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’.

Saturday, March 12, 2011

Veronika's Eye checkup was good news.......

What another busy week....but then I guess they all are!

Monday Veronika had a hydrotherapy session and her physio came in. She was really impressed with the good work that Veronika is doing in the water. She is becoming so much stronger, and her balance is getting better. The physio decided that we should make the water a little shallower(the floor in the hydro pool we go to goes up and down to get the depth right, yes I know that's very clever isn't it) so Veronika has to work harder to keep balanced. She showed me some new techniques to support Veronika in the shallower water.

Tuesday Veronika had her opthamology appointment. Veronika had a vision check, and the Dr said there is nothing to worry about. She said everything appears to be good, and has recommended that we see the Specialist in May when he comes down from Melbourne, but this is only a routine checkup that children with Down Syndrome have. I am super happy of course, it feels great to get some good news.

They were the 2 biggest appointments we had this week......

I also got  a follow up letter from Veronika new speech therapist this week, after seeing her the previous week. I am so grateful after appointments, when the Dr or Allied Health Professional writes to me, outlining all the things we talked about, and our main goals we have set. I find that because Veronika has so many appointments, and we do so much running around that it is easy sometimes to forget some of what we discussed. I guess the main goal that I talked about with the speechy, is one that I set at the beginning of every year, and this year I hope to achieve it. By the end of the year, I want Veronika to be able to give herself her bottle, because then I would have an extra 2 hours in every day. Because Veronika has low muscle tone, she finds it hard to hold a bottle, and out of habit she has got used to me holding it for her. We talked about the whole 'if she is thirsty she will hold it herself' issue, but unfortunately I have tried that, and she doesn't seem to be fussed whether she has a drink or not, and then as she wont drink she ends up constipated, not a scenario I enjoy.

So Veronika by the end of this year, you will be able to feed yourself a bottle! and a bonus would be if you could manage to drink out of something other than your bottle too.......

And on a wonderful note, 'My Little Project' to get Veronika a hydrotherapy spa for at home is coming along nicely. Sallyanne, who is planning the main Veronika Will Walk Gala Fundraiser for May 28th(so keep it free, its going to be awesome) messaged me yesterday to call her back as I was at work. When I called her, she was so excited. Sallyanne had got a message from someone who wants to help out with VWW, and had talked to her husband, who talked to his boss, and they want to help with the concrete slab for the hydrotherapy spa to go on. So I was shocked, speechless(and those of you that know me that never happens), and almost in tears in the middle of shoreline(the shopping centre where I work). I am happy, happy, happy and looking forward to meeting them, so they can come look where we are wanting the concrete to go. And as soon as I have talked with them, I will be letting you all know who it is.

The VWW Gala event is shaping up to be an awesome event, or events. Sat 28th May, 1pm will be a kids show, and at 7pm we will be having a concert and auction(hosted by John X)  for adults. More details will follow, but its gonna be awesome.

2 comments:

  1. Sounds like the big event is coming along well.

    Great news on the eye appt too.

    ReplyDelete
  2. Thanks Tammy, and yes plans for the big event are coming along nicely.

    ReplyDelete