What a busy week.....ending with a weekend away at Down Syndrome Tasmania Family Camp

Our Family had a lovely weekend away at Down Syndrome Tasmania Family Camp. It was a long drive there Friday(around 4 hours), Jordan, Jakob and Veronika all behaved really well in the car. There wasn't even the usual arguments from the boys, they talked and played games. We stopped at Anvers and treated ourselves to Hot Chocolates, which was about 20 minutes before our destination. Veronika was spoilt and we got her a babycino, she doesn't always get one as she shouldn't have dairy, and she had a piece of fudge. We did however pay for it that night, as she had a belly ache and didn't want to go to sleep. It didn't help that I forgot to take her teddy bear that plays music, that she has every night.

At dinner Friday night, we met up with friends we made last year at camp, and met people who hadn't been to camp before. Over the weekend we were treated as there were child carers to look after the children, which meant that we were able to listen to the guest speakers. There is so much information out there, and its always important to share what we can. It was amazing how well all our children played together. I don't think there were any fights. I was extremely proud of Veronika. At last years camp, when she went to childcare, she would cry so loud that I couldn't even leave, this year, when I took her in, she played with some other children her age, and it wasn't to about an hour and half later that she became upset.

Saturday night our BrightStars Dancing group were to perform. The north west group taught us southerners a new dance in the afternoon, and everyone picked it up really well. Veronika fell asleep during the practise! As our southern Tas BrightStars group only just started late last year, it was our 1st performance. I danced with Veronika, and as she isn't walking, she was strapped into her pouch on my side and we had a great time. Its so special that even thought she cant walk and dance, she isn't excluded. Veronika loves the music, and smiled and laughed the whole way thru the 2 dances we did.

 

This is Katie, Freya, Veronika and Me(Kylee) after our dancing at DST camp. Freya is one of Veronika's Best Friends. Isn't she just too cute.

And now to share some pics of our week last week.....I took Veronika to play with Willow, her BFF on Monday, and Sally had made Veronika a Super Girl cape too.

 V for Veronika and W for Willow

I asked Grandad to cut the legs off the easel as Veronika cant stand at it to use the chalk board. Now she loves to sit and draw. And not to be surprised the boys have decided that they want to use it again too, and its too short for them!

What a busy week, along with the starting to organise the fundraising for "my Little Project", Veronika's Hydrotherapy spa, we had 6 doctor and allied health appointments over the week, so I really needed the weekend away! Thanks again everyone for your support of our beautiful Princess, and don't forget to come to K&D Glenorchy this Sunday 6th March, and buy a sausage from our sausage sizzle, the beginning of our fundraising, Please!

Thankyou, Thankyou, Thankyou....No really THANKYOU.

Oh my goodness, What a week. What started our as my latest blog post, about my little project, to get Veronika a hydrotherapy spa, to give her every chance to walk, starting off with a BBQ at K&D Glenorchy and then thinking about what to do after that.......

My friends, my community, has embraced my little project. I am speechless, and for those of you that know me, that NEVER happens. Words cannot express how i am feeling, overjoyed, elated, blessed, almost in tears of joy. I think one of the most important things Veronika has taught me is its OK to ask for help, and its OK to accept help when offered. The "no you don't have to do that", is now, stop, think, breath, "THANK YOU that would be fantastic/awesome/a huge help". It is very humbling to ask for help and even more so to accept it.


SO A BIG THANK YOU, THAT IS AWESOME.

Please keep Saturday 28th May free. A kids show is planed for the early afternoon(1-3) and an adults one for the evening. Sallyanne what started out with an idea from your beautiful girls has become something i never could of imagined in a million years. Sally called in a favour from "Magic Bob" as her daughter Willow would sign, and he read my blog on Veronika Anne and posted it to his facebook, and shall we say the rest is history. Sally, Bob, Hobart, Tasmania and beyond, you are amazing. I don't know how i ever will be able to thank you enough for your support of my beautiful Veronika, I pray that thanks enough will be when Veronika Walks and you will all know you had your part to play in it. I look forward to the day we raise enough to get her that Hydrotherapy Spa she needs, she will then be able to have a hydro session daily, her muscles will strengthen.....and one day Veronika Will Walk, and I am sure there will be a lot of tears that day. I am almost in tears now, as i write about it.

This week has been one of the busiest medical appointment wise we have had in a while, 3 yesterday, 2 the day before and 1 the day before that. Today i had a day off and went and watch my boys in their school swimming carnival. It was wonderful to spend the day with them and not be looking at my watch, because I didn't want to be late for Veronika's next appointment, these days don't happen often enough. My boys are just the bees knees, they adore their baby sister, and I love them so much too.

My mind is racing, it has been wonderful to meet Bob, and for him to tell me about his ideas for the shows, for all the support his friends are throwing behind Veronika Will Walk. I am at the same time really tired, its been a big week appointment wise, ideas wise, and emotionally.  I am wondering if i should even post this tonight, will any of it make sense!?!?

On another note, we got a letter from the hospital yesterday with a date for Veronika's next MRI(May 17th), the one the baby neurologist and the paediatrician requested. SO now I think, do I really want Veronika to have another anaesthetic? Well yes i guess that will be OK. Maybe I should call the paediatrician and ask her if we can book a hearing test for the same time, as I have been told by the ENT specialist the only way to get an accurate result is to do one while she is under an anaesthetic. Maybe I should put that on my to do list! Today we got another letter from the hospital, for her orthoptics and ophthalomology appointments, for next month. Now I am praying that there is no problems with her eyes, i mean i don't think there is, but then i didn't think there was any issues with her hearing, but she failed that test miserably.

I think that's all I have for now. I must go get some rest.

My Little Project....

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'.

I guess at some point after maybe 2 weeks of crying, the later was the one I decided to make. Yes it had been a really hard journey up to that point. We knew Veronika had a massive stroke before she was born. Still don't know what caused it to happen, and never will. Being told she might not survive her birth. Then when she was born being over joyed she was alive, having a quick cuddle, and then watching as she was taken off to NICU. Only to find out very soon after that, she had Down Syndrome. Then watching as she was taken for her 1st MRI at 1 week old, they didn't need to sedate her to keep her still, she didn't really wake up until she was about 2 weeks old....

YES MY PRINCESS WILL WALK. That thought passes my mind frequently. Our goal is that she will walk into her 1st day of kinder. A realistic goal, I believe so, and yes a lot the Doctors and Allied Health Professionals we see think it is a realistic goal. And believe me, she sees a lot of Doctors and Allied Health Professionals.

So what next.

I have decided that Veronika needs a hydrotherapy spa at home. WHY? Veronika has extremely low muscle tone all over. She also has times when she has high muscle tone down the left side of her body, a result of her brain injury/Cerebral Palsy. Now in a perfect world, you could be forgiven for thinking that if she has extremely low muscle tone, and high muscle tone down her left side of her body, shouldn't that balance out and she should have 'normal' muscle tone. Well unfortunately the world isn't perfect, so no that isn't the case!
Hydrotherapy is a wonderful therapy for children who suffer low muscle tone, and for children with high muscle tone. Veronika is learning to stand in the pool, as the water supports her and makes this skill easier to achieve. IF she can stand in the pool, then we can start to work on getting her to move around on her feet in the pool, then eventually walking in the pool, as its much easier in the water, than on 'dry land'. Veronika has an awesome team of Doctors and Allied health professionals looking after her:

• our family GP
• Paediatrician
• Physiotherapist
• Occupational therapist
• Speech therapist
• Allergy Clinic and Dietitian
• Brain Injury Rehabilitation Specialist
• Cardiologists 
• Paediatric Cardiac Surgeon
• Baby Neurologist
• Eye Specialist
• Audiologist and ENT specialist
• Foot orthoptist
• as well as going to Early Intervention

So YES I am busy! We average 4 or 5 appointments a week, and as Veronika has low muscle tone she tires quickly and we cant go to hydrotherapy on days she sees the physiotherapist, occupational therapist or has early intervention. Thus we only manage to get to hydrotherapy once a week. And Yes ideally Veronika should be going a lot more often than once a week. So my little project is to fundraise so we can get her a hydro spa for at home. I have got a quote for a suitable spa, and yes they aren't cheap! We are looking at $5500 for the spa, and then more for a concrete slab to put it on, as well as a fence to meet council safety requirements. SO where to start. I have managed to book in for a fundraising BBQ at K&D on March 6th. I am excited as I begin this challenge, I am giving myself 6 months to reach my target. Stay tuned to see how it goes!

Back to the normal routine.....

Well our boys Jordan 8 and Jakob 6, have been back at school for 2 weeks, which means that Veronika and I have gotten back into the swing of the usual 4-5 Doctors/Allied Health Appointments a week. I try to slow it down over the school holidays as much as I can, so I don't have to drag the boys to all Veronika's appointments! Don't get me wrong, we still have 2-3 a week, but its so hard for them to stay quiet, maybe a combination of being boys and its not all about them while I am talking to the Doc/allied health person, so they tend to misbehave a little.

Two weeks ago we went to the foot orthoptist and got Veronika's foot orthotic for her right(good) foot. As when she is standing at the couch her right ankle is collapsing. Her left foot has had an AFO(ankle and foot orthotic) for around 6 months and it is really helping keep her foot in the right position. Well  I have found it really hard to get the foot orthotic over her right foot, as it seemed really tight, and to get it on correctly was a 2 person effort. So when we saw the foot orthpotist today, she agreed, and went off to heat it up and stretch it. Then she came back, put it on her foot again, had a look and went off to heat it up and stretched it again, and then cut a bit off. When she came back she had a look at it, and said, "you know what, I think I am just going to start again, I just had a look and I still have her plaster cast." I was slightly relieved to know that it wasn't just me that couldn't get it on to Veronika's foot. So we will be going back in 2 weeks to get a new foot orthotic!

My Little Climber.....

Miss Veronika has learnt to climb! She climbed onto the couch all by herself in late January. I was and still am one very HAPPY Mummy. I have to admit it was one of the proudest moments of my life. She has been managing to pull herself to stand up at the couch for a couple of weeks before she decided that one day she could have a go at getting herself all the way on to the couch.
You should of seen the DELIGHT in her face when she settled into the couch. She gave herself a little clap and a cheer. Then I gave her a BIG clap and a CHEER. Coming down was not so glamorous! Head 1st. Now I know I cant wrap her in bubble wrap, but I do have the niggle in the back of my mind that kids with Down Syndrome can give themselves spinal injury from sudden impact. Second time she came down, again head 1st, but she did put her arms our to brace the impact. Third and fourth times, she just layed down and rolled off the side of the couch, and then she figured out to turn around and go down feet first. Another Proud moment, Veronika has figured that one out all by herself, clever girl.

 Getting Started!

Getting that leg up....

Almost there....

That was hard work. But I made it....

Did you notice that Veronika has new SHOES! We saw the orthoptist a coulple weeks ago, and she made Veronika a new foot orthotic for her good foot(her right one). Now that she has started to stand up her ankle is collapsing because of her extremely low muscle tone, and she is standing on her ankle bone rather than on her foot. The type of orthotic she has, means that she has to wear it under shoes. We have been using it for about 15 mins at a time, as she needs to slowly get used to it, and also to check that she isnt getting sore spots on her foot from it. So far its not too bad, but I think that when we go back for her check up with the orthoptist this week, she might need to heat it and stretch it slightly as its a bit tight across the top of her foot. Her shoes are a  little bit big, as its really difficult to find light shoes. Veronika cant wear heavy soled shoes because of her low muscle tone. I went shopping at the shop I got the boys school shoes from, as I was talking with the lady there about shoes and orthotics.I picked out a nice lite pair of shoes, and got her feet measured, her left foot is a size 3, her right a 3 and a half. Hmm that shoe starts in a 5. Of course it does. Oh well the AFO she wears on her left foot measures a size 4 so she is probably going to need a size 5 anyway. So all in all its slighlty too big, but the foot orthoptist said it should be ok as Veronika isnt walking around it them. You wouldnt think it was that hard to find light suitable shoes!

Answers or more questions?!?!

We met with our Paediatrician the day after my last post. So much has happened since we last met with her 3 months ago.
We had our trip to Melbourne for Veronika's heart surgery, last November. The surgery that never happened, because Veronika's heart is beginning to heal all by itself, a BIG answer to prayer. We are heading back to Melbourne in May for another check, to see how things are going, and hopefully she still wont need the surgery.
Then late November Veronika had a hearing test which she failed. They audiologist tried to tell me that she couldn't hear at all in 1 ear and  the other had partial hearing loss. I didn't agree, and when we saw the ENT specialist 2 hours after that, he agreed with me. Both her grommets were still in, and he thought they might fall out in the next 2-3 months, so has re scheduled an appointment for around 6 months time, and may redo grommets if necessary and while she is under the anaesthetic he will do a hearing test then. Apparently that's the only way to get an accurate result.
I also talked to her about the letter we got after seeing the baby neurologist. She has said not to worry and explained the BIG medical words that I was concerned about. Mainly to do with the nodules around the ventricles. She has recommended that Veronika has another MRI of her brain around the time of her 3rd birthday, which is in May. As it will be 2 years since her last one, and she agrees with the baby neurologist that it would be worthwhile to see if there are any changes.
We also talked about Veronika's diet(or lack of eating) and I went through with her what the Dietitian has recommended.  I have been concerned that Veronika wont drink anything but her formula, and when we have tried to cut that back to make her hungry, she doesn't really eat anymore than she would normally. I reduced the formula for a week, and then because her fluid has been  reduced, she stops using her bowels for around 3 weeks, and understandably she gets quite grumpy. She said not to worry about reducing what she eats/drinks and she thinks that when Veronika is hungry/thirsty she will hopefully start to eat/drink more and a variety. Well as much as a variety that you can have whist avoiding wheat, gluten, eggs, dairy, soy and rice milk!

Overall her Paediatrician was really happy with Veronika's progress. She was amazed how much she has grown over the last 3 months, and how much stronger she has become. She has arranged for us to see her soon after the MRI she will schedule, and the trip to Melbourne to see the Cardiac team which is also in May.

So I think I have some answers to questions, and maybe some more questions......