Harmonic Medicine

Today Veronika and I went to a medical practitioner that practices “harmonic Medicine”….she tests for intolerances in a non invasive way. It was amazing that she picked up everything that I thought Veronika was intolerant to, as well as a whole lot more….Here is the list!

Veronikas list!
wheat
barley
rye
oat
corn
dairy
sugar
soy
berries
orange
grapes
apples
yellow food colour
apricot
peach
kiwi
mango
tomato
capsicum(all 3 colours)
egg yolk
egg white
peanuts
synthetic
flourescent light
she wants me to give her Vitamin D(as well as me) in the morning and zinc drops before bed
so now I will be tweaking her diet even further….not that she eats, but maybe that’s because i have been offering her foods that give her a belly ache…..

Words I have not heard a Dr say before….

Monday saw us go to Veronika’s appointment with the brain injury rehab specialist. He was impressed how well Veronika is doing. Last time he saw her she wasnt even crawling, and now she is starting to use her walking frame. When we got there I hadn’t put her theratog tape on her left leg, that helps align her leg and pelvis, as I thought he would be needing to examine her and would need it taken off. So after she walked a little in her frame, and he was talking about her leg being turned in, I said that I had some theratog tape for her leg. So I put it on her after he had examined her, and he was shocked how well it straightened her leg. He was actually amazed at how well it worked(I think he might have been a bit sceptical that a piece of theratog tape would make such a difference). I asked lots of questions, and the Dr wanted to know what therapy we were doing with her…..lots!

Then came the biggest shock, I have been processing it all week…

a good shock,

actually a fantastic shock

something a Specialist has NEVER said to me before.

He said that “I can’t guarantee it, but I can see down the track that Veronika might be able to do away with her walking frame and walk without it”.

That was a pretty BIG statement for me to take in….as I said its something a specialist has never said to me before, actually any of Veronika’s Doctors have never said anything like that before.
We chatted about her progress for a little longer. He wants her to see a speech pathologist to see if there is any underlying medical reason she isn’t eating or talking. We know that children with Down Syndrome have speech delay, but he just wants to make sure that there aren’t any other things going on that we don’t know about….other than that, he will see her again in a year.

Veronika’s left leg before straightening with theratogs(must take an after pic!)

Yesterday we have our 1st Playgroup at Early Childhood Intervention Services(ECIS) for 2012. It was so nice to get back to group, I realized how much I really  had missed it, missed seeing the other Mums and children. This was also the 1st time Veronika has used her walking frame to get into ECIS. The teachers and staff were so excited to see Veronika cruising along in her walking frame, and so encouraging.There are activities to do each session, and this week was ‘egg’ related(as in eggs for easter). Veronika wanted to do a  painting. We spent most of last year trying to get Veronika to stand at the easel to paint, and she wouldn’t. So yesterday when the TA asked if we were going to stick the Egg to paint to the table, I said no Veronika can stand at the easel with her walking frame, AND SHE DID!!!

 

 

After morning tea, it was time for outside play….Veronika used her walking frame to get out to the playground, and she went straight for the play equipment to crawl over, with a slide at the end. She had a lovely time going over the bridge, and then down the slide. I decided to over come another fear of mine, and let her crawl through the pine bark. Veronika has had 2 allergic reactions to pine bark in the past(both times it was new pine bark), and after the second one I havent let her get too close to pine bark, but she is starting Kinder next year, so I need to see how she goes as there is pine bark everywhere at the school she will go to…..and yay no reaction.

So all in all we have had a fantastic week

Hmmm

Tomorrow is another start to a busy week…..

1st appointment for Veronika this week is tomorrow with the brain injury rehab specialist. This is our once a year catch up with him
 
will be very interesting what he has to say about Veronika’s past 12 months, its been an amazing 12 months for Veronika with her development,
but

it will be even more interesting to see if he has any ideas on how to treat Veronika.

I am excited to see him, because of how far Veronika has come in the last 12 months. How many milestones she has achieved…..

but

the 1st time we saw him, and her diagnosed Veronika’s Cerebral Palsy(she was 11 months old), he said that he didn’t know how to treat her Cerebral Palsy, as he hadn’t seen the combination in a baby with Down Syndrome….

but that was nearly 3 years ago

so I wonder if anything has changed

…..

Veronika has her Second Skin(miracle suit…..)

Wow, wow, wow, wow, wow…..


I never thought Veronika’s second skin would make such a difference the minute she put it on the first time.

Even though this is her “I’m not to sure about this” face, I was shocked just how straight is makes her stand, and when she is sitting, there is no slouch…..well there is that much support in it, that she has no choice but to stand tall. Maybe it needs a much more suitable name, rather than ‘second skin’. I think Miracle Suit would be more applicable.

The main thing we have noticed since Veronika has had her Miracle Suit include improvement in her posture. This is because she has so much support in her core now. In turn this has caused a major change in the function of Veronika’s left hand. AMAZING how supporting the core of your body, can  cause your hand to work in a more natural way! As soon as the Second Skin therapists put Veronika into her suit, they sat her down on a little bench. I held some toys up above her left arm, and she immediately used her left hand to reach for the toys, instead of doing the bilateral right hand across her body.

This week Veronika’s therapists wanted to see her. You can see in the picture below that her left foot is pointing in, so one of her physiotherapists had ordered in some theratogs strapping tape, to strap her left leg into alignment. This is the before photo, but after she strapped her leg, her foot was in pretty much a perfect position(sorry I havent got a picture yet!)

Veronika is using her walking frame so much more. The front wheels are locked so she can’t steer it yet, not until she has much better control going in a straight line. We have been taking the walking frame out with us a lot more, there is a knack to fitting the pram and the walking frame, as well as the boys school bags in the boot of the car!

Veronika off to see the Physio at St Giles.

We also went to see Veronika’s private Occupational Therapist this week. She was amazed at the difference in Veronika…..the differences the Miracle Suit had made. Posture, gross motor skills, fine motor skills, endurance, but the BIG surprise that she noticed was that Veronika is making so many more sounds. She is trying hard to copy words that we are saying to her. We arent to sure if it’s a coincidence that she is making more sounds, if it is the second skin taking the pressure off her core, which in turn is giving her the chance to use that energy in another way…..verbally.

Cant wait to see what the Speech Therapist has to say about that this coming week when we see her!
And again we must say a BIG THANKYOU to TasPorts for flying us to Sydney for Veronika’s 1st appointment to have her assessments and measurements taken for her second skin, and also to Cerebral Palsy Tasmania for funding Veronika’s suit.

SailAbility

Published 13 March, 2012 | By Kylee | Edit

 

All ready to set sail….

Sunday we had a family day with Down Syndrome Tasmania Southern Families, at SailAbility. What a fabulous day we all had. They took the two bigger boats out in the morning, while others went on the smaller 2 seater boats. Then we had a BBQ lunch, and after that we went out sailing again.

Veronika’s oldest brother Jordan heading out in the 2 seater boat.

I was amazed how well the day went. It’s fantastic that there is something that we can do as a group that suits all our members of Down Syndrome Tasmania and all their different abilities and across the age range.  We are all there to support and encourage each other, and we as a family are Blessed to have such a supportive group of people around us.

Thankyou to Down Syndrome Tasmania and SailAbility for a wonderful day….cant wait to sail again one day!

Childcare

Published 2 March, 2012 | By Kylee | Edit

Last week I took Veronika to the Childcare centre she is going to start at in a couple of weeks. She was so excited when we pulled into the car park. We have been there a few times in the last couple of months to pickup forms, drop forms in etc, and Jakob my middle child went there for almost 3 years, so I think Veronika might of even remembered when we used to go there every week to drop Jakob off or collect him.

So we pull into the car park, and as I unload the walking frame out of the back of the car Veronika is getting impatient…..I get her out and stand her in the walking frame, and then put her sun hat into the basket we have put on the back of it. I said to her to wait, while I get her lunch bag.
Patience is not Veronika’s strongest attribute……
I grab her lunch bag, and go to close the boot, as Veronika races across the car park to the gate, as fast as I have ever seen her go in her walking frame, her tiny legs could hardly keep up as her upper body was leaning so far forward. I was sure she was going to end up on the ground in the car park, as this was the first time she had taken off without me either holding onto the back of her walking frame or standing in front of her ready to catch her….but no, she got to the gate and gave me the old ‘hurry up and open the gate’ look.

I open the gate, and Veronika went thru, and continued towards the door of the childcare building, going as fast as she possibly could, the furthest she has ever been in her walking frame. She was going great, until she reached the incline up to the front door. This is where I had to hold the back of the frame, and encourage her to continue. She of course being the determined girl she is, didn’t need much encouragement, or maybe it was the fact that Pauline(one of the ladies that works there, who was so excited when I told her recently Veronika was going to start there soon), had seen Veronika coming and was standing at the top of the ramp cheering for Veronika……which in turn 4-5 boys who were inside came out to see what Pauline was making so much noise about!
Veronika made it up the ramp, with minimal assistance(I was extremely proud) and inside the door. We were there……she sat down out of her walking frame, pretty much exhausted, and went over to where some girls were playing with puzzles.

Soon after that it was time for outside play, so off outside we went…..Veronika had a lovely time climbing up onto the play equipment and going down the slide, head first of course!

That was until she saw the water play…..and well lets just say after Pauline put more water in it for Veronika, she managed to saturate at least 3 others as well as herself!

It was then time to go inside, and get dry clothes before mat time….during mat time, Veronika and I showed everyone some basic signs that Veronika uses the most to communicate. She then had morning tea, and after that we went. It was all in all a great orientation. All the staff are lovely and were full of questions about what they will need to do for Veronika while she is in their care. I know that when she starts (hopefully at the end of this week), she will be fine….I on the other hand…..

Fun family day at the Hobart Regatta

Published 14 February, 2012 | By Kylee | Edit

For those of you who missed The Mercury(our local newspaper)



http://www.themercury.com.au/article/2012/02/13/300651_tasmania-news.html