My daughter’s health today: cytomegalovirus and deafness.

My daughter’s health today: cytomegalovirus and deafness.

My dear daughter is 14 months and a half now.

In the meantime she has had 3 extra hearing tests, 2 university study for babies with single-sided deafness and an extended examination at COS Antwerp for her development.

 

If you haven’t read her 3-part story about her Congenital CMV sure do start here with part 1: The dark cloud of cytomegalovirus: congenital cmv
And then come back to read this.

Her hearing

As known, her hearing is the biggest issue right now.

But I can happily say that all her tests always came back with good results!

Her left ear (the one which she can hear from) has been said to be ‘almost normal’ which is absolutely perfect!

I am also ‘almost normal’ LOL.

However, if one day her hearing gets worse in her ‘hearing ear’ she might have to get a cochlear implant so she can ‘hear’ with her right ear.
BUT that is really a plan Z.

In the waiting room before her latest (of 3) hearing tests.

 

As longs as she can hear from her right ear she doesn’t really need it. It is a big operation and it costs between 20000-40000 euros.

She did have two ear infections the past months which really scared me! But during the tests the Professor saw that there was only some redness in her deaf ear, luckily not in her ‘hearing ear’

Note : I do not like to say ‘good’ and ‘bad’ ear, it gives a negative vibe, there is nothing wrong with her deaf ear it is not a bad ear.  SO I just say ‘deaf ear’ and ‘hearing ear’. 

I did receive some questions from friends if she can ever hear again in her deaf ear.

I never even knew this was a question people would ask themselves, so to bluntly answer: No.

 

How does her unilateral deafness affect her up until now?

Well I do see tiny little differences between her and other toddlers.

I also have some things I need to remember when speaking to her.

As in making sure I am on her left side, because if I speak while I am at her right side some words might get lost.

I also whistle to get her attention when there’s lots of noise or if she is too focused. It works best for her.

In her daycare they say she doesn’t like to be surrounded by lots of other kids, we think it is due to the noise.

When there’s lots of different noise it makes it really hard for her to process what’s going on.

I have noticed this too at her birthday party etc: she really doesn’t like noise.

I can completely understand that; she can’t understand a word when there’s lots of people talking, it is all just loud noise.

Imagine being in a fishbowl with your head, in a club with lots of music, and someone tries to talk to you.

She also doesn’t know where sounds come from so she has to look around to find me.

But hey, if that’s the only obstacles she’ll ever have in her life then I’m the luckiest mom on earth.

It could have been so much worse.

 

COS Antwerp

When she was 12 months old we had to go to the center for developmental studies.

I was nervous because altough she looks fine to me, I am not a professional.

I didn’t sleep anything the night before so I was a real mombie.

Having no idea what exactly would happen, I almost shit myself when we had to wait for almost 45 minutes. (Not literally, duh)

Don’t let a stressed person wait.

Daya ofcourse had no idea what was going on and was her happy self. She had so much fun playing in the playroom!

She will have to go again in 6 months (now 4) and then she will also be examined by a speech therapist.

Child Neurologist

She had tests taken by a child neurologist, which I was extremely nervous about because of her ulcers at the sides of her brain.

And let’s face it: brains are kind of an important deal.

But everything came back absolutely perfect ! She scored a month higher than she was supposed to be.

They again asked why I didn’t take a second scan of Daya’s brain: she would have to be put asleep AGAIN, and was not allowed to eat hours beforehand. (hahahahaha you go and tell a breastfed baby that she is not allowed to eat.)

Since she is developing normally I do not see the need for another scan.
Would she have had troubles with her development I would have taken the second scan, but now, nop. Not necessary.

Please remember it is still YOU that decides what procedures are allowed to happen with YOUR child.

After she did Daya’s testing she understood why I did not deem an extra scan to be necessary.

Physiotherapist

During her tests at the physiotherapist she Assessed her movement, her independancy etc.

I was told she had never seen a one year old that was so confident and daring! That she is afraid of absolutely nothing.
She is an amazing baby she said ! And I agree!

She didn’t cry once,  immediately tried to climb the stairs, began crawling etc. She put on a little dancing show for the physiotherapist.
Always throwing a little show my sweetheart.

All her tests were done perfectly and she scored a month and two months ahead! Absofuckinglutely perfect !

Child psychologist

She was already tired when she had her tests at the child psychologist, so she didn’t pay much attention.

She tested her pincher grip, how she puts relations between different actions etc.

Things that look so simplistic to us but are so important to babies development.

Although she was tired and distracted she did score a month ahead. Again.

 

University study for babies with unilateral hearing loss

When we found out about her single-sided deafness the professor asked if she could let Daya enroll in a university case study.
They want to find out if a cochlear implant makes a huge difference for babies/toddlers/kids with single-sided deafness.

Since in Belgium a cochlear implant for kids with single-sided deafness does NOT get reimbursed, this study could make a huge difference.

So ofcourse, since the study is non-invasive, I said yes.

Her recorder during her first test.

 

This means that every x-months she has to wear a recorder for a day and I have to fill in (lots) of papers about her.
They also come by and test her abilities.

Her first time everything was good, we just did her second one so I do not know those results yet.

Now that she is a little older and is old enough to start saying words it is all more stressy for me.

Since she is doing so good with everything else her speech is basically the only thing left that she could have problems with.

Her recorder during her second test.

What now?

Well, she will still need to get her hearing tested every 6 months up until she is 6-7years old.

Because eventhough she completed her 6 month treatment, there still is a chance of hearing loss in her ‘hearing ear’.

She will stay enrolled in the university study so those tests will also be going on for years.

COS Antwerp will also keep testing her for a couple of years.

But as long as she keeps doing so absofuckinglutely amazing, nothing will need to happen medical wise.

Party time

Last year I threw a party for her when she could finally stop with her medication.
I decided to make it a tradition and do it every year.

Those 6 months were the hardest in my life, and I am so proud of how she endured everything.

She deserves a party.

A celebration for how strong she is and how strong I had to be.

WE DID IT.

Maybe when she’s 15 she’ll think it’s stupid, but I know that one day she’ll appreciate it.

 


 

I am really grateful that we had the luck that I could write such an amazing update.

There is NOTHING in this world as valuable as health.

 

-x Gitte

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