4 years, 3 months, and 2 weeks of therapy = a whole lot of tears

4 years


3 months

and 2 weeks ago

we began a roller coaster of therapy sessions….

why

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…

 http://youtu.be/78FpDQaqswQ


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..

RPAH Failsafe diet….and Veronika’s intollerances

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.

Hoping to find Veronika the right voice.....

Today we went to see the communication specialist...in the hope of finding a way Veronika can communicate, the next step in her transition to school in preparation for next year....

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

http://itunes.apple.com/us/app/touchchat-hd-aac/id398860728?mt=8

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.

Veronika’s Entourage

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,

Veronika's first MRI...age 1 week....they didn't need to sedate her for it, as she really didn't wake up for the 1st 2 weeks of her life...

tiny Princess in such a big machine...

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….

Penelope Purple and Celebrating Young Carers…

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.

Willow, Veronika and Susannah

Michelle reading Penelope Purple to all the children…thats Veronika you can see with the pig tails and curly hair ties. Michelle asked the children who loved purple and Veronika put her hand up!

 A sea of Purpleness

Then today, we celebrated Young Carers, FESTofALL, and all that our Young Carers do. My boys Jordan and Jakob(also known as Hotdogz) do so much to help with Veronika and all her therapy. They have  missed out on going to things in the past because Veronika has been unwell(either at home or in hospital).

They often entertain Veronika and help her with her therapy, they are patient with her while we are out and she wants to use her walking frame.

and today was all about them….this morning they went to Gold Class at the movies to see Brave with Tascare. They were so excited to sit in the big comfy chairs, and have a drink and popcorn delivered to them…

then we went to ZooDoo….Jordan and Jakob had a fabulous time along with their friends Julie and Sissy(Veronika’s best friends sisters). 

There was so much fun to be had.

 

Jakob

 

Jordan…

There was lots of animals to see

Jakob feeding the tiger!

 Jakob and Sissy

 Jordan and Julie

                                                                                                      

Jakob wanted to be a white boxing kangaroo!

We want to say a big Thankyou to FESTofALL for a wonderful day, its fantastic that our children can had a day of  just being kids. Was super special to spend the day with my boys while Veronika had the day with Oma and Grandad.

Veronika continues to amaze me...

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….

Remember Veronika can barely use her left hand for anything, it is not functional by any stretch of the imagination….this is what happened

Veronika's 1st time with a hand splint 

This may just be one of my Proudest Mummy Moments yet…

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….

Without hand splint...then with

I have done a little without the hand splint, then with the hand splint video…Veronika can reach further and higher with the hand splint on, and her releasing the object is just so much more fluent….

Frustrated much....

Yep I am…..today I am finally at the end of my tether with the system.

I believe my baby girl needs a 10-12 week block of weekly speech therapy.

Why…..

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.

 

There she is with her new bowl and spoon, just got to get her to hold it properly!

and she doesn’t talk….well she says ‘Mum’ and ‘No’.  She has a few other words, but no one else knows what she is trying to say. So you could say I am her interpreter, not that I mind as I do love her to the moon and back…and she uses Auslan, but because she has hemiplegia she has her own way of signing because she can’t use both hands, so until you know how she ‘says’ things in Auslan, then you don’t really know what she ‘s signing, that’s if you even know Auslan to start with….

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…..