Heartland Hospital - Dr Hackett
7th April 2017Sat in bed tonight with a massive smile across my face!
Feel like we could finally be getting somewhere for Daisy.
After worrying about this anti-viral medicine (valganciclovir) and how it was going to effect Daisy. We actually got told today by Dr Hackett that Daisy won't be needing the anti-viral medicine. To some people you might be thinking why is this a relief shouldn't Daisy have this?
The answer to that is no she shouldn't. Daisy's ear's can not get any better, she is profoundly deaf in both ears. Not even hearing aids work for her. So even if she took this Anti-viral medicine, It wouldn't help her hearing at all. She would still be profoundly deaf. If her hearing loss was at 60% then yes the valganciclovir would be given to her straight away preventing it to get any worse. But Daisy's hearing is already at its worst, so the anti-viral medicine is just pointless to give to Daisy. She is also not symptomatic to any other signs that CMV have. She is a perfectly healthy baby, other than her ears.
The answer to that is no she shouldn't. Daisy's ear's can not get any better, she is profoundly deaf in both ears. Not even hearing aids work for her. So even if she took this Anti-viral medicine, It wouldn't help her hearing at all. She would still be profoundly deaf. If her hearing loss was at 60% then yes the valganciclovir would be given to her straight away preventing it to get any worse. But Daisy's hearing is already at its worst, so the anti-viral medicine is just pointless to give to Daisy. She is also not symptomatic to any other signs that CMV have. She is a perfectly healthy baby, other than her ears.
He was such a lovely man, who answered all our questions we wanted to know. Our main one being; Would it effect Daisy having her operation? No it wouldn't, she can still have valganciclovir when going through the cochlear implant route. She would also have to have weekly blood tests to ensure the medication wasn't affecting her white blood cells too much and if it was then they would stop the medication.
Dr Hackett has referred Daisy to a women called Alice who will do Daisy's Physio side of the CMV. To make sure she is hitting targets in her development, holding her head up, sitting up etc.. We will see her once Daisy is 6 months old.
We are still waiting for a date for Daisy's MRI scan, Which I will be chasing up first thing Monday morning. Along side ringing up Ivan for an appointment to have more molds done for Daisy's hearing aids as her ears are growing every day. Dr Hackett also wants us to chase Nottingham hospital to see when we will be meeting the consultant there to start the process for the cochlear implants.
Its all full speed ahead at the moment. My head is just to crammed with so much information, I feel like I'm going to blow one day!
At the end of this I could probably be a Nurse.
At the end of this I could probably be a Nurse.
5th April 2017
Teacher of the deaf came out. She is so helpful.
She is coming again next week, with some cards and information on sign language and how we can communicate to Daisy and also help her communicate to me. She told us that once Daisy has her cochlear implants that she will probably hardly ever use sign language, but its handy to have just in case.
Teacher of the deaf came out. She is so helpful.
She is coming again next week, with some cards and information on sign language and how we can communicate to Daisy and also help her communicate to me. She told us that once Daisy has her cochlear implants that she will probably hardly ever use sign language, but its handy to have just in case.
Some people ask me what the procedure is that they do to Daisy when she goes in for her operation. I say I don't know. I generally don't know what they do, and I think I don't want to know. Is that wrong of me?
I don't think id cope if I knew what they were doing to my baby's head. I'm going to be a nervous wreck the whole time she is under. I feel sick just thinking about it now. But it's going to give her a new sight into life, the life of sound will finally be apart of her, instead of just silence.
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