TODAY’S THE DAY!

So the journey continues!!!

We now have a child with magic ears. Nelson had his Cochlear implant surgery on 14th June 2017, to say it was the longest day of our life would be spot on.

We arrived at St Thomas’s with the dawn and found our self’s in the usual coffee shop having a some what nervy flat white.

We slowly walked across the empty hospital to the Evelina and checked ourselves in to the ward. A few children with their parents just waking up and getting ready for discharge. We had a few visits from the doctors and nurses and was made to feel as much at ease as possible. We then got told that Nelson would likely not go down that side of lunch time and they gave us a time of 13:00, this for a very hungry 1 year old was not music to our ears and the challenge of keeping him entertained began. Luckily Nelson is a bit like me and took it all in his stride  and was very laid back.

Before we new it the chimes of Big Ben sounded and it  was time  to take our precious little man in to the unknown. The young nurse was chatty on the walk to theater, trying to keep our minds off what was about to happen. I held Nelson as the small face mask was put on and he fell in to a deep sleep. It was hard the first time and the 2nd time seemed a million times worse, a quick kiss on the head and we left him in the very safe hands of the doctors.

One of the best bits of advice we took was to get out of the hospital whilst Nelson was having his surgery. We had a visit from an extremely kind and lovely lady called Alison, who has two children with CIs and lives in London. She took time out of her day to come and see us and bring us what can only be described as  the best survival pack ever, it had chocolate, crisps, coffee, GIN in a tin, cup cakes and much more. All of this from a lady that we have never met before but have something in common, we both have a deaf child or children. This act of kindness was a brilliant way to kill some time and we had a good chat whilst waking Alison back to Vauxhal station.

We sat in the sun outside the hospital and counted the chimes from Big Ben as each hour passed us by. We then had a phone call from Harry the surgeon telling us that Nelson was out and being patched up and we could make our way back to the ward, we almost skipped back knowing that we would soon have our boy back.

Becky soon had a very swollen but still smiling Nelson in her arms. The time soon came for me to leave the hospital as they only allow one parent to stay over night. I had checked in the the Days Hotel about five minuets down the road and was simple but did the job, i sat in the bar and had a few beers before getting some sleep after what was a very long day.

 

I was back at the hospital at 7am the following morning and was met by a very tired wife and a happy ish baby. Beck had had a night of it as Nelson did not want to settle and was having medicine every 3-4 hours.

We got discharged at 13:00 and made our way home.

The next day we had letters from the hospital with dates for switch on and mapping appointments, activation date was set as the 20th July.

Switch on and more to follow!!!

 

 

 

13 Reasons to Sign to Your Hard of Hearing or Cochlear Implanted Child

Really interesting it or reading this.

On Deafness

When we implanted our profoundly deaf two-year-old son Micah with cochlear implants, we gave little thought to American Sign Language or Deaf Culture. We were a hearing family, following the council of our audiologists, and under enormous pressure, we made the best decision we could with the information we had at the time. Micah received the $50,000 bilateral implant surgery and the $18,000 implants. He participated in expensive speech, auditory and oral therapies, but despite our time, efforts, and financial investment, he hated hearing. Sound was like an itchy sweater he refused to wear. He fought us tooth and nail, literally biting and kicking until he and I were both in tears. As you can guess, he made few speech gains.

Believing the implants would help him develop language, we had put all of our eggs in one basket, and by age five, Micah had a significant language delay. As…

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WHAT IS A COCHLEA IMPLANT?

What is a cochlea implant? Well until 9 month ago when we found out of son Nelson was profoundly Deaf  I didn’t have a clue.

Now I feel like i have a tiny bit   of an insight to this amazing piece of machinery, when I say insight I mean it, I am not claiming to be an expert. They seem to me to be a bit like mobile phones, new software, programmes and accessory’s always hitting the market.

So what do I actually know?   A cochlear implant is a surgically implanted electronic device that gives a sense of sound to someone that has a severe or profound hearing loss. Nelson fits in to the profound zone of hearing loss; this qualifies him for the procedure. A cochlear implant is not a cure for deafness, but can act as substitute which stimulates the cochlea to produce sound.

How does a cochlea implant work? Well I’m still not 100% sure  myself, one thing I can say is it is extremely clever and the first example of one stretches back 60 years. Below is a link that should work to one of the leading manufacturers Advanced Bionics and how they work.  www.advancedbionics.com

Clever or what??

To this date I have never actually met anyone with a cochlear implant, but being on social media you get a chance to follow and talk with lots of people, my Twitter and Instagram pages are both heavily driven to spreading awareness of deafness in children so finding examples of success stories involving cochlea implants is not hard at all, to name but a few,

@lucie_xoxo and her son Harry

Elsonhq and her son Henry on Instagram

Alipalipanju and her two Harriet & Will on Instagram

:Above is a picture shows a Cochlea implant

So all being well our son Nelson will be fitted with this amazing bit of kit just before or just after he turns ONE. Between now and then I am  sure we will have lots of worries, sleepless nights and tears but in just a few month Nelson may well just be able to process sound for the first time!

Please don’t forget to follow Nelsons and our progress on

Twitter: @daddyknott11

Instagram:  Daddy Knott

You Tube: Daddy Knott

The Long and Winding Road!

 

Once again please excuse and grammatical and spelling errors!

So we are well in to our journey to get Nelson implanted with Cochlear implants… The road has been hard work, and at times not much fun.

We will be visiting St Thomas’s hospital in London a lot for the foreseeable future, we have been told good things about the ENT (ear nose and throat) department, but seeing is believing and to-date we have not been disappointed.

Our first trip was on the 6th January and a very early 5am start to get up to London for a 10:00 appointment, this meant getting on a very busy commuter train from Gillingham to Waterloo east. To say the train was busy would be an understatement; by the time the train had pulled out of Gravesend station not a spare seat was to be found. The service that runs from Gillingham to Waterloo east is an old style of train, this means push chairs do not fit down the walk way this limiting us to four places to sit with Nelson in his pushchair, something that would cause us a few problems on a later trip.

Our First visit included some testing with an audiologist and a speech and language therapist, both very good with Nelson and explaining how our visits will pan out. Rachael the audiologist explained that they could fit us on to a group session that day to talk more about the implants themselves and the operation, we gratefully accepted the invite and very interesting it was.

Picture: Nelson in the testing chair, taking it all in his stride.

The 2nd trip 13th February 2017 is to date the worst and longest trip we have had, we were able to get a slightly later train giving us more space and not have people standing over us. We had two scheduled appointments this day and one included meeting the surgeon  that would be doing Nelsons procedure if eligible.

Nelson again found himself in the blue chair doing some more testing, the audiologist plays sound and vibrations in to his ear and try to train him to turn to the sound/vibrations. We have established that Nelson cannot hear or react to sounds up to 110dB the equivalent of a Helicopter engine. We got informed that the surgeon who we had an appointment with had got caught up in surgery and would not be able to make it meet us, this was a bit of a disappointment but a phone call to him that day did help.

 

Due to the lack of a second appointment we were invited to take Nelson for his Pre op assessment, this would be checks to see that he would be OK to have a general antithetic. Nelson had his blood pressure taken and some swabs to check for any infections, they signed him off with a full bill of health.

We left St Thomas’s a bit later than expected and this reflected on the amount of people boarding the trains.  I was unable to find a train time for the service to Gillingham, we then learnt that the trains had been delayed and advised to get on a train to Gravesend and change to get home we knew that this could be a nightmare journey. This was the case as we  boarded an already packed train with no seats and a now grumpy Nelson, in this day and age you would think someone would give up a seat for a lady (Mrs K) holding a small child???? Nope no one battered an eyelid. A short wait at Gravesend and we made it home, all three of us utterly shattered.

The 3rd and smoothest appointment to date 13th March2017, included a smooth train journey up to London and being a bit clever a split ticketing strategy that saved some money. We then found our self’s enjoying breakfast in Starbucks.

A short appointment with some testing in the blue chair and some new hearing aid moulds and were back on our way home, we arrived home shortly after 2pm and cracked open a bottle on the new decking.

Our latest appointment fell on the 20th March just two days before the terrible terror attacks on Westminster bridge and outside the houses of parliament.

The day would entail three appointments, one with the Audiologist; yep you guessed it back in the blue chair for some testing. We also got given some more powerful hearing aids, and asked to keep an eye out for reactions to sound, to-date we have not noticed any kind of reaction at all.

We then had a play session with the speech and language therapist, this was really just to see how he reacted to Becky and myself whilst playing and sounds that he makes when he is relaxed. Everyone we have seen seems really happy with the way Nelson is heading and can’t speak highly enough of him.

Next up we had met the lovely Harry Powell the surgeon that will be doing the Operation, both I and Becky could not be happier with the way he came across and feel totally at ease with him.

We now have our next appointment on the 4th April for the MRI scan, keep your eye out for the next blog.

Remember to follow us on: Twitter @Daddyknott11  Instagram  DaddyKnott and on You Tube Daddy Knott  

This is us!!!

Hi…

My name is James Knott and this is the first time i have ever done a blog so could be a car crash but i am  going to give it a go. A quick heads up my spelling is not the best and same with the grammar, please try and stick with it.

So i am mainly going to be blogging about day to day stuff in our very busy household that consists of two kids under the age of three and two moody teenagers. The break down is.

• Nelson James Knott Born 9th June 2016
• Prudence Wherry Knott Born 26th July 2014
• Libby Edwards Born 25th December 2000
• Charlie Edwards Born 1st October 1998

Charlie and Libby are both from a previous marriage on Becky’s side, but have been a big part of my life for the last 7 and a bit years and I look at them as my own.

Becky and i got married 4 years ago this September and Prudence was born the following summer, we didn’t waist much time and Nelson followed.

Nelson was born profoundly deaf and this is my inspiration for setting up my Twitter, Instagram, You Tube and now a blog. It is a talking point having a Deaf son and i want to talk about it. In upcoming blog posts I will tell the story of him being born and how we learnt that he was Deaf and our journey so far, if has been filled with ups and downs tears and laughter.

For now that is all you are getting. This is us! hope you enjoy the journey and i welcome any comments positive or negative .

From left to Right: Me,Becky,Charlie,Libby,Prudence,Nelson..    

 

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