If I lived near family...

I haven't written for several months... I am not really sure why.
Maybe things started getting worse and I had nothing much to share except gripes.
Maybe our schedule started getting busy and I lost my rythym and it got sidelined.
Maybe I started using my phone more than my laptop and just kept putting it off "til when I turn my computer on"

The biggest thing over the last few months was: Nico had his first plane trip and Brooklyn had her.. 14th? It was our first family trip since Nico was born. (side note: our last family trip was in Sept 09. I was 4 months pregnant and blissfully unaware that a week later I would be in hospital and a month later we would have a son and our lives would be turned upside down forever)

We went to NZ to visit my family. We had a great time. It was a real insight into what it would be like if we took our current life and airlifted it to be right near our family.

Admittedly there would be several differences between our holiday and reality.
We would not be living on the ground floor of my parents house.
We would not get to go out most evenings after putting kids to bed.
Meals would not be cooked by my mum or sister every night.
We would have to go to work..
Our money wouldn't suddenly be "worth" 20% extra.

Things that would be the same however:
Mum / Dad / Sister / Brother would look after the kids occasionally
I could get Mum/Dad/Sister/Brother hugs on the tough days
Bananas would be affordable and I could have one every day.
I would have to drive my old little blue Pulsar which randomly locks and unocks the doors as you drive.

More to follow soon. If I don't post this now, I may never do it. Will add photos too

It Takes Two to Talk - The Hanen Program

A few weeks ago, I got a letter inviting us to enrol in a communication program called It Takes Two to Talk, developed by The Hanen Centre in Canada. It has been run since 1975 and is evolving continually. The program is not only for children with as severe issues as Nico but gets success across all bands of language delay.

Obviously for Nico, it will not mean that we have him talking in the 16 weeks the course runs for. We are looking at the broader meaning of communication for him: getting a message across.

At the moment we have the absolute basics of showing emotion from him; smiles, laughing, crying/ screaming and moving his head away from a bottle/spoon. He also makes good eye contact and will follow or look for but at this stage, I can't read any message in this. I know he understands a lot of words but I am not the best at gauging understanding as I don't give enough credit. I know that if I say anything containing the words "Brooklyn" "Mama" "Dada" "Cat" (or Veuve and Remy, our cats names) he will find them and smile. I am not sure about any more than that, except maybe a few other peoples names.

Today was our first day and it was just a basic orientation and meeting the other parents. Nico was cared for in another room by a family worker. I thought he would be the worker looking after all the other children from the program but was pleasantly surprised that it was a mainstream playgroup and the family worker was there just for him and the other kids had their mums. He was happy and giving lots of smiles.

We haven't set goals yet but I think I know what Nico's will be for this year. I imagine it will be to give him an understanding that what he does can get him something. For example, if he looks at an object, then at us, then at the object again, he will get what he was looking at. Ultimately a yes or no would be great too. It may not be a full nod or shake, but a single 'chin down' for yes and side to side for no could be a realistic expectation.

I am hoping one day in the not too distant future, he will have enough limb/ body control to get some more signs and the concept of words has not been ruled out either. Just not too soon. We have to live by the "hope for the best, expect the worst"  motto, or in our case perhaps "Hope for the most, expect the least"

Dear Nico - 21 months and Princess Brooklyn - 3y + 5 months

Dear Nico and Princess Brooklyn

Mama is too disorganised and busy with a gazillion appointments this past fortnight and the coming week to do two seperate posts.. so this month, you are combined and intertwined in my blog. Just like in real life.

The biggest thing to have happened this month was Nico's Toybox: The Auction. This raised about $2400 for us to ensure that you, Nico, get some more things that you need to make life better in whatever way. It was originally for toys but through the magnificent generosity of some dear friends Bec and Tom, and friend Renee's family members (Sandra and Jess), they were taken care of already.

Having had Saturdays free has been lovely. This past weekend we were meant to meet up with some other Nicu grad babies and families at Healesville but the morning didn't go to plan. Instead, later in the afternoon we went to a small but closer one. We got to hand feed kangaroos and Brooklyn, you were a celebrity with a group of Korean tourists. The moment they spotted you they ran over and were talking to you and asked if they could take pictures with you. They thought you were adorable too, Nico, and got you in on the action too.

It has been school holidays so a lot of our weekly appointments are off for 3 weeks; early intervention, swimming, dancing etc. I was looking forward to having a clear schedule but it turned out that all Nico's other appoinments were booked and we have been busier than ever running here and there; rehab, physio, case management meeting, HEN - Home Enteral Nutrition, gastro...


Brooklyn: "Mama, I wanna sna-a-ack"
Me:           "You just had some cheese and an apple"
(5 minutes later, runs in to me)
Brooklyn: "Mama, Upsy Daisy really needs a snack b'coz she didn't have any and she really wants some...umm.. crunchy bits"

P-plater car on the road as we are driving
Brooklyn to Holly  "We don't need a sticker on our car.... coz we are good at driving"

Me:          "Brookie, bath soon ok?"
Brookie : "Yep. I am gonna splash around like a handbag whale"
me :         "Ermm... Do u think u might mean a humpback whale?"

Letter from Friends

Keeping my words short as possible:  long letter attached.

The back-story in short is that through a newspaper artice, I found out the all the toys had been sorted for Nico before the Toybox auction started. The ladies advised me one person wanted to buy a toy outright and I found out after a few days that it was a friend's mum and sinster-in-law. I was lost for words, I doubt I said more than "OMG, how lovely!! Say thanks!!" and still haven't expressed my gratitude nearly enough. It arrived last week. Here is a pic of Nico with it.

Laughing at Elmo after dinner.

The other three, the only hint I got from the organisers was "It is a surprise. All I can say is you have some amazing friends" and I figured that many small cash donations had come in or a group have done a whip around and bought one.

So, as if I hadn't had enough tears over the last few weeks from being overwhelmed by kindness and gratitude... yesterday I got this: (I changed took out names in case they did not want to be identified. When I get confirmation, will change)


Dear Kazz and Geoff,

I'd like to start by saying that Tom and I have always thought you were wonderfully warm, kind and generous people.

How truly that has been demonstrated over the past 2 years when your patience and willingness to love has been tested more than most.

We have sat on the sidelines, feeling useless, wanting do to more but restricted by time, illness and distance, only being able to give a kind word now and then or a an occasional knitted gift or general encouragment. We always wished there was a little more we could do to help you all.

When I first saw your blog where you talked about Nico only having the toy on loan I knew immediately that giving Nico this toy was something I could do to help. Husband and I talked about it and decided we would give you the money for the toy.

However when 'Nico's toybox' came along I wasn't sure what to do, to let the auction go ahead or still give the money for the toys. The great thing about the auction was that they listed the toys he needed, and where to get them from. This allowed me to do some research.

I found out that all the toys are regular toys but they have just been modified to fit 3mm plug for the switch, and some have had additional modifications for things like stability. The 3mm plug modification are all done here in Australia, but toys with other modification are done in the U.S. I found out how to modify the toys myself to fit the plug (or get a sparky to do it - but it's a 2 second solder job), but further modificatons can't really be done at home.

In the process of finding out all of this I found out that the butterfly spinner, the air-tivity ball popper and the triceratops weren't available at Tec-sol anymore (gone for more than 6mths), nor where they available anywhere else in Aus.

They did of course have the big red twist switch which we bought and received weeks ago. It is here, all wrapped up for Nico.

I started looking overseas and was able to find the butterfly spinner and the air-tivity ball popper in the U.S at the company that modifies them and then on sells them to other companies such as Tec-sol. Only problem was, you needed to be a U.S resident to buy it.

Okay, new hurdle. Then I started looking into ways I could possibly have something shipped myself from there to here, supposing the company would agree to that. I stumbled upon the answer, and am now a proud resident of Connecticut!

So the company shipped the packages to Connecticut, and then they were shipped from there and are now on their way here (they are at Melbourne Airport customs now.) So I'm expecting them here early next week!

Next thing was to sort out the triceratops. Little harder as Fisher Price hasn't made them in about 2 years. After a week of watching Ebay (in all different countries!) and looking on other sites I finally found one new and in a box on Ebay in the U.S. But, the seller was away until the 7th of July, so I couldn't purchase it until then. Shipping is fine, straight to Aus, so we should see it next week or the week after.

Only problem is it's obviously not adapted. Two choices, I can give it to Tom to solder the plug on, or I can take it to Tec-sol and get them to do it. I think I will take it to Tec-sol, as although I think Tom could do it, I'd rather not test him out on something that was the only one left on the planet!

So basically, all the toys and the switch are sorted and on their way.

We really love you all, and this is a way we can help you out and and make your lives a little easier.

Lots of love,


Bec, Tom and Steph


Aside from saying "I want to call you right now but I can't speak, I am bawling" I couldn't think of a single thing that would even start to express what I was feeling.


I still can't.

Thank You Nico's Toybox

This is not going to be a long post. Well, not as long as I could make it. It could be over a thousand words if I wanted it to be. But reading "Thank" 500 times with 500 x "You" in between may get a bit boring.

Thank you.

Thank you to the main ladies who organised Nico's Toybox. I believe they are Jacqui, Nicole, Stacy, Kath and a little whisper has just advised me that Crystal may also be a key player :D  They have never really come forward and told me, sneaky ladies that they are. I just have to go by who has emailed me with Toybox queries. I don't have enough vocab to truly convey my gratitude.

Thank you.

Thank you to the rest of the BabyCentre Jan '10 ladies, and all other friends and family that joined the page and publicised it by sharing it on their facebook wall. There are now over 700 people following which is literally 10 times more than I would have guessed before things took off. I was never any good at Jellybeans in the Jar competitions either.

Thank you .

Thank you to the 50 or so people who have so generously donated the 70+ items which are up for auction. It is such an amazing gesture kindness. I know the ladies were targeting the WAHM's (Work At Home Mum) but even this has surpassed expectations with an amazing number of WAHM items as well as many other fabulous donations. It is taking great effort not to bid on a lot of items myself! Extra shout out to Locket who (when I get myself organised and email them) have offered to make Nico his own Ballon Ball as well as offering one for auction

Thank you.

Thank you to the bidders. Without you, all the girls hard work and the donators generosity would have been for nothing of course. The products on offer are fantastic and I know that you will be getting great items in return for your money.

Thank you.

Thank you last of all to the people who have made cash donations and purchased Nico a toy outside of the auction. I am not sure if it was meant to be kept from me but the newspaper tipped me off. (I did recently find out that one toy buyer was a friend's mum and sisiter. Bless them!)

 Also, whoever it was that tipped off my local paper : Thanks and who are you? I am sooo curious ;)

Thanks so much everyone one, I still get overwhelmed and teary about it.

Love much,
Kazz... and moreso Nico, even though he can't express it just yet.
xxxx

Princess Brooklyn - 3y + 4m

Princess Brooklyn,

You are starting to freak me out a bit now. Could you just stop growing, learning and getting all independant on me please? I can not imagine a more enjoyable, hilarious, infuriating and perfect age. You can have conversations about most things and your view of the world is just delightfully simple.

Racial Integration and Assimilation.
Me" Brooklyn, don't say dance (daence) say dance (darnce)"
Brooklyn "But we say daence"
Me "But we are from NZ so we say darnce"
Brooklyn "Well, we are in Australia now"

The Theory of Relatively
Brooklyn "Nico is tiny. And Tyson. And Bailey. And Sam is teeny tiny"
Me "Do you know the opposite of tiny is huge?"
B "Yeah, like dad, he is huge. I am half size of his huge. "
Me "Yes, you are half his size. And I am middle sized"
B "Yeah, you are short"

Don't be Sentimental
Brooklyn "I think that truck did crash into that car"

Me "Yeah, we don't want our car to crash do we?"

B "Noooo!!"

Me "I had a car crash once when I was younger, but it was just a little one like a bump"

B "Did you? Where?"

Me "In New Zealand when I was 20"
B "Well, you don't need to worry about that when we go there to New Zealand."

Being Tactful
(Cuddles in the middle of the night during a storm, you were a little scared, I was lonely with dad away and thought we would both like it if I fell asleep there)
"I love you Princess"
"Me too Mama. But you can go to your bed now"

You started swimming lessons again, for the first time in a year, two weeks ago. You ge to go in by yourself now and I sit in the wating room behind glass. I was a bit worried that when the teacher wasn't focussed on you, you would just be splashing around not knowing that you were meant to continue doing whatever it is. I was also worried that because your friend Riley is in the class too, you would be a distraction to eachother. You were PERFECT. You held on when you were meant to, you kept kicking/ floating/ lying back while the teacher was working with the other kids. You listened and most importantly, you had a fantastic time.


Swimming lesson. Fisrt one alone



Dad has been taking you to dancing every Saturday morning because I have been working. There was an open day last week which was my first Saturday off so I got to watch which was great. None of you can star jump properly and you sound like a herd of elephants as you all do "Butterflies" across the room. The tap dance part of the lesson was Nico's favourite because it was so clunky. I can not wait til the end of year concert.

 

It is school holidays coming up so swimming and dance will be finished for a few weeks as well as Nico's group. I am looking forward to catching up with your friends as the schedule opens up.

Hey Brooklyn, guess what?

I love you

Mama

Grateful for virtual strangers and virtual friends

Yes... this is pretty much going to be a similar vein as this one from the other day but the hugeness of what happened that day needs two blogs. That may not even be enough and there might be a blog about it every week until I feel I have done enough to warrant such an outpouring of kindness.

From virtual strangers. And virtual friends.

The virtual friends: This group of women, the ones that started this Nico's Toybox facebook thing, I am not sure what they were expecting. A few followers, a few items to get together $400 or so to buy Nico a switch toy if they were lucky (HA! "if they were lucky"?? Stupid expression, If IIIIIIII was lucky!!) They got a bit more than they bargained for though I am sure. I know I never even fathomed the response they are getting. Nor did I find out until days later that not only had they made this page... they had contacted Nico's physio/ keyworker to find out what they should get him!! Just from me mentioning once on here which Early Intervention he went to I suppose... INCREDIBLE!!


It has been 4 days now and there are 500+ likers in the group. There are about 50 items there to bid on. AMAZING items. They have a whole lot of work cut out for themselves getting this thing together, they have a baby the age Nico should be... some 2 kids or more maybe... and yet they are still encouraging more and more people to get on board. I need a bigger vocab because I am over hearing/ writing/ thinking the worrds AMAZING and OVERWHELMED.

The virtual strangers: The friends of friends of friends, all who knew nothing of me or Nico last week, donating items or joining up the group and sharing it to potentially bid. I am glad that if they bid, they will get something for their kindness, I really like that idea but still.. for everything that is bid on is a gracious, generous soul donating it to the cause, to my little man and for that, my family and I will be eternally grateful.

Thanks to Grateful with Maxabella, I can share my gratefulness even further

xxx's to virtual friends and virtual strangers

K