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’.
Tuesday, March 29, 2011
Its so very exciting, and I can now actually see things coming together. 6 weeks ago, I gave myself 6 months to reach $6500, and now i think it is actually achievable, mostly due to Sally and Bob's idea for the major Gala events. So far, after the fundraising BBQ, some donations from people wanting to contribute to VWW, and selling Tasmania Entertainment Books I have banked just over $1000 into Veronika Will Walk Fundraising Account.
The other exciting thing this week, was I emailed our local council to find out what I needed to do next, and who I needed to talk to about planing for the concrete slab, after JDM Contracting contacted Sally thru Veronika Will Walk Face book page. JDM Contracting are kindly donating the concrete slab for Veronika's Hydrotherapy Spa to go on. SO I wanted to find out what to do next. The reply email from the council, along with the Lady's name and phone number I need to speak with about planning, said that at the March Council Meeting they agreed to waive the fees for planning and building, saving us around $1300. They discussed this after they contacted us after seeing a story on Veronika in the Mercury, when we were interviewed about the NDIS.SO Thankyou to Brighton Council, Thankyou, Thankyou, Thankyou.....
The other thing I have done this week is to set up a donate button on this blog. I have had people saying they want to donate to VWW, or they want to attend the May 28th Events, but they are going to be away. So I decided that maybe it was about time to do something that I am really not good at doing, possibly not even comfortable with, but its for Veronika, and I would do anything for her. So there it is......a donate button. The other thing I thought it would be useful for is people can purchase their tickets for the Gala events happening on May 28th, and then when we see people we can give them their tickets, or they can be posted out to them. Just have to make sure that we can reference where the 'donation' came from, so we can track of who the tickets belong to.....
We went over to the wait for our coffees and Kelly asked Veronika what she was going to have. I have been teaching Veronika to sign "coffee" and today she signed "coffee" to Kelly. Then I asked Veronika if there was anything else she wanted, and she signed "Biscuit". That was our new sign she learnt last week. So coffee and a biscuit it was to be......but instead she had to settle for babycino and date scone!
I was so proud that Veronika is learning more signs now, and it isn't taking as many times of me doing them over and over again before she is attempting to do them. She is of course slightly adapting them to make them easier for her as her left arm and hand is her side effected by her cerebral palsy. Last week Veronika also learnt to sign "play" and "Willow"(Veronika's Best Friend). Now Veronika gets very excited when I tell her we are going to play with Willow and at tea she told Daddy, she went to 'play' with 'Willow' today. I feel like Veronika is signing in sentences, I do know its 2 words, but to me, her proud Mummy, Veronika IS signing in sentences!!!
Friday, March 25, 2011
The next day saw us venture out to get the moulds made for new ear plugs. As Veronika has grommets in both ears we have to keep her ears dry while at hydrotherapy and at home in the bath and shower. She has had her ear plugs for about a year now, and I think her ears must of grow as the plugs seem to be falling out more often than usual, some of that is also because she keeps taking her head band off that helps to keep them in! The other problem is that the ones she has at the moment are her original ones, and they are clear! have you ever tried to find tiny clear ear plugs in a swimming pool.....do yourself a favour and put it on your list of things NOT to do in your life! So I asked this time if they can colour them, and they can. They lady suggested a different colour for each ear, and I though why not, so we are going red for right and blue for left. I also thought that this could help me decide which are easier colours to find for future sets of ear plugs! So roll on our appointment in 2 weeks so we can try them out.
The day after that we went looking for a pram with Veronika's physio. She has outgrown her pram(which was mentioned in previous blog a while ago), and after not being able to decide between a wheel chair or pram, I decided a pram is more suitable at this point in time. So off the the baby shop we went. I came away slightly disappointed as was really hoping to find the perfect pram NOW. There isn't much choice in bigger prams, well actually I have a choice of 1 pram. It has some really nice features, but I am just concerned as it fits her really well now, and doesn't have as much 'growimg room' as I was hoping for. Not just seat to head height, but knee to foot length. Her feet rested perfectly on the foot rest now, which means I am going to have to try to figure out how to modify it to suit as she grows. I have some ideas about that, but there are some people I need to talk with first. So the next week will see me doing a lot of research and asking lots of people what prams they use, and hopefully I can make a decision really soon, so we can get onto organising it through the physio.
Monday, March 14, 2011
Today Veronika achieved a huge milestone, one that we have been working on for over 2 years.
Saturday, March 12, 2011
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.
Monday, March 7, 2011
Yesterday we had our 1st Veronika Will Walk(VWW) fundraiser. We had a BBQ at K&D, after the drip pan in the BBQ caught fire and we had to empty a fire extinguisher over the BBQ, they went to find another one we had a great day. We raised $437.50, and so the fundraising has begun. I felt so humbled that my friends and family gave of their time to come cook and sell sausages, and others that came to buy a sausage or 2 or 3. Thank you again. I still don't ever know how to say THANK YOU enough.
On another note Veronika is off to see the Eye Specialist tomorrow. We haven't seen him since around the time of her 1st Birthday. When she was given the all clear, and he said "There is no reason to see him until around the time of Veronika's 3rd Birthday, as everything looks fine at this stage". To which I replied "That's the best news I have had since Veronika was born", and he just looked at me, and I said "Seriously, that IS the best news I have had since she was born". And he replied "OK". I still think it is really bizarre how some conversations I have had with Doctors I can remember them better than those I had today. So praying and crossing fingers that everything is still great. Of course I do know that there are no guarantees and this can change at anytime.....
Tuesday, March 1, 2011
I must admit that Jakob made us all have a good laugh at the interview. When the photographer was taking the photos, Jakob went and got his iPod and asked her to take a photo on that. he then asked her for her email, so he could email the pic off the iPod to her to use in the Paper. Was rather funny, she did give him her email.....so will wait to see which pic she does use! Will be interesting to see tomorrows paper and see how my opinion comes across.....