Daya’s health update March 2020

Daya’s health update March 2020

So it’s been a while since I made another update on Daya’s health.

I figured I should make a quick update. If you are new hear begin from the start 🙂 by clicking here: The dark cloud of cytomegalovirus: congenital cmv

Cognitive and speech tests

I have received the test results from her speech and cognitive testing.

It came as a surprise to me that they weren’t that good. (except her speech, i expected that)

Keeping in mind that it is hard to test a toddler that just wants to play, I don’t stress it too much right now.

The cognitive results were average and just below average for her age.
But knowing how Daya is, I keep in mind that she only does what she wants. (I have no idea where she got that from 🙂 )

Her speech was very delayed, which I kind of expected.

But a couple weeks after the tests she suddenly took a huge step forward and learned more words, started using two word sentences..
So I am not too worried about that! She will find her way.

Hearing test at her ENT.

A couple of days ago she had to get her half yearly hearing test done.

I was super stressed about it because I had been noticing that she doesn’t respond all the time and just general feelings of her hearing getting worse.

So we went to her ENT, had a talk about a possible cochlear implant in the future, and went on to her hearing test.

Her left ear (her hearing ear) went from being perfect at birth to now ‘severe hearing loss’. She only start hearing from 65db in that ear.

So at the moment she is completely deaf in her right ear, and severe hearing loss in her left.

I tried to keep myself together and not burst out in tears at the doctors office. We talked about why she could have this sudden change.

The doctor came to the conclusion that since she had fluid in her ears she has to get eartubes placed.

On April 2nd they will do that.
IF her hearing gets better once the tubes are placed; PERFECT!

If it stays as bad as it is now, she is finally according to Belgian laws deaf enough to get a free cochlear implant.

It is an extremely weird situation where everything has to get worse before they make it better.

If her hearing ear does get better though, I will have to find a way on my own to pay for her implant ( 20 to 30 000 euros!! )

The infamous car cry

On the way back home I cried. I bursted into tears.
Those feelings of selfblame and guilt that I have been feeling since her diagnosis of Congenital CMV came back fullblown.

My body failed us, it should have been able to protect her from the virus.

It failed.

I failed.

I’m a failure.

I’m a failure because I couldn’t protect her.

I’m a failure because I can’t afford her implant.

And then I look back to the backseat and see Daya, acting silly.
Being her happy self. Laughing and singing.

And I’m not a failure anymore.

She is happy, and I will find a way to make her life as easy as possible.

She will get her implant, and talk the ears of my head.

Love Always, Gitte 

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