28th January 2016
I first came across Living Dead Clothing when Madeline Stuart did some modelling for them last year. I brought myself a dress last year after Veronika’s surgery and every time I wear it I get comments on how awesome it is(I should post a pic in the comments)
Veronika was given some money for Christmas. Last week I was looking at the dresses and noticed they have some girls dresses. Veronika was sitting next to me and as soon as she saw this one she said ‘that one’ and then signed ‘ice cream’. I asked her if that’s what she wanted to spend her money on, and I got a huge ‘yeah’
26th January 2016
Having a sister that has high care needs means that a lot of my time is taken helping Veronika….today I spent over 2 hours(over the day) sitting, helping Veronika drink from her cut out cup to try and get more fluid into her….this is along with the usual therapy we do each day, plus all the ‘usual things’ with being a mum.
For me it’s important to grab some time with Veronika’s brothers when I can….so tonight after dinner Jakob and I went out for a bike ride. I’m working on getting better at making time to do things with the boys, either individually or together….and this is one of my big personal goals for this year. Last year was incredibly tough with Veronika’s surgery and rehab, which meant Veronika and I were interstate for over 2 months, and when we were home it was incredibly difficult to get out.
22nd January 2016
When pictures of Veronika pop up in memories….I usually stop and realise just how far my girl has come.
When the 2 pictures in the top row came up yesterday one of the things I remembered was how irritated and red Veronika skin was when she was little….we have worked so hard with Veronika’s dietitian over the years figuring out what Veronika is sensitive to….if her skin is red and irritated on the outside one can only imagine how her gut health is on the inside.
Tonight as I was reflecting on the journey with her food sensitivities I look at how healthy Veronika’s skin is now compared to when these photos were taken.
It’s hard work making sure Veronika’s diet is free of the things she reacts to, but when I look at these photos and see how her skin glows and is so healthy it’s worth the effort 💖
19th January 2016
This afternoon after our appointment we went to Hill Street Grocer to get some fruit, veggies and meat
I parked the car and turned and asked
Veronika is she was going in her wheelchair?….’no’
So I asked her if she was going to walk?….’yeh’
Are you going to have your own basket?….’yeh’
Veronika picked a basket on wheels(of course) and one for me to carry. Veronika kept trying to push her basket and I explained and showed her how she needs to walk and pull the basket….it took a while as each time we stopped she again went to push it.
We got the fruit and veggies we needed and went to the deli to get the meat….I love how the staff interact and talk to my girl, not at her or ignoring her but truly talking to her….they pass the meat to Veronika and she puts it in her basket….
As we go to leave the deli to go to the counter to pay, Veronika realised her basket was to heavy for her and showed me she wanted me to carry some of the things she had. So we put them in my basket and went and waited in line at the counter.
Life skills…..it takes at least twice as long to do the shopping this way, but this time is an investment in my girls future independence
One tiny word that packs a punch…..
Today Veronika saw her rehab specialist….
He came out to the waiting room where we were, and my girl stood up and took off walking up the hall…..and her specialist stood there, watched Veronika and said ‘wow’.
He hadn’t seen Veronika walking independently since her hip reconstruction.
We had her appointment, and as we got up to leave he said it was good to see us both and great to see Veronika walking so well….and Veronika walked all the way back to the car
My girl and this cup…..
At 7 years and 8 months old Veronika is getting the hang of drinking thickened fluid out of this cut out cup.
We have spent years(and lots of dollars)with therapists and every different type of cup, sipper cup, bottle, and straw made to try to get her to drink out of something other than her bottle and teat.
From when Veronika was a newborn in special care and we were trying to her her off the nasal gastric tube feeds, we had to use a special bottle called a haberman feeder. It was the only thing she could manage. She used that for months before we were able to transition Veronika to a regular teat.
Having dysphagia makes it hard for her, but I can finally see a light at the end of the tunnel.
Veronika hasn’t had a bottle for 7 days….a whole week!!!!
I’m spending an hour and a half to 2 hours a day sitting holding the cup for her to get enough fluids into her to keep her hydrated as she can’t manage to hold the cup yet herself, but I’m just so excited to finally be getting somewhere with her drinking.
It’s a huge milestone for our girl that we have been working on for years 😊🌟
I must say a huge THANKYOU to the gorgeous ladies Sue and Priscilla atMedela Australia for supporting Veronika on her journey…we have been buying teats in bulk at a discount from Medela for years because Veronika going through so many.