Welcome to any new followers and readers.

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

Undiagnosed and Invisible. Written in 2013.

Did you know that it is possible to be sick and have a list of medical issues as long as your arm and yet still no one can tell you what the problem is.

Did you also know that it is possible to look absolutely fine while still having all of these problems.

F is a SWAN (syndrome without a name) i didn't realise that this was even a thing until i had him and was thrown into this confusing complicated world of fighting for everything.

i'm nearly a nurse and believe in medical science and that people get sick, get diagnosed and get treated. i never thought that their were families out there fighting to get reconised. i see people every day coming through the hospital being treated for problems that has symptoms similar to F's yet we cant get help because we don't know what to treat.

Imagine not being able to tell people what is wrong with your child or why they need to be tube fed or sign makaton.

Imagine having to defend your actions and your childs treatment because your child looks fine.

Did you know that if a child looks fine and has no diagnosis then people presume they are fine and it is the parents fault/problem/issue.

Seems unbelievable in this day and age that such ignorance exists but it happens all the time, sometimes it is heartbreaking like last week after a week in hospital, lots of trouble with F's tummy and tube, lack of sleep and him being so ill  a member of staff at his nursery made an off the cuff remark about well he doesn't need the tube anyway. Followed by the phrase "he looks fine".

Hmmm what he looks like has no bearing of whether his insides work or not but thanks for the opinion that i didnt ask for or need.

Even in hospital it raises eyebrows.

Why is he jejunostomy fed? we dont know.
Why is he so low toned? we dont know
Why is his speech delayed? we dont know
Why does he need a supported chair? we dont know why just because he is low toned and no we dont know why.

then we lead on to filling out forms or answering hospital questions.
What condition does your child have?

Seens like an easy question to answer but when you don't have a diagnosis, all you have are a list of little problems that don't count as a diagnosis and means that you don't get the help that you receive.

Each specialist that you see only deals with the one little problem that you see them for and because they have no underlying diagnosis to work with no one works with the other so each person sees their problem as no big deal and it is left to us, Finleys parents to push for help.

F has two issues that effect his posture and ability to sit and walk. he is both hyper mobile and has hypotonia, this means that his joints are loose and bend more than they should and also he is floppier that normal as his muscles are weaker too.

Together this means that he has a lot of trouble especially when tired to even sit up. those who know him will notice that he can walk and play and sit up ok but once tired he has trouble even holding his head up as he gets so floppy.

This happens much more than it should for a child who is nearly 3 yrs old and leaves him floppy like a newborn and in pain from overdoing it.

Then because we see a different physio for each problem only one problem is taken into consideration at once so we are just left to deal with it and have had to get help from a charity to fund a specialist pushchair and car seat that can deal with F when he is floppy.

If he had a diagnosis of cerebral palsy or something similar he would have a team of people that all address his postural needs and making sure that he was dealt with but because F is just seen as low toned by his physio it isn't felt that he needs a team around him.

Confusing, tell me about it, we feel let down and i struggle with the feelings of being helpless, i also suffer with a confidence crisis that surely if he has a serious problem then they would know what it is so therefore i must be worrying over nothing. This is an awful feeling and one that is rubbish. the hospital see what we see and they are trying to find out the answers to some questions.

This is just something that gets to me every now and then, usually when i have had questions on what is wrong with F,

Some days i feel like typing all his problems into Google and seeing what it comes up with but that doesn't help anyone, Dr Google is one scary doctor.

For now i will go back to what i do every day, i chase doctors and specialists. 20 to be exact. 20 different people involved with my little one and try and get them to talk to each other.

We have to get ready for F to go to school in September so that is more meetings on top of several appointments a week with all of these people to look at their part of F

and hope that one day soon we will get an answer to what is wrong.

Whether we like it or not.