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, October 29, 2011

St Giles Walk With Me...

I cant believe how fast the last 2 weeks have gone....

Veronika was an Ambassador for St Giles Walk With Me(on October 16th), and the day was fantastic. The weather held off for the most part. We have been going to St Giles since Veronika was about 8 weeks old, so it's was really good to be able to give back to them, as they have done so much for Veronika. I have a couple of pics from the day...

Veronika with the Pied Piper and Giles

On Walk With Me, Fairy Veronika and Mummy

The BrightStars Dancers then Performed

 After the walk we had a couple of 1st.....Veronika had her face painted, well her cheek. A flower to match just the same as Willow's.

Isn't she pretty....

 and the other 1st was Veronika(and Willow) went on the jumping castle.

don't they look deep in conversation here?

Wednesday, October 19, 2011

Ten things people with Down syndrome would like you to know

Just because I wasn't busy enough.........

You have probably heard about the Better Start Funding....its funding for additional early intervention therapies. We are blessed that Veronika's diagnosis fits the listed diagnosis to qualify for the funding.

I had been think for quite some time about getting Veronika additional Physiotherapy and Occupational Therapy(OT). I registered Veronika under the Better Start funding in July, and last week I made a few phone calls, spoke with a few friends with little ones with additional needs as to who they see privately, and then spoke with some therapists.

I talked with an Occupational Therapist and we decided to see her fortnightly until the end of January, and booked all the appointments in......(just hope I don't loose my diary, should write them all on the calendar at home too i guess!).

I also talked with the Physio that has seen Veronika thru her school(ECIS), and we booked to see her in November, but I requested to see her early if she got a cancellation. I had a phone call on Monday, they had an appointment for Tuesday(yesterday) so I took it.

So yesterday morning we went to MyTime(support group for families with pre schoolers with additional needs) then went off to see the Physio. We didn't need to waste any time with a history as she 1st saw Veronika when she would of been around 8 weeks old. She wants to get her into a second skin


as that will help so much with her core stability, which will in turn help with her arm/leg function. She has given us some things to work on at home.

We then went to see the OT. She has so many fantastic ideas for Veronika. I was shocked how quickly the OT got Veronika to do what she wanted. Just really simple ideas, things that won't cost anything, that we can work on without having to go out and spend heaps of money that we don't have! One of the 1st things she did say though was, "I want to see her in a second skin".

I find it amazing how things happen, as I emailed her Physio at St Giles last week asking her to look into if a second skin would be appropriate for Veronika. I got an email back Monday, saying she had looked into it and she would talk more with me about the clinics that the second skin people do down here when she saw me on Wednesday(today). I think the private OT and Physio confirmed that yesterday, and today I told the physio today that Veronika needs a second skin. So now I am trying to figure out the best/fastest way to get one for Veronika!.

As we were leaving the OT yesterday, the Speech Therapist that I had called and spoken with about seeing Veronika privately had a quick chat with us. Her books are full and she isn't taking new patients, and recommended someone else in the same practice. She said she would be following Veronika's progress. She 1st met Veronika when she was about 7 weeks old and had not long been home from hospital, as Veronika's oldest brother was going to see her for Speech Therapy. So I looked at the receptionist to make an appointment, and she had just had a cancellation for today, so I took it.

So today we started private speech therapy! Oh the ideas she had.....

Can I just say my mind is full of the possibilities......

Monday, October 10, 2011

there is never a dull moment....

Yet again, so much has been going on......

Veronika was asked to be an Ambassador for St Giles Walk With Me. It is on this Sunday 16th October. Starting at the Lawns of Parliament. Veronika has been going to St Giles since she was 8 weeks old. We started off seeing a Physio there and an Occupational Therapist and continue to. We have also seen a Speech Therapist there, and its the St Giles pool that we go to weekly. So it was our pleasure for Veronika to be an Ambassador and give a little something back, to St Giles who have supported us so much on her journey to mobility, and continue to.

Veronika and Willow have joined forces and have registered a team for Walk With Me, and naturally their team is Walk With the SuperGirls.....explains itself really. If you are free this Sunday please come and show your support for Veronika, and Walk With Her, or if you want you can follow the link and donate to Walk With the SuperGirls.


 Veronika and Willow....our SuperGirls

As you know from my blog in September, Veronika has begun to 'cruise' a little bit along the blanket box. So today was a very exciting day, we went to get her measured for a walking frame. Her physio was going to put the order in today, so fingers crossed it will be ready Wednesday next week, when we see her Physio next. Then to see if she can manage it with her left side(side affected by Cerebral Palsy). In particular her left hand, as we don't know if she will be able to hold on to support herself.

I have spent the last 2 weeks stressing over how much Veronika is drinking, or rather not drinking. She usually drinks close to a Litre of formula, but for the last 2 weeks she has all but stopped eating, and is only drinking 350-400mls of formula. I called Paediatric outpatients asking to see her Paediatrician, and was able to get an appointment 3 days later, when she was next in. In the mean time, they said take her to the GP and get her checked that there is no reason she isn't drinking. Of course the GP couldn't find anything, and agreed that yes she did need to see her Paediatrician, and was glad we had an appointment. When we went to see her Paed, as we were going into her room, she was commenting on how well Veronika was looking.....I agree yes she is looking the best she has looked in a very long time....she just wont DRINK. She asked Veronika if she drinks, to which Veronika signed "drink" followed by "milk"....and then she asked her again if she actually drinks, to which Veronika grunted and shook her head. After a thorough look over, she could see no medical reason Veronika wouldn't eat, except to "stress her mother out"....."which appears to be working". Yep had to agree with that diagnosis! Her Paed was very impressed that Veronika could 'cruise for her chocolate', and said maybe we need to use some old fashioned bribery and corruption.....

If you drink this(showing her the bottle of milk)....you can have this(a piece of chocolate)!

So we are back to checking her often for signs of dehydration, but as she continues to look so well, there is no point going to the emergency department.

We have finally got  the plans for Veronika's Hydrotherapy room that we are building. They have been submitted to our local council, so fingers crossed we can get things rolling a bit faster from here on. I cant wait for the end product, but I know that it will be worth the wait. Veronika is going to love getting in the water every day. I can just picture her sitting at the back door pointing out to the room, and signing swimming. 

 In my spare time I am also helping organise Down Syndrome Tasmania's Buddy Walk.....   This will be on Sat 29th October. BrightStars will be dancing at Salamanca at 12 noon, followed by activities and a BBQ on the Lawns of Parliament, and then we will be off to walk around Salamanca at 2pm. It is going to be an action packed weekend, as our North West BrightStars Dance Troupe will be touring the south of the State.

So between Veronika's regular appointments, St Giles Walk With Me, following up on the Hydrotherapy room, Organising Down Syndrome Tasmania's Buddy Walk......as well as following up on other allied health appointments there is never a dull moment in our home, and as soon as I cross 1 thing off my to-do list, I seem to add 2 new things...