Was this in the plan????

our life with Daisy - a little girl with a big disease...

Sunday, August 07, 2011

Happy days in Highgate

Visiting Peppa Pig World

Chilling with big sis Xanthe

Posted by Stephanie Nimmo at 12:44 AM

Email This BlogThis!Share to Twitter Share to Facebook

0 comments:

Newer Post Older Post Home

Subscribe to: Post Comments (Atom)

About Me

Stephanie Nimmo: I live in the suburbs of South West London with my husband, Andy and my four delightful (!)children - Theo (14), Xanthe (12), Jules (8) and Daisy (6). Until Daisy's arrival I was a driven, ambitious, marketing professional, working full time and worrying about childcare, global warming and the best route to get to work.... This all changed with the arrival of Daisy. She was born prematurely and soon afterward was diagnosed with a rare genetic condition - Costello Syndrome. Suddenly I was confronted with a situation which was not in the plan, my career went out of the window and I found myself a stay at home mum of a small, vulnerable girl with very complex needs. My life has been turned upside down and I have had to question and and confront so many things about my life and the situation I have found myself in. This blog is about my rollercoaster journey and how I (just about) manage to hold it all together........

View my complete profile

Daisy's Angels Facebook Page

http://www.facebook.com/daisysangels

Follow me on twitter

Follow @stephnimmo

Websites close to my heart

Great Ormond Street Hospital Children's Charity
Daisy's Angels - Facebook Page
About Costello Syndrome
Asperger Syndrome
Caudwell Children
Chase - Daisy's Hospice
Children's Hospices UK
Costello Syndrome Support Group
Daisy's daddy's website
Give Kids The World
PostPals - Putting Smiles on Sick Children's Faces
Singing Hands (Daisy is their No1 Fan!)
The Rainbow Trust

Glossary

Mitrofanoff - a surgical procedure where the appendix is used to create a channel from the bladder to the abdomen for catheterisation
Costello Syndrome - a syndrome caused by a mutation on an oncogene which increases the risk of cancer, heart problems, orthopaedic issues, endocrine issues, neurological issues - the mutation is completely sporadic,the chance of having a child with costello syndrome is 1 in 28,000,000
Gastrostomy - A tube which goes directly into the stomach and can be used for feeding or decompressing the stomach
Jejunostomy - A tube which goes into the very top of the intestines, just after the stomach and which can be used for drip feeding prescription formula and bypassing the stomach
Ileostomy
TPN - Total Parenteral Nutrition. This is where a cocktail of vitamins/minerals & fats are dripped via a pump into a central line avoiding the gastrointestinal system altogether.
HPN - Home Parenteral Nutrition (TPN at home!)
QMHC - Queen Mary's Hospital for Children, Carshalton
Chase - Chase Hospice Care, Daisy's hospice
GI - Gastro intestinal
GOS or GOSH - Great Ormond Street Hospital
IV - intra-venous, into the veins.
Hickman Line - this is a central line into a main vein which goes into the heart and is used to deliver TPN and other medications

Blog Archive

► 2012 (2)
- ► February (1)
  - Not Waving But Drowning
- ► January (1)
  - It could be you

▼ 2011 (24)
- ► December (3)
- ► November (2)
  - Simple Pleasures
  - Small Goals, Big Celebrations
- ► October (2)
  - I wish someone had told me........
  - Is respite a right or a privilege?
- ► September (4)
- ▼ August (2)
  - Happy days in Highgate Visiting Peppa Pig World...
  - Oh my goodness, a whole month has flown by and I h...
- ► July (2)
  - While staying at the hospice Daisy was delighted...
  - Well as always the long gap between posts is becau...
- ► June (1)
  - At long last and 15 weeks after being admitted for...
- ► May (1)
  - I hate rollercoasters, why would anyone pay good m...
- ► April (3)
- ► March (1)
  - So much has happened between the last post and now...
- ► February (1)
  - Well here we are back in our favourite Bloomsbury ...
- ► January (2)
  - I had a phone call at 11pm last night from a journ...
  - Sorry if you thought I had disappeared for a while...

► 2010 (13)
- ► December (1)
  - Six years ago this week I was admitted to hospital...
- ► November (1)
  - Well we lasted six whole weeks out of hospital, an...
- ► October (1)
  - We have reached a big milestone...I was so busy...
- ► September (1)
  - Gosh, it has been so long since I have posted, and...
- ► July (2)
  - Three weeks ago today Daisy had her ileostomy surg...
  - Well it turned out that a weekend in Glastonbury w...
- ► June (2)
  - So much happens between posts, it's no wonder I do...
  - So now it is June and still Daisy has not had her ...
- ► May (2)
  - Dressed as Peter Pan during the celebrations for P...
  - Well guess where we are? Yes that’s right – still ...
- ► April (1)
  - After much soul searching and wishing we could see...
- ► March (1)
  - So we are nearing the end of March and still our ...
- ► January (1)
  - Every day my youngest daughter's capacity to overc...

► 2009 (33)
- ► December (2)
  - Merry Christmas and a Happy New Year ...
  - Well, after much cajoling by family and friends, I...
- ► October (1)
  - Apologies again for not updating more frequently -...
- ► September (1)
  - Well, so far, so good, I am pleased to report we a...
- ► August (2)
  - We lasted 18 days at home before a return to hospi...
  - Daisy has now been home for 2 weeks and, just like...
- ► July (3)
- ► June (3)
  - Same old, same old - Daisy has infection, Daisy re...
  - A friend of mine in a similar situation once descr...
- ► May (4)
- ► April (3)
- ► March (3)
- ► February (4)
- ► January (7)

► 2008 (16)
- ► December (8)
- ► November (8)

BritMums - Leading the Conversation

TOTS 100 - UK Parent Blogs

Followers

Subscribe To

Posts

Posts

Comments

Comments

Follow this blog

Subscribe To

Posts

Posts

Comments

Comments

Total Pageviews

Follow me on twitter

Follow @stephnimmo

S J Nimmo. Picture Window template. Powered by Blogger.