping it is third time lucky. In the meantime we are improvising, my wonderful friend's wonderful carpenter husband has adapted a second hand cot bed with higher legs and a door which opens outwards - thank goodness for friends like this as I really do not know how I would have coped with an ordinary cot in the meantime.
Another battle is to get Daisy the support she needs in school. Prior to her massive increase in medical needs (when her needs were still very significant) Daisy had a one to one learning support assistant for 4 hours of the school day. We now have to demonstrate to the education authority why she needs a full time assistant - it's patently obvious, but unfortunately there are massive bureaucratic hoops to jump through to achieve this so in the meantime she is back at school, but only for 4 hours a day.
Daisy is loving being back at school. It is a specialist school for children with visual impairments in the most wonderful location between Wimbledon Common and the All England Lawn Tennis Club. The facilities and staff are outstanding and even in just a few days back in school Daisy is coming on in leaps and bounds. The staff are so happy to have her back, everyone seems to know her there and I just hope that she can have a really long run of time back at school so that she can continue progressing.
I have my usual battles with the medical issues, we now have a date for her rheumatology appointment, this is at the end of October. I am still trying to get a date and plan for her surgery on her feet. These are getting worse and worse, she can no longer stand up without wearing her foot splints and even with these on she is unsteady and falls easily. I am so concerned that this surgery needs to happen very soon as I don't want her to lose the ability to walk. We are waiting for a date to go back to GOS for the TPN/Nutrition Clinic. Despite pushing up the volume of TPN Daisy is receiving she is continuing to lose weight and I am trying not to worry too much but you can't help wondering if there is a more sinister reason behind why this is happening...
Anyway, the next couple of days are an opportunity for me to put all of these worries behind me. Tonight I am staying at Chase Hospice with Daisy, tomorrow Andy and I are going to Wembley Stadium to see Coldplay as our wedding anniversary treat to ourselves. This will be our first night off in a year as Gemma will stay overnight in Chase to do Daisy's TPN. On Saturday, Andy and I will stay in Chase without the other children (mum is looking after them for the weekend). After we have put the TPN up we are going out for Dinner! This will be the first time we have stayed at Chase without the other children and with Daisy now TPN dependent this is the only chance we get to have a proper break. On Sunday mum will drive to Chase with the rest of the children so that we can all enjoy the famous Chase Sunday Lunch as a family.
Being at Chase is giving me a break from all of the stress I deal with on a day to day basis. This service is provided completely free to our family and is funded almost entirely by voluntary donations - without Chase I really don't know how I would cope.
I'm off to bed now, no getting up to Daisy tonight and no school run tomorrow - bliss!!!!!
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 (85) costello syndrome (44) disability (32) aspergers (19) Great Ormond Street (18) 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)