Deaf Kids Rock | 2 Years of Hearing

When I fell pregnant with Harry, I was so naïve.  I had worries of course but they were for all the “normal” things, would he have all his limbs, would he even make it all the way to 9 months gestation.  I never ever ever considered that my baby would be born without something I consider to be one of the ultimate senses.  I could not have guessed in a million years that my son would be born profoundly deaf.

Being told something as significant as that can really shatter a person.  We felt broken, I felt broken.  I was absolutely and utterly terrified for what Harry’s future would hold.  Would he have a fulfilled life, would he struggle at school and the ultimate question for me, would he ever hear me tell him I love him. 

I spent an entire 42 weeks growing this little person inside my tummy, talking to him and telling him all of our hopes and dreams and the thought that he didn’t and possibly wouldn’t ever hear any of that split my heart right down the middle. 

However, we had to pull ourselves together and focus on our boy wholeheartedly and without fear.  We had to make decisions around surgery for Harry that could have put his life at risk, a decision that meant he would either hear or he wouldn’t.

Little did I know that Harry being born without hearing would be one of the most incredible experiences we could have ever endured.  It completely shaped our lives as a team of three into something really quite special. 

Harry really is like any other three year old lad.  He is a boys boy, he’s happiest when surrounded by cars, trucks and dinosaurs.  He is confident, loud, stroppy and completely pushes all of the buttons.  But he is chatting away more and more every single day and each time he comes out with a new word or phrase my face completely lights up and I couldn’t smile any wider.  The feeling of not knowing if my baby would ever hear, to him “blessing” me after I sneeze really is like no other feeling I have ever experienced.

It sounds so cliché but he really does light up something inside of everyone he meets with his charm and his baby blues.  I never look at him and feel sad or sorry that he is deaf, or has to wear equipment on his head to be able to hear.  I look at him and feel inspired, empowered and most of all insanely proud.

People like my son Harry show the world that there are miracles.

I’m forever grateful to be your Mama little bug, Happy 2nd Hearing Birthday  x

A Year of Sound | Harry's 1st Hearing Birthday

To my darling Harry,

Today, 4th of March 2016 marks your very first "hearing birthday" and my my, how you have changed since that very first sound you heard.  I still can't believe that 11,000 people have watched your special moment at your big "switch on" on YouTube.  One whole year of listening to mummy sing her silly made up songs, telling you off when you're naughty and chatting to you about your day.

I always knew you would be my best friend even before I had met you.  When you were fresh and new in my arms I instantly couldn't imagine a life BH (before Harry) and your colicky cries!  I knew you would be a real mummy's boy always willing to give me an extra kiss and cuddle for another biscuit.  You absolutely adore your daddy too though, he likes to wind you up just before bedtime with play fighting and running up and down the living room like a loony!  

You are saying so so much now, words like "peppa" "more" "biscuit" and "get down" among so many more, and if you don't know the word you will sign what you want to tell us.  You also insist profusely on calling me "Lucie" which I think you are now doing on purpose the more I tell you that I am mummy!!! You love to sing along to Frozen and Paw Patrol (at 5.30 in the morning) and lots of annoying songs from random videos you find on YouTube!  Cute!

You aren't all milk and cookies though.. You have the wildest temper on you that you most definitely get from your Daddy!  You throw a strop at pretty much anything, sometimes resulting in smashing your own head on the floor, throwing things and screeching!  You're 100% a typical two year old and you know how to play us up and get our blood boiling!!

But the best thing about you Harry is that you are so very kind.  Its the sort of kindness you don't always see in little ones your age.  Don't get me wrong you can be one hell of a pickle, you lash out when you're angry and you struggle with sharing but you will always give an upset child your toy or offer them a few of your precious raisins. You hate to see people upset and you do your best to make them smile, usually by giving them the biggest cheesiest grin or a stroke on the shoulder. You very rarely pass up the chance of giving people a smooch and one of your most used words right now is "cuddle".  You are ever so friendly and you'll play with anybody that will have you.  You love to run after the bigger kids, especially your cousins Lily and Issy who dote on your every move!  I'm just waiting for the day that they start to find you annoying and the raging fights begin, but for now I'll relish in the beautiful relationship you have with them.

In a way I feel so lucky the world decided you would be deaf and that I would be the one to take care of you.  I've felt tremendous pain for you, felt so incredibly sad but mostly felt pure happiness and wonder.  You have opened up a whole new horizon for us as a family, we've met people we would never have met, done things we would never have had the opportunity to do and ultimately lead us down a path I never imagined we would be walking.  That path has been really really special and actually pretty fantastic and you have had so many people by your side cheering you on every step of the way. 

Don't be afraid to be different my love, you were born to do something unique and distinctive.  You are going to grow up to do some really amazing things, I can see it in that sparkle in your eyes and I'm so excited to watch it happen.  

Happy First Hearing Birthday Harry, I love you little bug,

Mummy xx

Magic Ears.

I know, I know, it’s been too long.. but I don’t want to bore you with an update of where on earth I have been and why I have been neglecting my blog so much, so let’s just leave it at that and I’ll say hello!

It feels like Harry was given his magic ears SO long ago now but it’s actually only been 6 months since he was implanted and just 5 months since they were switched on!  I can’t remember life before he had hearing, it’s so strange thinking about it and all the sounds he was missing out on.

If you follow us on Instagram you will know that Harry wears his CI’s all the waking hours of the day,  just like normal ears!  A few people have been quite surprised he wears them to things like soft play as they might fall off, get tangled or broken.  But these things are built to withstand “the toddler” and as long as I'm near him to pop them back on when they fall off there is no issue.  That’s the great thing about his magic ears, so far we haven’t really found any boundaries which is one of the most important things about Harry having them, I don’t want him to be unable to do something and I want him to have every opportunity there in front of him ready for him to grasp.  This includes going swimming.. we do get some bizarre looks sometimes when Harry launches himself head first into the water wearing his equipment as the first thing you think of is that they are electrical and surely can’t be submersed in water!  Yet his CI’s are fully waterproof meaning he can splash away till his heart’s content.

I still get so many comments and questions from passers-by, mainly all very positive and nice, wanting to know what on earth his Magic Ears are and how amazing technology is these days!  I have had one incident where I was ready to be rather rude to a fellow parent (male) at a local soft play who decided to sit and stare at Harry’s head with a look of horror!!  I understand that it isn't the “norm” but jeez do you have to make the staring that obvious!!

Hearing wise we couldn't ask for more from H.  He is surpassing all expectations and his audiologists and teachers are over the moon with his progress.  We are noticing more and more everyday how many low volume/frequency sounds he can hear, his favourite sounds are of course music and he really loves his Daddy’s whistling!  Our hearts are warmed every single day with every new noise he hears or sound he makes, however minor or silly it is.  Hearing the word "Mama" never fails to make me beam with pride

We still use Sign language on a daily basis with Harry and it has been one of the most useful things as he can tell me when he is hungry, thirsty, tired, wants more of something or pointing and signing what something is.  He loves to sign rabbit, duck and sea!  I will most definitely be teaching any future children basic signs as I think it’s a huge help in learning to communicate long before the use of speech.  We aren’t expecting any solid words from Harry just yet, hes obviously going to be a little behind at this stage but he’s really trying to copy sounds and mouths the way we say things.  Mama and Dada is enough for now!

Sometimes I completely forget that Harry is deaf which I can only see as a good thing.  He has taught me so much already about the world and how we shouldn't take things such as our senses for granted.  I think he is so beautiful even with his special magic ears, they are just part of who he is now.  I'm so excited for his future and I'm so proud of where we are as a family today

** If anyone is interested Harry is going to be featured in the NDCS (National Deaf Childrens Society) Winter Edition of their magazine – which we are SO excited about!  There will be a whole spread in the mag on his story from the moment we found out he was deaf to this very day.  I think it will also be available online so I will make sure to link it via my social media!

#HelpingHarryHear | A World of New Sounds

It’s been almost 2 weeks since Harry’s Cochlear Implant’s were activated and we are starting to see the first signs of some real reactions from our little chap.  He has been turning a little to loud noises, laughing at some and his babble has become louder and constant!  There is no doubt about it that he is hearing himself more than anything else and spends ages chatting away to himself and shouting at us!

It’s so nice to see and hear because at first we weren’t really seeing any changes in him at all.  The Auditory Implant Centre assure us that Harry is doing so well and the implants are definitely stimulating his auditory nerve providing some hearing for him but they don’t want to shock or scare him so they are being “turned up” very gradually week by week.  We may not see any strong reactions for a couple of months, his brain needs to learn sound as if he was a newborn baby and eventually he will start to realise what he is hearing and where it is coming from.

As for keeping the actual head gear on, he has done amazingly!!  He very rarely touches them or yanks them off they just fall off a lot of the time as the magnet isn’t very strong.  A few people have asked why they can’t just use a stronger magnet in the headpiece and the reason is because it would rub on his delicate skin and become uncomfortable, eventually tearing his scalp so he wouldn’t be able to wear it.  As he grows and gets older his skin will get tougher and the magnet will be changed – we can’t wait for that as it’s a pain in the arse them falling off all the time!!

People tend to immediately stare at him when we have been out and about but this doesn’t bother me in the slightest.  In fact it makes me super proud and its lovely when strangers actually come over and ask what he has on his head rather than just shying away from it uneducated.  I am more than happy to explain what his magic ears are, how they work and how they are changing his little life already! 

Again, I just want to thank each and every one of you who have taken the time to check up on how Haribo is doing, and for your amazing comments on his first reactions video – I will pop it below in case you missed it!  I hope by now you have more of an understanding as to what a Cochlear Implant is and that you can help us to spread the word about them and deaf awareness as a whole

Surgery Advice From One Parent to Another

Harry gowned up and ready to go!

Your child needing to have an operation whether they are a baby or a teenager is completely daunting and a scary thought. It could be the smallest of surgeries but you will still be filled with dread about the day and what it involves.  Just a couple of weeks ago my son Harry had a 6 hour long operation to have a cochlear implant, it was the most terrifying day of our lives but we got through it and surprisingly coped with it a lot better than we imagined we would!  These are the reasons why…

Harry in the recovery area straight after his operation

Knowledge

We knew exactly what was going to happen to Harry before, during and after the surgery and we had tons of information about expectations on the day.  We knew what to expect when he came round from the anaesthetic and there were no shocks or surprises.  Even though he looked such a swollen mess afterwards I knew that is what he would look like so I was prepared for it at least!

Make sure you have been provided absolutely everything you need to know about your childs operation, if you know everything good and bad you will automatically feel more confident about the whole process.  Questions to ask would usually be – how long will it take?  How long will the hospital stay be?  Can I stay with my child? What happens in the operating room? Whats the average recovery time? What extra precautions do I need to take after surgery?

In recovery and having his first sip of water!

Friends and Family

For me, having our family there to support us was so important and I’m so glad they came.  We were able to take it in turns to entertain Harry - who wasn’t allowed to eat or drink anything and didn’t actually go down to theatre until 2.30pm!!  It also helped having them there to talk about something other than the operation and to help take our minds on what was about to happen.  If you have someone who can come along with you to keep you company and help out where possible then take them up on their offer, trust me you will be grateful to have them there!

Back on the ward and downing all the water!

Look After Yourself

We made sure we had a bag jam packed with food and drink as we weren’t sure if we would be able to get access to anything whilst Harry was waiting for his surgery or when he was in recovery. This turned out to be pretty true after surgery, he was of course very clingey and I didn’t really want to leave his side either. Its really important you look after yourself during this time so you can deal with your little one as and when they need you! Things like crisps, biscuits, breakfast bars and energy drinks are good things to pack

Sucking on a biscuit the morning after the night before!

Fresh Air

As I mentioned Harrys surgery was 6 hours long and cochlear implant surgery is often up to 8 hours so once he had gone down to thatre, we actually took ourselves away from the hospital and went for lunch and a browse round the shops before heading back to be near our boy.  It felt really weird leaving him in the hands of surgeons but it did us the world of good to get some fresh air, fill our tummies and it made the time go a lot faster.  By the time we were back in the hospital he was pretty much back in my arms right away.  Even if you just go for a walk outside, get out there and breathe!

Just after having his bandages removed - look at his sticky out ears!

All the Medicine

We made sure we were super stocked up at home with Calpol and Nurofen as well as the antibiotics prescribed after his operation.  Its handy to have pain relief to hand if its really needed, Harry was dosed up for a good 4 or 5 days after his surgery and it was a lifesaver having it all at home ready without us having to drag ourselves to the chemist!

If your little one is due an operation, I wish you all the best and hope my tips help you to “keep calm and carry on” as they say!!

What is a Cochlear Implant?

If you've seen my latest vlog you will have seen that I did a short video about so BIG EXCITING news! Harry finally has a date for his cochlear implant surgery - Tuesday 3rd Feb 2015!  But what even is a cochlear implant...


What is a cochlear implant?!

A cochlear implant is a tiny and very complex electronic device, that can help to provide sound to a person who is profoundly deaf or severely hard-of-hearing (Harry is profoundly deaf which means he has no natural hearing) The implant consists of an internal part that is surgically placed under the skin and attaches to an external part via magnets.

The Cochlear Implant is made up of the following componants:

·         A microphone, which picks up sound from the environment.

·         A speech processor, which selects and arranges sounds picked up by the microphone.

·         A transmitter and receiver/stimulator, which receive signals from the speech processor and convert them into electric impulses.

·         An electrode array, which is a group of electrodes that collects the impulses from the stimulator and sends them to different regions of the auditory nerve.

An implant does not restore normal hearing. Instead, it can give a deaf person a representation of sounds in the environment and help him or her to understand speech.

At present around 10,000 people in the UK are fitted with a cochlear implant and the number is increasing each year.  You see a lot of cochlear implants around where the external part sits behind the ear, much like a hearing aid, however for the first 5 years Harry won’t have the behind the ear part and instead that part will clip onto his clothing.  We mainly chose this option because we felt his ears and head were too small to have that sort of hardware and also because the brand we have gone for is waterproof!

Advanced Bionics Neptune  |  Source

How does a cochlear implant work?

A cochlear implant is VERY different from a hearing aid – which simply amplifies sound so they may be detected by damaged ears. Cochlear implants however bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.

Hearing through a cochlear implant is different from normal hearing and takes time to learn. However, it allows many people to recognize warning signals, understand other sounds in the environment, and enjoy a conversation in person or by telephone

Surgery..

During the operation the surgeon makes an incision behind the ear being treated in order to gain access into the middle ear and cochlear. The operation lasts between 3 and 4 hours per ear - Harry will be having both done at the same time so a mega long operation

The operation is delicate and intricate rather than dangerous because no vital organs are disturbed. There are no serious attendant risks with the operation beyond those normally associated with major surgery

What does the future hold for someone with a cochlear implant?

With advancements in technology and continued follow-up studies with people who already have received implants, researchers are evaluating how cochlear implants might be used for other types of hearing loss.
Other studies are exploring ways to make a cochlear implant convey the sounds of speech more clearly. Researchers also are looking at the potential benefits of pairing a cochlear implant in one ear with either another cochlear implant or a hearing aid in the other ear

So there you go I hope that answers any questions you may have or improves your understanding of what Harry's going to have done! Here's my latest vlog if you fancy seeing a little snippet of Harry and to hear my thoughts and feelings on him undergoing this massive operation..

#helpingharryhear - Where We Are Today..

 

Today we took this little watermelon (daddy thinks he looks like a girl) for a test at the hospital, one we have been quite apprehensive about. The test was to try and see how much Harry is hearing with his hearing aids in. Now up until today we haven't been sure at all as to what our bug has been hearing or reacting to, we know he babbles away to us and himself but weren't too sure if he was startled by sounds or reacting to our voices

It turns out that hearing aids just aren't enough for Haribo and we need to be going down another route to give him sound. Unfortunately they didn't get the responses they were looking for and have decided his hearing loss is more profound than we first thought

We have been reffered to Southampton to start the tests and processes involved in getting Harry a cochlear implant. Our doctors are sure that this will give him an amazing level of hearing so he can gain access to speech, music and all those lovely sounds we take for granted! It involves a major operation most likely before Harry turns 1, which is daunting but amazing as he won't even remember it and should hopefully pick up speech from a very young age!

Today I felt sad, scared and happy all at once. I was sad that my son can't hear my terrible singing, scared for the operation but happy for the future and the thought of him hearing all the wonderful sounds the world has to offer him!

So tonight, as I write this I'm sitting cuddling my baby boy in his sleepy milk coma in absolute silence, realising that even with no sound or words spoken he knows how much we love and adore him and life's going to be just fine 

#HelpingHarryHear

Today our little superstar got his first set of hearing aids! He was sooooooo brave and very well behaved even though there was a lot of poking and fiddling about with his poor ears!!

Only time will tell if, and how much, baby H can hear but we have only been home a couple of hours and he seems to be reacting to noise and is more alert than ever!! 

I thought that seeing Harry with hearing aids would make me feel sad and sorry for him, but I actually think he looks rather cool and more beautiful than ever!

I feel a huge sense of pride at being able to say that I am this amazing, special dude's mummy!