I want to welcome all the new likers to our Blog.
We are slightly dysfunctional but i think that works for us.
my long suffering husband J and i have been together for 17 years so far.
we have three children, J, O and F. They are currently 15, 12 and 6. I am am also a part time specialist nurse for people that are tube fed. .
All this is in addition to all the nursing experience that i get at home while juggling the children. all three children have additional needs that require specialist care and are the reason that i eventually took the brave step into nursing.
It was while changing a feeding tube on the floor in a restaurant after it has been pulled out that i realised that i wasn't all that squeamish actually.
We spend a lot of home time doing medical care, visiting hospitals and trying to stay out of them.
We have a family condition called Ehlers Danlos syndrome type 3 that affects us all in our joints.This is myself as well as the children. This ranges from joint pain to full on joint dislocations, dysphagia, gut problems etc.
All three children have needed fundoplication surgery for severe gastroesophageal reflux. All three have been tube fed for significant amounts of time. J has his feeding tube for 13 years and it was just removed a couple of months ago O was fed for 10 years and her tube was removed 2 years ago now. J also has ADHD and Anxiety, O has a habit of fainting and has nose bleed but its F that brought us here.
F is our little mystery. He has a lot of different issues but no over all name for his problems. He has a cyst that has moved his entire left temporal lobe in his brain, he has hypotonia, he has hyper mobility, he has severe reflux that hasn't been resolved by the fundoplication surgery as his has herniated back into his oesophagus, he has gut dysmotility problems, he is jejunostomy fed, he has a mild global development delay, He has some kind of MAST cell activation disorder, He just has allergic reactions to anything. He has a deletion on chromosome 14q21.2, he has small intestinal bacterial overgrowth and other little quirks.
we or especially i am also a huge Geek. A title worn with much pride. I love doctor who, Harry potter, elementary, red dwarf and also Sherlock.
I try very hard to pass this onto my children much to their embarrassment sometimes.
Although F is proving to be a Harry Potter buff even at the age of 6. It's makes me so proud when he jumps about shouting spells. He is becoming more and more obsessed, plays it at school with his friends. loves to dress up and wants to go to the harry potter studios for every birthday.
The best thing is that so far he only thinks there are two books and films even though he has been to the studios, his delay means he hasn't spoiler-ed himself. it means that as he grows up he will be able to discover more and more too just like i did.
i hope that i will post regularly on here for you all to read but feel free to join in, comment and let us know where you are from, ask questioned. Share you favorite Geeky quotes, pictures stories.
thank you reading x