He’s Hearing

One year post activation and I haven’t dared to tempt fate but yes he can hear me call his name and I cry when I write this as I never thought i’d see this. He has learned to shout and it fills my heart with joy.

Yes I do believe in miracles. I will never give up.

Nearly 3 years ago we set up his hopeforhearing fundraising page and to answer questions as people for afraid to ask us about him.  After the 1st ABI surgery failed i deleted his wonderful Theoshope4sound Facebook page as it broke my heart to see all the messages wishing him luck in the surgery and then it didn’t work and I felt I let him and everyone down. 2 year on and another surgery completed and he’s celebrated his first hearing birthday.

I will blog, i will share the highs and the lows in the hope that our journey will inspire others as they set out on the bumpy journey when you discover your child has a hearing loss.

He has a new facebook page @theoshearing which I promise i won’t delete.

John Tracy Clinic – Summer 2017

We were very fortunate to get to attend the International Summer Preschool Programme for Deaf Children and their parents in July.

2 weeks spent in student digs in central LA mightn’t sound like a great idea but it was truly the best 2 weeks we as a family have spent since Theo was born.

Harry went to Science Camp for the 2 weeks and absolutely loved it.

Every day Theo went into the preschool from 9-3 with 9 other children aged 3-5. The children all had different types of hearing loss – some wore hearing aids but most more cochlear implants and Theo was the only ABI child.  We spent the first 45 minutes playing with him and then the parents went to class.

We learned so much about Hearing Loss, about being advocates for our children, about language development.  We learned the importance of knowing families who can support you.  We got to meet 9 wonderful families from the US, Ireland, Canada and India. We have made friends for life and will treasure the time we got to spend with people who are on a similar journey to us.

We had lots of counselling and group hugs – it felt very uncomfortable as europeans to share but after one or two sessions the weight was lifted from our shoulders. You take such comfort from knowing that you are not alone with all the thoughts in your head.

We met families who had graduated from JTC and were able to get a glimpse of what our childrens’ future might look like. It gave us more hope but also highlighted the hills they will have to climb.

Theo came alive during this programme – he had friends  with little things strapped to his head, just like him. He loved the learning through play and it worked as coming back through the airport on the way home he called out MAMA (without being prompted) for the first time when he saw me. Stephen cried and now he does it all the time.

If you have a child with a hearing loss – please have a look at their website and see the parent education programme.

Worldwide Parent Education

 

 

 

 

Tips for parents of newly diagnosed children

1: Don’t Blame yourself

I know it’s easier said I know but you may never know the reason so move on from it , find a way. Don’t be afraid to cry and tell people how you feel

2: Enjoy your baby

I missed out on so much with Theo because I was looking for a way to make him perfect, to make him fit into our world . It was naivety. he is perfect, he’s gorgeous, he’s happy and fills our heart with Joy everyday. Don’t see what he or she cant do but see what they can. Celebrate every milestone they hit. Theo has made us better people, more tolerant, more understanding and we have met the most amazing people across the world because of him.

3: Find the best professionals to work with your child

Don’t accept mediocrity. Your child needs the best support and so do you. It makes everything easier when you have people who have your child’s best interest at heart and who can support and guide you through the process.

4: Research Research Research

The internet is a wonderful place not to find big long articles about the condition but to find other parents and families to support you. We’ve found our biggest source of comfort has been to speak to other families who have been through something  similar, it makes you realise you are not alone.These people you meet will become your extended family, part of your support network. Reaching out will show you that you are not alone.

5: Write things down

Take a notebook to appointments. Myself and Stephen would both interpret what a professional said in different ways and it would only be after when we read what I’d written down verbatim that cleared things up.

Make a list of questions before going to your appointments as sometimes the emotion can take over or your mind may go blank and your questions can be your crutch and guide you through the meeting .

6: Believe that it will all be ok – because it will.

It took a long time for me to get here but it’s true . Yes Theo will face hurdles but he will climb over them and face the world with the confidence we have given him to believe he can achieve whatever he sets his mind to.

 

Guilt

The Guilt never stops.

Somedays it feels like is all consuming and other days its not to the surface but always bubbling away underneath. I cry, In the early days i cried for what he would never have and i guess i grieved.  Every parent with a special needs diagnosis grieves for the dream of how we thought they would grow up and turn out.

I still cry for what he’s missing out on – sometimes its when he goes to sign to people and i realise so few people can communicate with my gorgeous monkey. He is a beautiful, happy confident and loving boy but he misses out on so much.

He’s been tested for every known cause for deafness and he doesn’t meet any of them. No one can tell me why everything else developed normally and his auditory nerves did not grow.  The doctors say these would have developed at 6-10 week stage of gestation. I never drank, i never smoked, i drink decaffinated coffee, I took my vitamins, i took my folic acid. I did everything by the book – except work. I worked 14-16 hours a day – 90 plus hours a week, I travelled, i flew, i never let my body rest – I ask myself is this the reason he was born deaf?  I will NEVER know the answer and it doesn’t matter what people tell us I will always blame me as he’s my son and I think its my faulty genes. Stephen always says – theres nothing you could have done but as a mum you feel responsible.

9 months he was in my womb in silence – that breaks my heart, how lonely and scared was he in the dark. They say its easy to get a baby to sleep in a car as the sound of the engine is like the sound of a mothers heart beat. Theo has never heard this and i feel sad when i think of this or someone says aw i bet he will sleep in the car on the way home.

We have submitted our bloods for Geonome Testing in the Geonomes 100000 project but have been told this will take 5-6 years to get anything back and even then it might not ever tell us. I no longer have the same need to find out but I would like to know for the boys future if it was a gene mutation or just one of those things.

I feel guilt for taking my family to Italy for a surgery that didn’t work, i feel guilty because so may people raised funds for a surgery that didn’t work.

I feel guilty that Theo has had 2  lots of brain surgery  – choices i’ve made for him. He’s been through so much in such a short space of time.

I feel guilty for not signing early enough – will he ever be age appropriate?.

I feel guilty for all that Harry has seen and witnessed at such a young age.

Through the last 2 years i’ve realised that i have 2 choices 1) i can be over protective and wrap him in cotton wool or 2) I can pave the way for Theo and help him make his own mark on the world.

I’ve chosen 2

One day the guilt might lessen. The lesson i’ve learnt is don’t let guilt eat you up. Show your baby the best of you.

 

 

 

 

No more nebuliser 01/07/2015

I could shout from the rooftops I’m so happy the consultant has said there is no need for the nebuliser. It has taken 3 people to hold the poor baby down and use the nebuliser 3 times a day for the last week. He must continue his antibiotics and go back on Friday.

Marathon Day 27/06/2015

Today is the day he should have been having his operation. Josh butler from Cork in Ireland is having it today.

today is the day Alice & terry runimage the Waterford Viking marathon.

terry broke the Guinness world record completing the marathon in 3 hrs 17 and Alice completed the half marathon in 1 hr 58.

thank you to them both for all their fantastic fundraising

No operation for now – 25/06/2015

When we arrived in Verona the landladies husband asked me to go straight to the hospital to have Theo checked over by a doctor.

The Doctor confirmed that Theo had bronchial problems and needed to go on strong antibiotics and a nebuliser for a week.

she also confirmed that the operation could not go ahead on saturday.

Airport Stress – 24/06/2015

Leaving Harry at the airport was the hardest thing I think I’ve ever done – he cried and cried and so did I.

To make it easier travelling on my own I carried theo in his papousse through the airport – what I didn’t factor in was setting off all the alarms as I forgot my phone in my pocket and then having to be searched with Theo sitting on the ground . Both my bags were also emptied making a stressful day even worse .

i asked a girl to take a picture of Theo & I and I thought I was going to be arrested (photo below) as they went through my phone to exams photos .

Verona here we come ….

image

 

Finally a date 22/06/2015

We finally have our date and to say we are anxious is an understatement.

theo will have his operation on 27/06/2015 – the same day his wonderful godparents are running the Viking Marathon for him.

the operation is no longer in Milan, now that we have finally found somewhere to stay!, it’s in a place called Negrar which is a very quiet village 15km from Verona.

ive been to the doctors today as Theo was off colour all weekend and has a little cough today – am worried Jn case it becomes bronchiolitis but the docs have assured me it’s only viral and I’ve nothing to worry about. I requested an antibiotic to be on the safe side as don’t want to be sent home again