2010... The year that was...

2010 was a better year than 2009. Here are some of the positives that 2010 brought:

- Ellies seizures, even though still happening, where much more controlled in 2010

- Succesful grommit surgery

- A very succesful and fun filled day with "A Run for Ellie" (Thanks Jeff & Trace)

- Ellie started rolling from front to back and back to front

- Ellie can lie on her tummy for short periods and hold her head up

- Ellie received her hearing aids

- Ellie received her standing frame and can now weight bear for periods of up to 25 minutes in the frame and about 30secs - 1 minute without with us holding her arms

- Ellie started to eat textures such as risotto

- I fought hard to get Ellie into a program that originally wouldnt accept her because of where we lived

- Ellie got her second glass eye, that was suprisingly bigger than her first

- We have also got to met meet 4 families with children with WHS

- Ellie started Hydrotherapy

& Lastly my favourite positive..... Ellie has become so much more interactive, aware, smiley, funny etc... Her personality has blossomed in 2010 and I feel this has so much to do with her being alot healthier this year

2010 also brought some hard times which included:

- The discussion about fitting Ellie with a gastric feeding tube as we were struggling to get Ellie to put on weight, in fact for about 3 months she lost weight constantly. Currently her weight is 8.3kgs and her weight gain, though not massive, it is slowly increasing.

- 7 weeks of brochilitis in winter which pretty much kept us house bound, and brought on violent vomitting from coughin

- A hideous rash caused by a viral infection and a UTI, all which brought on some small seizures

With saying all that I truly feel that 2010 was a better year health & develpment wise for Ellie. I am also exicted about what 2011 will bring for Ellie as she is starting at CPEC in term 1 for their conductive education program and also starting at Bayside Special Development school in term 2 for their early education program.

My wish is that Ellie keeps developing and learning new skills as she has done in 2010.. Bring on a healthy and happy 2011

Thank you to all my readers... alot of the time I forget that what I write, people are actually reading. I appreciate all your comments and thoughts on what I post.... Thank you!!

Camera crazy!!!

Sorry for the overload, but we have taken heaps of pics lately. Mostly from our week away with Lukes family, and some of meeting another WHS beauty, Caitlin

Off on holidays..... YAY!!!

Just a short update to let you all know that we are off on holidays from tomorrow till the 28 December.

Luke, Ellie and I are going to visit Lukes family. So I probably wont be posting any updates. However ill be sure to post about our holiday and of course lots of photos when we are back.

Wishing all my readers a Safe and Happy Christmas!!!!

4P AUSSIE KIDZ Bank account set up

We can now cross off another job on our 'To do' list for 4P AUSSIE KIDZ.

Yesterday we completed setting up the 2 bank accounts required. One of these is just a ordinary account, and the second is labeled a gifting account. This will be required once we receive DGR status from the Australian Taxation Office, so if any one requires a tax deductible receipt, their donation will be required to be made to the gifting account.

(However in the mean time if you wish to make a donation you can still do so, we are just unable to provide tax deductible receipts. We are hoping to be ready to provide these early in the new year. If you would like the bank account details to make a donation, please email me at 4paussiekidz@gmail.com)

I really feel like we have come along way from when this was initially just an idea....

Dont get me wrong there is still alot to do, especially when it comes to organising our first 'annual fundraiser' for mid next year... But hey Im excited about that!!!

Dont know if I ever posted our finalized logo on the blog either, here it is:

Ellies plan for next year...

Some of you may remember a post I did back in August, (click here for that post) about a particular program that I wanted to get Ellie into, at the Cerebal Palsy Education Centre (CPEC). But her name could not go on the waiting list because of where we live, as they only take kids from the eastern region.

CPEC is a one of a kind in Victoria, this program is not offered any where else. I truly believed that Ellie would benefit greatly from this program, and didnt find it fair that kids with disabilities miss out on something so unique because of where they live.... so I took this battle on, and in the end she got her name on the waiting list, and Ellie wasnt the exception, they changed the rules and accept kids from all regions now.

Last week we receied a letter of offer for 2011. Thats right Ellie has got a spot at CPEC, starting in term 1. So every Monday and Wednesday from 9:30am - 12:30pm Ellie will attend the program with me. This is a family centred program, where I participate with Ellie. I am stoked about this as I have heard so many stories from other families and also in the media about the great work that CPEC can acheive with children.

The other good news is that Ellie has also received a place, starting term 2 at Bayside Special Development school in their Early Education Program.

This will be every Tuesday and Thursday from 9am - 2:30pm, this is a program for kids with special needs and focuses on development of communication, social and cognitive skills, and gross and fine motor skills in a play based environment. Bayside SDS has its own therapists such as Physio, OT, speech & sensory on hand to provide support to the groups.

I am unbelievably excited about what 2011 holds for Ellie, I am looking forward to Ellie attending both these programs as I think it will be massive for her development, I am excited to see how she will develop, it will also give Ellie more of a chance to interact with other children.

What this also means is that I will start to get a bit more of a break.... as I will have 2 days to myself at home without Ellie

Am I looking forward to this.... Yes...

BUT.... I am also nervous & scared and will probably be a blubbering mess in Term 2 when I drop Ellie off for her first full day at Bayside SDS. You see I have never left Ellie in childcare or occasional care etc.. I have only left Ellie with a handfull of people.... family and council carers.

I know she will be fine.... I know I will be fine.... I know that she will be taken care off and most of all.... I know that this is the best thing for her.

I may just need some kleenex next year.

Variety Annual Childrens Christmas Party

Wow!!! What a day. Ellie received a invite to the annual Variety childrens christmas party. For those of you that dont know who Variety are, they are a not for profit group that help kids who are sick, disadvantaged or who have special needs.

My mum, Ellie and I got into the city at 9:30am. This was our first time to attend the annual childrens christmas party and I have to say I was blown away. There was approximately 5000 people there, made up of children, parents, carers, teachers etc.

When we walked in you were greeted with a carnival like atmosphere. There were giant slides, jumping castles, face painting, alot of fast rides for the older children, slower rides for the littleies, animal petting zoos, santa visits, wheelchair basketball, fencing... etc etc... the list goes on. The also had performers singing and breakdancing. They also had free food for lunch and the coffee club serving free coffee.

With all this going on, you could imagine there was alot of people, lights and noise. Ellie was mesmerised!!!.

We got Ellies face painted like a cat. She wasnt too sure of this, she cringed every time he painted a whisker on her face... but the end result was toooo cute!!!

I also took Ellie on the tea cup ride, which she liked at first, but I think by the end she was very overwhelmed by it all.

I could not get over how well organised this party was and how many volunteers there were, everyone that was volunteering was happy and helpful. Without the volunteers this would be impossible, so they do an amazing job!!

By 1pm Ellie had had enough, and on your way out you collect a present. Ellie received a fantastic activity castle, which is a square activity centre... which I think she will love

Thanks Variety!!! By the amount of smiles I saw on the kiddies faces as I was leaving, they all had the best day!

Here are some pics of our fun morning!!!

Here are some extra recent pictures

Little does Ellie know that this 'fun' in the washing basket

is actually therapy... she LOVED it

Looking very grown up in a 'big kids' chair

Ryley, Rachel, Braeden, Ellie and Elliott

at our mini WHS catch up

Wolf Hirschhorn catch up

On saturday afternoon, Luke, Ellie and I drove down to Ballarat to meet up with 3 other families who have children with WHS. What a great night we had, there were the Dridans and the Sheens all who we had met before and there were also the Doecke's who we hadnt met before. There was alot of talking, and sharing things about what I kids did, do or certain things that help our kids. There is real comfort in talking to other parents who have been where you are. There is a real bond through our children. This is something that I cherish

It was amazing to see the children who are all older then Ellie, and who do so well. Some sit, some walk, and some even talk.... all things that the medical world said our kids would never do. Its nice to see that these kids are proving all that wrong. I hope Ellie also proves them wrong too.

The night ended with some challenges on the Wii... lets just say I have never played the Wii before and need alot more practice

Thanks to Anna & David for having us and hosting such a fun night. Nights like these make me even more excited about the WHS conference in 2011 where we will get to meet more parents and kiddies alike.

Plastic Surgeon update

This morning Ellie had a review appointment with her plastic surgeon. He was happy with how everything was looking. Ellie still has 2 holes in the roof of her mouth after her cleft repair, 1 at the back, which came undone not long after surgery and 1 at the front, where there wasnt enough tissue to cover the hole. He wanted to know if these were causing problems.

Problems?? Probably no... But discomfort yes.

As Ellie is starting to eat more textured foods, as she swallows, a fair amount is ending up coming through her nose, and sometimes getting stuck in her nose. That then leaves us with the horrible job of trying to dislodge leftovers from Ellies nose. So this is not a massive problem, Ellie just hates it when we try and get it out, and I have to admit it is a bit embarassing when you are out, and Ellie sneezes.... and yep you guessed it, this stuck food comes flying out

Ellies plastic surgeon is not to keen on repairing these 2 holes until Ellie is 3-4 years old. The reason being is he needs there to be more mouth tissue and for the tissue to be stronger. Apparently you only get 1 go at this surgery so we want to make sure it is done correctly.

With saying that, he doesnt want to see us for another year, then we will start seriously thinking about when to do the surgery to fix these 2 holes

Just some pics...

An open letter to all professionals - By Pia of 'The crack & the Light

Todays post is kindly borrowed from another blog called 'The crack & the light' By Pia, After I saw a beautifully written piece called 'An open letter to all professionals' on the 'Kidz' Blog

It just struck a chord with me as it rings so true. Enjoy!

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Neurology update

Yesterday we had an appointment with Ellies neurologist. His first words were when he saw Ellie was, "Mel she looks well, she has grown up" He also noticed how alert Ellie was, how she was using 2 hands to explore and reach out and how much stronger she was. It just reinforced everything that we too had thought. Ellie has changed alot of the last 4-8 weeks and it was nice to hear this from someone who hadnt seen Ellie in a while.

I filled him in on how Ellie was going 'fits' wise & that since her last meds increase the fits that we were seeing 4 weks ago are no longer, however she is till having a few questionable moments every couple of days.

As Ellie is on the maximum dose of both Trileptil and Kepra, are these questionable moments enough to change Ellies meds? I dont think so and neither did Ellies neuro. Yes she still has times occasionally where here eyes roll back, or her mouth does funny things. But they both are quick and not promminent long fits. So the risk to wean her off her current meds and to try new ones brings the risk of decreased seizure control. However if we notice that over time that Ellie is having more prominenet, frequent fits then we may need to look at new meds.

We dont need to be see Ellies neuro till March/April next year... that really is a sign that things are going well. YAY!!!

Swimming... well more like a dip in the hydro pool

This morning Luke and I took Ellie to the Monash Aquatic Centre - Hydrotherapy pool. At first once we got in the water Ellie wasnt so sure, but after about 10 minutes she some what enjoyed it. I wouldnt say she loved it, but I think in time she will.

Over the next few weeks Luke and I will keep taking her just to get her used to the water and moving in it. Once she is comfortable in the water, one of Ellies physiotherapists will hold a session with us in the pool showing some exercises that will help Ellie. The plan is then for us to take her a couple of times a week and about every 6 weeks, the physio will do a pool session and review what exercises she is doing.

Ellie looked unbelievably cute in her bathers, they were a 2 piece with little bottoms and a rash vest. Would you beleive we didnt remember to take a photo of her in her bathers or in the pool.... Oh well we will do that next time.

I have to admit, this morning didnt feel like therapy, or hard work on Ellies or our behalf. It felt like normal fun, normal kid like fun... which was nice!!!

I think ill like this pool thing!!

Ellie Update

Ellie has been doing really well at the moment, she hasnt met any new milestones, but she is slowly creaping closer to some. Lately when she is rolling around, she is getting her bum up quite high in the air, as if she is ready to crawl. Crawling is definately a long way off, but when she is in this position, if I help her with her hands and give her some encouragement, she actually lifts her head up from the ground by pushing up on her hands... This is massive!!!

We also saw Ellies dietician last week, and she is very happy with the 3 meals a day that Ellie is eating. She still wants us to keep her on formula, as she still isnt eating massive amounts of iron rich foods such as red meat. But she wants us to start giving more savoury meals at lunch to help this.

We are still working on trying to get Ellie to drink herself. Its not that its not going well, but its not going to great either. I just want Ellie to be as independant as possible, and hopefully able to drink and feed herself.

We also bought Ellie a friend, a 4 legged friend called Coco. I am hoping they grow up to be best of friends.

We also gave Ellie a hair cut recently, not a big one. We just had to tame the mullett that was forming and tidy the top... thank god she has a hairdresser for a mum.

Our little 'poser'