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’.

Wednesday, January 12, 2011

To Google or not to Google....

To Google or not to Google?, That is the question.....Last October when we saw Veronika's paediatrician, I asked if we could see a baby neurologist. I was shocked when the Paediatrician straight away said, "Yes, I don't see why not". Why shocked you may ask. Usually I have to go thru my list of what I call, "Yeah, but....". I think she noticed I was shocked too, as she gave me 'that look', to which I replied "that was easier than I thought it would be", and "don't you want to know my 'yeah, but....' list." "OK" she replied.....

Well I think that we are doing everything that we can possibly do to maximise Veronika's potential, but what if the baby neurologist has 1 little piece of information that could make all the difference, and the brain injury specialist we see, has been very honest in telling me that he doesn't know how to treat Veronika. He hasn't seen a baby with Down Syndrome and Hemiplegia before. He has talked with his colleagues on the mainland and they don't know either.

Of course we don't have a baby neurologist in Hobart so we would have to wait to she comes to Hobart next(from Royal Children's Hospital Melbourne) which would most likely not be to next year(early 2011). So I was surprised when we had an appointment offered to us for early December. So went along not really knowing what to expect. Well the baby neurologist was lovely. She had so many questions for me, going right back to before Veronika was born, when my obstetrician noticed she had the bleed in her brain. She agreed that we were doing all the right things, as far as early intervention goes, which was rather comforting to hear. She agreed the only thing that we should do was a foot orthotic for Veronika's right foot as she had just started to pull up to stand at the couch(as long as we were holding her hands), and when she stands at the couch, her right ankle is collapsing because of her extremely low muscle tone. We already had an appointment at OPST(Orthotic and Prosthetic Services Tasmania), and were on to it. After a complete examination, I was told Veronika is coming along nicely. 'She has extremely low muscle tone(Hypotonia), perhaps she is the floppy-est baby I have seen for a long time. Her high tone from the Hemiplegia down the left, may in fact actually help in the long term to achieve a more 'normal' tone, even though she is having some very high tone and tight times. Maybe in fact because she has high tone it MAY even help her when it comes to weight baring through her left leg and could possibly help her when it comes time to walk'. Of course she couldn't say either way, but hey, we were told when she was a week old that she would most likely never walk. So of course I was happy with that. There is no real need to see her again, but at the same time, she would be more than happy to see Veronika if I was at all concerned about anything, and I should give her a call and she would be put on the list for the next visit to Hobart, after all she is 'just delightful'.

So why to google or not to google.......2 weeks ago I got a copy of the letter the baby neurologist wrote back to our referring paediatrician, and THERE ARE A LOT OF REALLY BIG MEDICAL WORDS IN IT. The letter was mostly good of course, but still some really big medical terms. Should I google or not? After all I don't really want to worry myself sick, when we don't see the paediatrician to late January. Should I just wait to when we see her and I can ask her what it all means then? For those of you that know me patience is not my best gift?  Had a friend come over last week and I asked her......google it. Maybe just some of it. So we did a couple of the words....well she hasn't had seizures, so I guess that doesn't really apply, hang on does that mean she is going to have seizures? I know all the doctors we see ask if she has had any seizures, but have never really thought too much about it, until you see it written......so to continue to google or not to google.....where do you stop, going from 1 link to another, to find out what you just read means. Can you ever find out what it really means. Just because its on the Internet doesn't even mean what I am reading is even medically based, or true......oh I think I have read enough now.....might just have to wait to we see the paediatrician later this month......now to be patient......

1 comment:

  1. It is indeed a fine line between being prepared and worrying about things that may never happen! My advice is to wait - but I know if it was me I probably wouldn't take my own advive lol! If there was anything to be worried about it seems like the lovely lady would have told you and perhaps she was pointing about things to your paed as remote possibilities to watch out for :-) You are indeed doing a fabulous job - as is Miss V xxx