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’.
Wednesday, August 29, 2012
and 2 weeks ago
we began a roller coaster of therapy sessions….
as most of you know, Veronika suffered a massive bilateral stroke before she was born,
it SHOULD of killed her, we were told, it would have killed any adult…..
Veronika had her 1st brain MRI when she was only a week old….
and the results were devastating….
“Veronika has an injury to the area of her brain that we believe will affect her movement down the left side of her body, and she will NEVER walk”….
the conversation I had that day with the NICU doctor, is as clear in my mind as if it was only yesterday….
I was shattered, it wasnt FAIR that Veronika had not only Down Syndrome, and a congenital heart defect, that we were told needed open heart surgery to repair, along with severe hydrocephalus(swelling around the brain) that they were trying to decide if she needed urgent brain surgery to insert a shunt to drain the fluid….
now she was never going to walk, and Veronika was only a week old….
the physio had already started….the physios came and saw Veronika every day she was in hospital when she was born(almost 6 weeks)…
and the physio continued….and continued
after I was given the devastating news, I cried for 2 weeks….
then decided Veronika would walk….
and my goal, she would walk into kinder on her 1st day of school….
…yesterday we went to see Veronika private physiotherapist Lewina,
Lewina’s goal for the therapy session was for Veronika to sit on the chair, stand up, stop and TAKE A STEP….
6 weeks ago when we saw Lewina for Veronika’s therapy session, Veronika could manage the sit, and the stand….
so this was a HUGE goal…. one that Lewina and I both BELIEVED to be possible…
there were a whole lot of tears 4 years, 3 months, and 2 weeks ago
and yesterday there were a whole lot more….but yesterday they were HAPPY tears..
Saturday, July 28, 2012
About a month ago, at Veronika’s regular visit with her dietitian from the hospital at the hospital…she decided she wanted me to try the RPAH Failsafe Diet, because we have tried everything else in an attempt to get Veronika to eat….
FAILSAFE stands for Free of Additives, Low in Salicylates, Amines and Flavour Enhancers.
I then spent the next 2 weeks trying to get my head around the new restrictions I needed to implement, not only was the list limited for the initial stage of the elimination diet, but I also had to take into account all Veronika’s food intolerances, so not only did in need to eliminate so much, then I had to take out dairy, soy, eggs, gluten etc….so I talked with Elisa, a wonderful friend of mine who has used the RPAH diet before with her children to help with skin irritations. Elisa was an absolute wealth of information, and I went home after talking with her with a clearer idea of a food plan, and of course Elisa had a jar of pear jam for Veronika too(pears are the only fruit you can eat on the strict elimination diet).
I had come up with a rough idea of what Veronika could have at each meal and snack(well to be offered, because she has never really eaten anything much). Veronika refused her breakfast for the 1st week, I alternated between orgran custard made with her formula, and home-made gluten-free bread….after a week I was wracking my brains trying to think of something else to offer her. I thought maybe i could adapt a muffin recipe to be gluten, dairy, and egg free…so I made pear muffins, and she ate half a mini one for breakfast….I was so excited that Veronika had actually eaten something, so for the last week she has been eating pear muffin for breakfast. I have been making potato and leek soup for tea(and some times she has it for lunch too)…and I also made up a recipe for chicken ‘fingers’ with chicken breast that I minced with pear, celery, potato, then I added potato flour and rolled them in rice crumbs.
I feel like I have spent all the time that I have been home, in the kitchen making up recipes or modifying recipes……
but if it works and Veronika eats then it is so worth the effort. We have another 2 weeks to go, but I am confident we will get thru the 4 weeks that the dietitian wanted her to try Failsafe for….then we will back to see her and tell her the results.
Monday, July 9, 2012
well our appointment went really well....what we were basically trying to find was a suitable way using technology that Veronika can use to communicate. Veronika only says a few words consistently(Mum, up, more and no), we have been teaching Veronika Auslan sign language(I started when she was around 6 months old, but it took well over a year before we got one back from her) and now Veronika would have 80 + signs she uses often putting 2 together (eg more + chocolate).
But because Veronika has Down Syndrome and Cerebral Palsy left side hemiplegia, her signs have been modified by her to accommodate her left hand, and thus there are less than a handful of people who can actually tell what she is signing.
At the same time, Veronika is very good at answering questions with a yes or no answer, by either nodding or shaking her head, or if it's a really definite no, she will say no, likewise if it's a definite yes, she will say yea.
So the aim of today was to find an app for Veronika's iPad that she can use to communicate with when she is in kinder next year, and we want to make sure there is enough time teach her how to use it. The communication specialist we saw specializes in communication with technology, using various devices as well as iPad. We decided that the iPad would probably be the best for Veronika considering she already has one. He was also very impressed with how well Veronika can navigate her iPad, and how accurate she is with her fine motor skills at touching the right part of the screen, even when the button is quite small.
We looked at quite a few apps, and how complex they could become...and decided that the one touch = one word would be most suitable for Veronika and the level she should be capable of. We are thinking about a minimum of 50 icons, but possibly 70 on the page with core words, then an option for 'fringe' words that she can use to expand on. There was one particular app that looked really good Touch Chat HD
The aim is that at the moment as an example is that Veronika can sign 'more' then 'bubbles'....but with the use using her iPad as a communication device, we can start to teach her sequence patterns, so instead of signing 'more' + "bubbles', we can teach her to use the iPad to say 'I want more' and then hopefully 'I want more bubbles please'. Teaching her some sentence structure.
So the next step is to borrow an iPad off the communication specialist for a few days, to see how well it does suit Veronika, before we go and spend that kind of money on an app that might not be suitable. Its great that there is the option to do this, as communication apps aren't cheap and we need to make sure it's the right one.
I know that Veronika has a lot to say, and I belive that she will talk at some point. But in the mean time this should hopefully reduce some of the frustration that she is experiencing when we don't know what she is trying to 'sign' to us.
Tuesday, June 26, 2012
This morning Veronika and her entourage(Me, her teacher from ECIS, her physio, Occupational therapist, and a OT student for good measure) visited the school Veronika is going to for kinder next year, to meet with Principal this morning….to see what needs to be done to make the school ‘Veronika friendly”…..Mummy is feeling incredibly overwhelmed, but very Blessed at the same time to have such a great team supporting Veronika’s transition to school….
…way back after Veronika’s first brain MRI at one week old, when we were told Veronika would never walk, one of my 1st thoughts was she wouldn’t be able to go to the same school as her brothers, because it’s on the side of a hill, and there are stairs EVERYWHERE….
and by EVERYWHERE I really mean EVERYWHERE…
every corner we went around, yep there is another set of stairs there too….
Veronika has been using her walking frame heaps. She is getting so much stronger, her endurance is improving every time she uses it….
but we all know walking frames weren’t designed to go up stairs(or down them for that matter), or across grass, or across pine bark….
but yes we are very Blessed that Veronika has such a great team supporting Veronika’s transition to school. There is SO much to think about, and work through…mobility is only ONE part of it…
but as I said, just over 4 years ago when Veronika had her 1st Brain MRI when she was only a week old,
to see what had happened and what the results were from the stroke she had before she was born….
and we were told she would never walk….
after my 1st gut reaction of ‘that’s not fair, why can’t she just have down syndrome, why does she have to have brain injury as well….why are you saying she will not walk….because thats not fair….its not ok for Veronika to have a duel diagnosis…..its just not fair…..’
after my 1st gut reaction…..my mind raced to ‘but she wont be able to go to the same school as her brothers, because it’s on the side of a hill, and if she can’t walk, well how can she get around a school on the side of a hill with stairs EVERYWHERE’
a LOT has happened over the last 4 years….
but Veronika will go to the same school as her brothers….
and I am completely overwhelmed by the work that needs to be done to make this happen…
and my goal as it has been since that 1st brain MRI,
Veronika Will Walk into kinder on the 1st day of school in February next year….
my goal that I have had for the last 6 months or so, was that she would walk in without a mobility aide….
it’s still my goal, even if she will use her walking frame up to 1 step before the door, and just take 1 step thru the door way….it brings tears to my eyes just thinking about it…
I know there are a lot of people who will be just as proud of Veronika as we will be, on that day in February 2013….
There are a lot of people travelling this journey with our family….and for that I am grateful.
Dont take for granted what your children are capable of…if they can talk be grateful, if they walk be grateful, if they eat be grateful….if they can do all 3 be even more grateful….but most of all NEVER underestimate what your child is capable of….
If we had of given up those 4 years ago, and thought oh well they say Veronika won’t walk, why bother trying….well I just can’t even think about it….
lets just say never ever give up hope, anything is possible….
Sunday, June 24, 2012
What a fabulous weekend we have had…
Yesterday Veronika and I went to a book launch…. Penelope Purple by Michelle Pears.
It was a Purple Party to celebrate the book launch…a room full of Purpleness and Happiness
We had a great time there with Veronika’s best friends, singing and playing games, and of course the official reading of Penelope Purle.
Saturday, June 23, 2012
This week Veronika has completely blown me away. Veronika had an appointment with Alison her OT. Alison fitted a hand splint to Veronika’s left hand, the hand that she could barely use for anything…..we were sitting at the table to do some work with Veronika on her fine motor skills….Alison fitted the splint(after she cut it down because Veronika’s hands are so little) and then we played with one of the toys where she had to put the little men into the block.
We were both completely amazed at what happen next…
In fact Alison had to go and get the video to record it….
I still can’t believe how Veronika managed the new skill within a few seconds of wearing the hand splint. I also must apologise to everyone that I have made watch the video over the last few days…
actually I’m not going to apologise for something I am so proud of….
Sunday, May 6, 2012
I believe my baby girl needs a 10-12 week block of weekly speech therapy.
She basically doesn’t eat…… Dont get me wrong. She eats crackers and biscuits, drinks her prescription formula from a bottle because she can’t manage to drink from anything else. She eats about 2 tablespoons of yoghurt for breakfast(that’s as much as she will eat), but she isn’t really meant to have that as she is intolerant to dairy.
but seriously how hard does it need to be to get what she needs……
Miss V deserves better therapy….or at least some therapy would be nice…..
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
Sunday, March 25, 2012
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!
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.
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.
A funding application was made to Cerebral Palsy Tasmania, and they granted her application to pay for her Second Skin *insert Happy Dance from Me, to Cerebral Palsy Tas* in December last year.
The lovely staff at Second Skin said, if we could get Veronika to Second Skin in Sydney in early February, for an assessment and for measurements to be taken, then they would custom make her suit, and bring it to Hobart for us to have a fitting in March. Otherwise we would have to wait to March for the assessment and measurements, and would then have a fitting in May.
Me being me, decided that the 1st options would be much better. After all the funding for the suit was approved, and its something that I believe(along with her Physio and Occupational Therapist) will give Veronika better use of her left leg, because it will help with the stability of her pelvis. As well as better use of her left arm, because her core stability will be improved, helping her shoulder to become more stable, which should have the flow on effect to her arm and hand. So why wait another 2 months, when we could continue the ball rolling.
I made a phone call to see if we could get a hand to get to Sydney, as it was something Patient Transport weren’t able to cover, and we really couldn’t afford it. So I completely stepped out of my comfort zone and did something I never would have done before I had Veronika. I called Glen, who I had met last year at a fundraiser for Veronika’s best friend Willow. Glen works for TasPorts in Hobart, and they generously offered to fly Veronika and myself to Sydney for her appointment.*insert another Happy Dance*
Veronika loved the 2 plane’s we went on up to Sydney(we had to change planes in Melbourne). As soon as we landed Veronika was signing ‘more’, before she waved and blew kisses to everyone that was getting off the plane, while we were waiting for her wheelchair to come to the plane so I didn’t have to carry her!
Veronika’s Second Skin appointment was Tuesday at 10am. The ladies at Second Skin are just lovely. The therapist that we saw had some fantastic ideas for once we get Veronika’s Second Skin, and some of them we have already put into place, while we wait for her suit. We were at Second Skin for about an hour and a half, while we talked about goals for Veronika, and for her measurements to be taken.
My brother, Damo was in Sydney on a holiday, so he picked us up after the appointment. We had about 3 hours to fill in before we needed to head back to the airport. Damo said ‘you cant come to Sydney, and not do the tourist thing’(I hadn’t been to Sydney since my School trip in Grade 10, and I’m not telling you how old I am either!). Damo drove us to North Sydney where he was staying, and we decided to walk over the Sydney Harbour Bridge, and then along ‘The Rocks’, to around near the Opera House, where we stopped for a coffee.
Her OT was so super happy when we saw her this week. We have been using a pressure vest to help with her core stability, which in turn helping her left arm function a little better, because she isn’t having to work so hard at stabilizing her core. This all means that Veronika is sitting a lot ‘taller’, and standing a lot ‘taller’, because her muscles are supported, as well as she is getting much better function out of her left arm. We still have so much work to do, but it’s so encouraging to see how much difference something can make in conjunction with all the therapy we do at home too.
When we got the plans back from the Draftsman, it was one of the 1st things I said to my husband…..we need to put a toilet out there……what made you think of that was his reply…well I guess it just dawned on me, that she’s only 13kg now, and I can carry her quite easily, but when she’s 7 if she still isn’t walking, chances are Veronika will weigh a lot more than 13kg, and I had just had a steroid injection in my should because I injured it lifting her. So now the plumbing has been done in the slab, and we are going to have a toilet as well as a shower.