Saturday 1 November 2014

Confirmed diagnosis.

On Monday 27th October, we had an appointment with the neurologist at Birmingham Childrens Hospital who has been looking at Annas case with the general paediatrician. In the room alongside her were the metabolic consultant, the genetic consultant and a sister from the neurology ward, all of whom have been looking into Annas case. The good news is that Anna does not have a neurological, metabolic or genetic condition. The 3 consultants we saw are happy to discharge Anna from their care. It may be that if and when Anna begins having seizures, we will be back under the neurologist, but for now, we don't need to see her again (less appointments, wahoo!). The doctors are now 100% certain Anna contracted congenital CMV in utero. They have told us they expect her to be limited mobility wise, however they are positive that there is some learning capability there. We are not sure of the capacity that she will have yet, but her interest in her surroundings is proof enough to the doctors that she is capable of learning, even if it is just a little. Anna does have cerebral palsy. And she has sensorineural hearing loss in her left ear. The nerve and cochlear are not connected, so she is not able to even be issued with a cochlear implant. Thankfully her vision is perfect.

Getting a diagnosis is harder than I thought it would be. I assumed that when we had a diagnosis, I would know exactly what we were looking at and could look to the future. But I haven't. If anything I feel a bit at loss. We've come to the end of the road, and whatever happens, happens. I'm hoping it will get easier in time, I'm sure it will. I guess we'll just have to wait and see. At the moment, I'm just trying to take things one day at a time. 

I would also like to use this post to reiterate that Anna IS NOT contagious. Just like when we have a bug and then get better. This is whats happened with Anna. Coming near Anna will not infect you and nobody has any reason to think otherwise. This point completely passed me by until the neurologist mentioned it, so I feel as though I should put it out there in case anybody thinks otherwise. Other than this Anna is still happy as ever! She now has 2 teeth, lots of hair and is getting stronger each day. Her physio is going well, and we have now also started having occupational therapy every fortnight. Already her personality is starting to shine through. She seems to have an eye for the men, and a bit of a sweet tooth! She still thinks her brother is the best thing since sliced bread, and enjoys having rides on his back. She loves being outdoors and looking at the trees, giggling when the wind blows on her face. And of course, Sophie the giraffe is still her greatest companion!

Please remember if theres anything at all you want to know about CMV or Anna you can ask us and we won't be offended! We welcome people asking us questions, and want as many people to be aware as CMV as possible to try and prevent this happening to any other family.

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