Princesses or Fairies...

My baby girl will be 4 in a couple of weeks, and she isn’t asking  for a Princess or Fairy or a whatever themed party…..she wouldnt even know its her birthday soon….

and I would have to say as a parent that’s not really fair….

Isn’t celebrating surviving another year worth celebrating in a way your child wants….

Isn’t a lot of the joy of celebrating, the lead up and excitement the child shows?

but is it fair to make the decision on how to celebrate for them?

to party or not to party, that is the question…

Of course we will celebrate, after all another year has passed….another year of Veronika’s life, a life that is so precious.

A life that at one point, 4 years ago we thought might not survive her birth.

4 years ago today, I was at my 36 week pregnancy checkup….just a routine check up as far as I was concerned. That day three little words completely changed my life

“are you OK?”

these were the 3 little words my OBGYN asked me, after he saw something on the ultrasound machine, froze the image on the screen, then went over and pulled his text-book off the shelf, and flicked thru it to he found a picture….

“yes, that(pointing to the ultra sound screen) looks like that(pointing to the image in his text-book)”..
at that point he called up and booked an urgent specialist ultra sound, that I was to have 2 hours later. He explained as best as he could, what he was seeing on the ultra sound screen, ‘some severe abnormalities in the ventricles in her brain’, but something he had only seen less than a hand full of times over his 30+ years of obstetrics, so he really couldn’t give me to much information until after the ultra sound.

I thought I was ok, I thought I had taken in the information he had given me, that was until he asked me
“are you Ok?”

…..lots has happened in our lives between then and now, too much to go into now….

Then there is sadness that your child doesnt really know it’s her birthday coming up……

the sadness that she isn’t continually asking for/telling me what gift she would like for her birthday.

The sadness of trying to figure out what to get her…

Its difficult to get something age appropriate because of her delays a lot of things 4 year old girls would ask for aren’t really appropriate for her.

Then there is the fact Veronika needs so much therapy equipment, so I think I could get her the rope and descender she needs for her swing, or make a start on the platform and climbing ladder(I want to start making her own  therapy room at home, with everything set up ready to go so we can work on her fine and gross motor skills), or that swing which also  help develop her core stability, or those puzzles for her fine motor skills….etc….

but what we get for her should be a Birthday gift not a therapy gift….

so that is my dilema….

what do I get for My Princess?

Taboo

What a day....I was privileged to be asked to share with my local MOPS(Mothers of PreSchoolers group).

This is from MOPS Australia webpage....

The theme for MOPS across Australia in 2012 is MumSense: Bold Loving Sensible
The theme Bible verse for the year comes from 2 Timothy 1:7 – God doesn’t want us to be shy with his gifts, but bold, loving and sensible. (The Message)

Developing a mothering strategy is somewhat like playing a game – and this year’s theme is appropriately game related. Have fun being a mum! Playing games involves being bold and taking risks, loving those in the game with us and being sensible while figuring out what works and what doesn’t.

http://mops.org.au/themes/2012-theme

I was asked to speak on the topic of "Taboo"...things that people don't usually talk about, Taboo subjects.
I had written down a little of what I wanted to share about: from miscarriage to some of my journey with Veronika. I just thought instead of writing too much, and risk reading off sheets of paper, I wanted to speak more from the heart....and well from the heart the Mums got, including tears. It's always an amazing experience to be able to share my mothering journey, and some of the Mums in the group I have known for years. So I guess I felt incredibly comfortable, and was able to completely open up, and share some of the raw emotions of the journey we have been on, in particular over the last 4 years with Veronika.

I somehow ended up talking about organ donation, and in particular organ donation of children(as I have met one of the most amazing little boys while on this journey, and somewhere down the track he might need to be the recipient of an organ donation, if he is seen as a suitable candidate to go on the transplant list). Organ donation is something that some people talk about, but something that we all really should discuss with our loved ones. But I had never ever thought about organ donation in respect to children, as well lets face it, that a Taboo subject. I obviously dearly hope and pray that we would never be in the situation where something has happened to one of our children....but.....well you know....

So it has been a pretty emotional day.

We are Blessed to have 3 perfect children, Jordan, Jakob and Veronika....

and I love them all to the moon and back...

National Disability Insurance Scheme

Click on the link to see Veronika's support message for the NDIS

http://www.youtube.com/watch?v=EuQiWPVM_Ak&feature=youtu.be

...as fast as she crashes, she recovers...

Friday morning Veronika woke up crying….she never does this. I got her dressed and we came out to the lounge room and I put her on the couch while I went to get her milk….she grizzled the whole time I was getting her milk ready, and then when I gave her milk to her, she was sick….the kind of sick that usually is the start of a chest infection…..

So I cleaned her and the couch up, and put her down again to make her brothers breakie, she continued to grizzle the whole time, and when I went to pick her up after making Jakob’s breakie, she had a mouth full of blood, I am still not sure if she vomited blood, or if she cut her mouth somehow….

So a trip to our awesome GP was in order. She couldn’t see anything that would be causing her to be unwell, so she gave us a script for antibiotic, just incase we needed it over the weekend. For the next 2 days I wrote down everything thing she drank, and her temperature when I took it, and when I gave her panadol….because I am one of those Mothers, that does this just incase we end needing an ambulance, a trip to the emergency department……you see the Doctors in resus seem to really appreciate if its all written down, and you can give it to them to read, instead of trying to remember….yes I am one of those mothers.

Saturday she was not better, but no worse….

Veronika having a swing with her frog

It was about this point that I thought I might be making a trip to our ED to rehydrate Veronika, as she had hardly drunk anything for 2 days….

Sunday was a new day, and Veronika woke up a whole lot happier….and by Monday I would say she was pretty much back to health. I find it amazing how fast Veronika crashes…..she seems to recover just as fast. Yay, we didnt need to make a quick trip to the Emergency department *touch wood*

And to leave you with a photo my friend Lucie put together for me last week

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

…..