Xmas Update

Ok, so I can see it has been a while since I have posted... I have been offline and have much to update, but will contain myself to the important bits!!!



At the start of December, Jasper got his yellow belt in tae-kwon-do. There was a grading and everything, and it was so cute! I teared up and everything... he was so proud of himself! here he is with his belt..



My mum and dad came to watch the ceremony, and had a pic too. they are very proud grandparents!

Ok, onto Christmas! Paul works away, so was not going to be here for Christmas Day. Jasper and I were heading to Busselton (about 3 - 3.5 hours south of us) with my mum and dad. My uncle, aunty and 2 cousins live there.

Paul flew out to work on the Monday before Xmas, so we let him open one present that night before bed.. He got an Ultimate Omnitrix from Ben 10.. he was very excited!!!

Here is Jasper with his dad.

On the Tuesday before Xmas, my sister and her 3 kids came over for a play as we were not going to be seeing them on Xmas day either. Here is a photo of Jasper with his boy cousin, Campbell. He is the happiest little boy you have ever seen!! This is the first photo I have of just the boys!!

Here are all the kids together.. L-R - Campbell, Jasper, Georgia and Devin.Here is where we spent Xmas Eve, Xmas Day and Boxing morning.. Jasper and his cousin Tashi on the trampoline.. Jasper spent a lot of time on here - in between all the eating he did!!!

Here are our cousins, Sarah and Tashi. They are such sweet girls, and the love between them and Jasper is wonderful!!!

My little Santa Claus on Xmas Eve.

My boy and I.. We had such a great time and a lot of fun!

Christmas morning I get woken up by Jasper.. Where we were staying was a unit in a caravan park. It was really nice. Jasper had bunk beds (so slept on the top of course!!), and I had a separate room. I told him to stay in bed in the morning and call for me incase he slipped getting out of bed... but no, he climbed down and came to wake me up with a "merry Christmas, mummy" and a kiss. We snuggled in bed for a minute talking about if we heard Santa... neither of us did.. Jasper said he saw his stocking filled at the end of his bed. I asked him if he opened it, and he said no, he wanted to wait for me!

First things first, we needed to check what the reindeer did to the carrot we left outside. What a MESS!! It was spread everywhere!!! Santa had nibbled the cookies we left out, and drank some of the water too...

This is part of the stocking emptying!
There were 3 presents in Busselton, and the rest we had already asked Santa to leave at our home for when we got back. After opening the presents and getting dressed, we headed over to the McCamish's house for MORE presents and lunch.

After lunch, the kids were so tired.. late night and an early morning... so Jasper and Tashi went for a sleep in Tashi's room. It was too cute to not take a photo!

I took this just before I woke them up - because it was time for..........


BEACH CRICKET!!!!!

Ok, so I know we Aussies are used to hot weather for Xmas - no snow and plenty of sunshine... I could not imagine being inside and cold for Xmas.. we spent a few hours at the beach playing cricket and soaking up the sun. It was beautiful!! What a way to be spending the day. Anyone jealous yet?

Then back to the McCamish's for more food and drinks!!!

It was nice to get home, and Jasper was excited about the rest of his presents, but we had a great time this Xmas.

Boxing Day lead to a big drive home (lucky my mum and dad did the driving, because Jasper and I slept!). Then home for more presents, early dinner and early to bed!!

I can't believe it is all over for another year. It came so quickly and is over so quickly.. now we have to wait another year for it all again!!!

Medically speaking, we have no updates.. Jasper is healthy and has his next blood test due in January.

I have much more to post on, but this is enough for now, and the rest of the stuff is not as exciting as the Yellow Belt and Xmas!!!

Thanks for reading.

Brooke

The Wombat Wobble

Hi all,

Just a short update this time.

We have had a pretty uneventful week or so, really busy, but not too exciting!

Jasper has been practicing for his school assembly - the pre-primary classes did a "dance" for the whole school.

It is something that happens at assembly every fortnite - a class does an item, and this was the Pre-Primary kids turn!

They are aged 5 to 6, and it was very cute.

No school uniforms today, they had to dress in browns and earthy colours - to look like wombats!

I have a video of the song (it is very long and repeats itself a lot - but again, they are 5 and 6 years old!).

Here is a photo of my little wombat..



























It was very cute! They made the ears at school as part of the preparations and got their noses painted in the morning before the assembly started.

Ok, so the video.. it is a bit grainy, but it was just on my little camera... Jasper is up the back (smart move, smallest kid gets put up the back..). he was messing around a bit (so being up the back was not so odd..), being silly trying to hide from me. He is back row, second in from the edge.. just look for the little guy!!

I got distracted part way through and the camera kind of just goes off the performance..

The song was so funny. They did a really good job - there are hundreds of faces staring at them from the front, and there were no tears from anyone!

No medical updates today...

Ok, I give up on the video.. it took 45 minutes and still was not uploaded. My computer is so SLLLOOOOWWW. Sorry people, I will try again another time. I have things to do now!!

Thanks for reading.

Brooke

Media Star in the Making

Hi all,

Well, Jasper and I have had a big week!! Believe it or not, this post wont have any photos! It is the first one like it!

Well, the week started with Jasper and I being on the front page of the North Coast Times, (a local paper here in Perth). It was really funny as some of the kids at school were telling Jasper he was famous. he loved it!

THEN I got a phone call from one of the producers at 6PR (a radio station) and they wanted us to come in and do an interview on Sunday morning. Of course, I was all for that. (They had read the local paper and started ringing B Miles in the phone book!)

Meanwhile, we got the FARF (Fanconi Anemia Research Fund) quarterly newsletter that had our story in it as well. I had actually forgotten about this one as we were asked to write the article when we were in America (August).

I also had a fundraising note on the back of the school newsletter about Fanconi Anemia Fundraising.

All in all, we have gone media-crazy!

Jasper was so good at the radio station. I had bribed him before hand, but don't think I needed to. He was telling jokes and everything. After, he wanted to go back in and say hello to all his friends, but we were done.

I am really happy that there are some places that are taking an interest and I can help raise awareness. it is really hard to get momentum with something so rare, but if I am not an advocate for my child, who will be?

If I am not talking about FA and helping to educate people, who will?

There are not a lot of us out there affected, and I know everyone is doing their best to raise awareness, I just hope I can make a difference too.

Thanks for reading.. Maybe the next post will have some photos!!

Brooke

Halloween and ENT Update

Hi all,


Well yesterday was Halloween, and Jasper has been looking forward to it for about 4 weeks! Every morning he wants to know how long til Trick or Treat..


He even has the song down pat..
Here is the video of it.. (click on the PLAY twice)




He thinks it is so funny, but knows not to say it to people, it is just something funny we do to get ready for knocking on doors!


Nice face paint job, hey?!?! Maybe not but they are only 5 so it was ok!

We went with one of his best mates, Liam.. here are some pics of how they looked.













(Believe it or not, Liam is only one day older than Jasper... It is hard to get close up with both of them on the same photo.

They got a lot of candy.. Trick or Treat is not that big in Australia, and there were heaps of people not answering the door, or just with just no candy, but that is not what we do it for, it is for the fun (and the scaring), and that it was!!

We didn't get home til 8.30pm - Jasper's bed time is 7pm, so you can imagine just how tired he was!!

He was still up at 6.30 am though!

He was allowed 2 bits of candy after the door knock, and suprisingly he was ok with that!


Medically, Jasper has had an ENT appointment this week (ear nose and throat) to retest his hearing. It is slightly improved from 6 months ago, but still borderline "mild" hearing loss. I am not suprised that it was an improvement. Last time he was tested was really close to an ear infection. We will go back for another test in 6 months time. It is just monitoring it to see if it gets worse.. fingers crossed it does not!


The dentist is the next thing we have, so not very exciting. I will post again soon.


Thanks for reading, and we hope everyone had a Happy Halloweeeeeeeeen!!!


Brooke
xxx

Gin Gin Farm Day for Camp Quality

What a big weekend we have had!! We had the Fanconi Anemia Family BBQ on Saturday (see previous post), then today we went to Gin Gin (about 50 minutes north of our house) to a farm day by Camp Quality.

Helen and Ray invited us, and we had a great time.


For those that have not guessed yet, I love to take photos of things Jasper and I do together. I also like to share them so the people we love can see how he is growing and spending his precious life!

I feel all children are special, and the days of them being "kids" is so limited - they grow so quick.


This first photo is the start of our day.. isn't he cute!!












One type of baby animal they had there were some orphaned joeys (baby kangaroos). you could not pick them up, but could touch them.. very sweet. There were 4 or 5 of them.













Jasper and Ray were very happy to see each other! I usually say "look like you love each other!" on photos, but didn't need to for this.. they were already in the moment!












Jasper and Ray sitting on John's lap. John is Helen and Ray's neighbour and a really good friend of theirs too.













There were little carriages linked together getting pulled by a small tractor/ride on mower... here are the boys getting ready for their ride.












There was a little carriage ride pulled by two minature ponies.. the boys are on here too!












Here is my tough boy getting his riding helmet on.. there were 2 full sized horses for the kids and adults to go on. Jasper was "chomping at the bit" so to speak!!












Here is my brave champ on the horse!












Our little group all went on a tractor hay ride together. From the front: Jasper, Ray, Helen, John, Vicki, Matthew and me.















Jasper and Ray were ripping eucalypus leaves off the trees that were really close to the tractor.















Some alpacas.. looking for food. they weren't too happy when we just took some photos and kept on going!!!


















Some tribal drum beating took place. It was right next to where we were sitting and either gets in your blood or gets on your nerves!!! But it was very organic, and the kids had a blast whacking away.























After all the activities, the boys had a cordial skulling competition!!! there was cordial covering them both!














Lunch time!!! For us and the flies! There were literally thousands of flies!!!
















Cuddles with Jasper and Ray!



















This is one of the first times Jasper has held a baby animal. He is normally pretty scared and I am not sure why. Paul and I always hold them and encourage him to do the same.. He was so proud of himself! He even named it Winston.















Second horse ride, and last one for the day. Jasper is on the horse with the blue blanket and Ray is on the one with the pink at the back.















Coming back from the ride! The photos never do it justice. The trees were beautiful and green and the track they went down was very pretty.

After all this activity, you would think that Jasper would be so tired he would be sleeping on the grass, but here he is running back from somewhere.. super speed!!!

We had a great day.

Camp Quality put on the day for everyone, and it was totally awesome.

Having Fanconi Anemia affect our family has been such a life changing thing.

It is not all bad. Far from it.

We have met some wonderful people, and made some fantastic friends that will last a lifetime. We are experiencing things that we would not have the chance to do otherwise, and appreciate more things than most people think about.

Enough reflection, time for bed!!!

thanks for reading!!!

Brooke

xxx

FA Day Perth

We had our Fanconi Day Family BBQ at a beautiful spot in Kings Park, Perth. It was a worry on the lead up as we had weather reports of rain and storms... but it all cleared and the sun shone down on us!

Here are just a few of the almost 200 photos I took..

First there is my mum, Bev with my 8 month old nephew, Campbell. Then there is me with Campbell. He is such a cute baby and so happy!

We had a BBQ - just sausages and onion with rolls (to make hot dogs) and salads. Here are Bek and John cooking the BBQ... Bek is Helen's daughter and John is Helen's neighbour. (Helen - as you may have seen in some of the previous posts, is our new friend and her son is Ray and he has FA like Jasper).

Here is my dad, Alan, with John at the BBQ. You can't reserve the BBQ's at Kings Park, so Jasper and I got there early and put up some signs, you can see one on the BBQ lid that is standing up. It worked! People were coming up to use them, and moving on from this one!!!

Here is Ray eating his hotdog. He had a mohawk done for the day, and was totally rocking!!

Here are Karen and Adam. They are 2/3 of the other FA family that came to the BBQ. There are 4 families in Perth, and 3 of us made it to the BBQ..

There was a lot of relaxing going on.. here are my mum, 2 nieces (Devin and Georgia) and my sister Alana.

My sister, Alana with Karen.

The relaxing did not last too long.. we had GAMES after lunch! There was a 3-legged race, wheel-barrow race, egg and spoon race, and a sack race. The sack race was for the kids only, but the other ones had a combination of kids and "adults".. there were people stopping to watch us, and a lot of cheering happening!

It was a lot of fun for everyone!

This one was a practice run!

Here are Ray and Helen racing against Jasper and Bek!

This one is the wheel barrow race. The kids were meant to be the wheel barrow, and the adults to move them.. as you can see, there is one adult racing about as a barrow.. this is Adam's dad, John. Karen was pushing him around, and it was such a laugh. They were going everywhere!!

Egg and spoon race here.. I don't think we got one dropped! The kids did really well!

Here is the sack race!

Here is Ray after the games. Do you think he looks like he is having fun?!

Hanging out in the tree.. Here is one of Jaspers best friends in the blue, Liam, Jasper's cousin, Devin and Jasper in the red. Carly (Liam's mum) took this shot - not bad!

Here is Carly.. she hates getting her photo taken, so this is a rare shot!

Here is some of the play equiptment the kids had to play on..

Here is Helen with her friend Vicki.. I told them to look like they love each other!!









This is Matthew - Vicki's son. He is 18 and Helen knows them through the hospital. Matthew has leukemia.

Vicki and Matthew looking like they love each other!

We picked the best day to have the BBQ.. there was music, entertainment and a face painter. All of it was free as part of the Breast Cancer Awareness Month which is October every year in Australia.

Here is some of the entertainment that was just on the other side of the park from us.

Here is Jasper after a trip to the face painter!











Ray after the face painter!

Adam also went to the face painter!

Helen and her friend John - the cat and the Lion!!!

Helen with Adam and Ray.

This is Jasper with his Fanconi Camp t-shirt and fundraising hat.. he looked very cute!

Karen and Helen saying goodbye at the end of the day.

There was a magician mesmerising the kids!

All in all it was a wonderful day and a lot of fun was had by all!!

We cant wait til next year!!!

Thanks for reading.

Brooke