When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Friday, February 11, 2011

Answers or more questions?!?!

We met with our Paediatrician the day after my last post. So much has happened since we last met with her 3 months ago.
We had our trip to Melbourne for Veronika's heart surgery, last November. The surgery that never happened, because Veronika's heart is beginning to heal all by itself, a BIG answer to prayer. We are heading back to Melbourne in May for another check, to see how things are going, and hopefully she still wont need the surgery.
Then late November Veronika had a hearing test which she failed. They audiologist tried to tell me that she couldn't hear at all in 1 ear and  the other had partial hearing loss. I didn't agree, and when we saw the ENT specialist 2 hours after that, he agreed with me. Both her grommets were still in, and he thought they might fall out in the next 2-3 months, so has re scheduled an appointment for around 6 months time, and may redo grommets if necessary and while she is under the anaesthetic he will do a hearing test then. Apparently that's the only way to get an accurate result.
I also talked to her about the letter we got after seeing the baby neurologist. She has said not to worry and explained the BIG medical words that I was concerned about. Mainly to do with the nodules around the ventricles. She has recommended that Veronika has another MRI of her brain around the time of her 3rd birthday, which is in May. As it will be 2 years since her last one, and she agrees with the baby neurologist that it would be worthwhile to see if there are any changes.
We also talked about Veronika's diet(or lack of eating) and I went through with her what the Dietitian has recommended.  I have been concerned that Veronika wont drink anything but her formula, and when we have tried to cut that back to make her hungry, she doesn't really eat anymore than she would normally. I reduced the formula for a week, and then because her fluid has been  reduced, she stops using her bowels for around 3 weeks, and understandably she gets quite grumpy. She said not to worry about reducing what she eats/drinks and she thinks that when Veronika is hungry/thirsty she will hopefully start to eat/drink more and a variety. Well as much as a variety that you can have whist avoiding wheat, gluten, eggs, dairy, soy and rice milk!
Overall her Paediatrician was really happy with Veronika's progress. She was amazed how much she has grown over the last 3 months, and how much stronger she has become. She has arranged for us to see her soon after the MRI she will schedule, and the trip to Melbourne to see the Cardiac team which is also in May.

So I think I have some answers to questions, and maybe some more questions......

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