The fundraising post

Sometimes i think we are left to fend for ourselves with Nate. Don't get me wrong the groups and professionals we see are good but act within the remits of their time, experience, and budgets.
No one has ever suggested additional therapies, equipment, resources or things he might just " like". You don't wake up one morning with a complex PMLD and physically disabled child and have a list of... well... "stuff" that he or she might enjoy or benefit from. I feel like i need "Nate training".

 As a parent what your child enjoys doing is usually found in a "trial and error" manner. Some toys are ignored, others inevitably become grubby with love. With Nate this is tricky. At no point would it have occurred to me to pass a chain over his hand, tap it with a spoon, or do equally odd things. People this is "tac pac" http://www.tacpac.co.uk/ and Nate likes it a lot. We only found out about it through watching the nurses at St Oswald's work through a tac pac session with him. This sort of sensory session brings it home how different Nate's needs are, and that no matter how many "baby" age toys you buy, most still aren't suitable.

So you realise your child has very different needs,what do you do? Well i can only say what we did- You read, do google research, and ask for advice. You pick the brains of every professional and SN parent you can. Then, when you have time, you sit down and think about the sort of life you want to give your child. I'll be perfectly honest this didn't really cross my mind the first 2 yrs as we were too busy in and out of hospital. But Nate has been quite well lately and we want to do as much as we can for him.

Through SN parent recommendations we discovered...
tomcat trikes http://www.tomcatspecialneeds.co.uk/
and The Brainwave Centre http://www.brainwave.org.uk/
Through sensory groups we found Nate's eyesight had improved and he started to really respond to lights ( optic fibres, bubble tubes, sparklely light boxes). Thus was formed the aims of our current fund raising.

Through kind donations we had already funded a projector and light tent, a padded playmat, his p pod and his lycra DMO suit. Now on the list was therapy at brainwave, a trike allowing him fun outside on a supportive and custom built trike, and turning our dining room into a sensory room.

It is VERY clear that we have many people who care about Nate and want to help him and us.
All i can say is a huge thanks to all of you because through fund raising yourselves, taking part in events, sponsorship, or liking and sharing Nate's fund raising page you are helping to change Nate's life for the better. Nate now has enough money to fund those things above. Additional funds will be used for further therapy and equipment.

So today Team Nate have been....................................


UP HERE



ABSEILING DOWN



THE VERMONT

Being undiagnosed. My post for undiagnosed children's awareness day April 13th

In the beginning it was clear that something was wrong.

Normal babies don't lie there unmoving, unable to feed, eyes shut, and not making a sound. I managed to convince myself he was "stunned" , but then watched as he was whisked away from me to SCBU and then suddenly a list of his "unusual features" appeared. We were told they suspected something seriously genetically "wrong" and had a horrendous 3 day wait in hospital before a geneticist was available.

During those few days time seemed to slow right down. i did that really bad thing of trying to get on the internet with poor signal in the hospital to google his symptoms. We quizzed drs who remained evasive and I played " would I rather" ( see a previous post). When tuesday finally came I expected the geneticist to walk in and tell me the name of the syndrome my son had. I knew this would be hard to deal with and i was terrified, but i felt we would be able to move forward and start to make plans for our life with our son. However i soon found out that this was not the way diagnoses are made. I was shocked to see my tiny baby under extensive scrutiny as the geneticist searched for "clues" to his condition. Pictures were taken, tests were ordered and we were told she was confident of a diagnosis, but wouldn't say what until the tests were back. A cornered paediatrician eventually let slip the condition they were testing for and google provided answers to questions they wouldn't give. This was the first of many syndromes with short life expectancies considered as a possible diagnosis for Nate. The first 6 months were full of ultrasounds, x rays, MRIs , blood tests and metabolic tests as they continued their search for " clues". At some point we stopped living on tenterhooks waiting for test results and a diagnosis and started to get on with our family life. Actually I know at which point it was, it was after a 13week wait on DNA sent to Holland to confirm a "definite" diagnosis and the stress and worry of those weeks in the run up to what might have been his only Christmas, and then for the tests to be negative....

The testing has petered out now as  the professionals run out of ideas. The geneticist eyes him hopefully when we see her, asking after any new symptoms she can use in her quest to find a diagnosis. We want to know which condition my son has for several reasons; to inform us and his team of caregivers and professionals, to shine a light on what to expect in the future, and we want to be prepared for any nasty surprises, or maybe given a bit of hope. It would be lovely to be told something good for a change.

The fact remains that whatever Nate has is so incredibly rare we are unlikely to get a diagnosis. When people ask "what are they doing next to find out what he has?" i have to try and explain that he's had every test available including a full chromosome micro array which can show small changes on a chromosomal level. So until any new symptoms/pointers/signs/clues/issues" arise ( and I hope they don't ) Nate will remain "undiagnosed".


So what are we doing? We are living our lives.

N.B - the " list"
Unusual head shape, wide set eyes, flat nasal bridge, pin prick dimple between eyes, small nose, down turned mouth, low set rotated ears, high arched palate, core hypotonia, inadequate nighttime breathing ( shallow breathing and central and obstructive sleep apnoea- requires ventilation), ASD ( resolved), lump in mouth ( removed), contractures of fingers and excess skin between fingers, undescended testes, webbed toe. 50/50 tube fed vs oral feeding, reflux and air in stomach issues, stomach high up in the wrong place, visual impairment, possible auditory processing problems, non verbal, non mobile and has PMLD.