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, April 28, 2012
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?
Thursday, April 26, 2012
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)
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...
Monday, April 23, 2012
Monday, April 16, 2012
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.
Wednesday, April 11, 2012
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!
yellow food colour
capsicum(all 3 colours)
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…..
Friday, April 6, 2012
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.
Sunday, April 1, 2012
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,
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…..
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