Presents from America!

Although we have only met one other PHACE family we are in regular contact with many others through the PHACE Syndrome Community website.In particular the Olson family.One day we had seen a photo of little Sophia wearing a onesie with a beautiful design stating "IT'S A BIRTHMARK" on it.It had been airbrushed by Trish's Dad, Mikana.We commented on how cool it looked and Trish said that he would be happy to do one for Jayda.The first we got was a onesie which we loved.Just before the 2010 PHACEing the Future Conference we sent Trish some Reminderbands and a purple top for some airbrushing.When we recieved a package from the U.S. we were greeted with these wonderfull tops,two more which were airbrushed and a shirt from the conference.Jayda loves wearing them as if she knows that they are special.

Kade's 12th Birthday party

Jayda's half brother Kade had his 12th Birthday party recently.We decided to do a Hawaiian pool party with blow up palm trees, grass skirts, tropical fish pinata and other bits and pieces. Kade wanted Tiff to make a motorcross cake and she did a fantastic job. The kids played limbo, Twister,water bomb fights and swam in the pool. It was a good day,but also a very tiring one with eleven 12 years old running a muck.

Summer Fun

 

As  the weather warms up we have been taking advantage of the sunshine by being outside more. Amelia gets scared of the pool now so we set up the shell pool to get both girls ready for the big pool, they loved it. Something strange happened with Jayda with her hands and feet turning purple and on her left arm from the elbow down was blue, it was even more unusual because it was a warm day and she didn't feel cold.This is something we have not seen since Jayda was on Propranolol. The girls have also been down to the park to feed the ducks and just enjoying the sunshine.

Perth Royal Show

 

The Perth Royal Show runs over a week of every September school holidays and we have been going every year since Amelia was born. We all catch the bus and train and both the girls love it. Our first stop was to get the girls show bags, last year they had sold out of the ones we wanted so we got in early. It was then off to look at the poultry and dogs and there is always something unsual to see.We then took the girls to the kiddie rides and Amelia went on her first roller coaster, she got quite upset. Tiff took Jayda on her first carousel ride and she loved it. We went and watched a motocross display which had all of us amazed at their stunts.Our next stop was sideshow alley, Kade has become more daring each year and Tiff and him went on heaps of rides. Then Kade and Matt went on the mega tumbler and you would been laughing in stitches if you'd seen them went they hopped off, HILARIOUS! It was a good day with all of us exhausted come home time.

The Circus

The circus was in town so we decided to take the kids.We went last year when Tiff was preganant with Jayda and we enjoyed it. This year they had some different acts which was really good to see. The circus is a family run business and the performers spanned the generations with the youngest performer being a mear 3yrs old. Jayda was a bit distracted prefering to eat the popcorn than watch the show. Amelia loved the trapeze artists and enjoyed her pony ride.

Amelia on the pony.

Twin brothers performing.

So daring!

The Wheel of Death!!

Jayda goes to ballet

Jayda's big sister Amelia has done ballet for over a year now and Jayda has always come.This week we put Jayda in a outfit too as she likes to join in as well. She looked so cute. Jayda tries to participate in some of the movements but she generally just runs around having fun.

Joining in with the girls

Big sister Amelia showing her the ropes

So cute in her outfit

Loving the props!

A new family member

For those who don't know 3mths before Jayda was born Matt's dog Phil died,he was 17yrs old and a very much loved family member.So after 18mths we decided it was time for a new dog.We did some searching on the internet looking at refuge dogs and we went to the Animal Protection Society to look at some.We already had a couple in mind but they were not right for us.They then brought out Poppet and instantly we all warmed to her and her us.She is an 8yr old female Staffy X,she has a beautiful nature and is very well behaved.She needs a bit of fatening up and loves to chase the ball and stick.We have only heard her bark late in the afternoon  when she wants to come inside and she goes straight to her bed.Jayda tries to sit in there with her,she has no fear.

Star Struck

Amelia,Matt and Jayda with Danny Green

Our family was invited to W.A. Charity Direct's A.G.M held at the ESS Bar in Subiaco.They are the charity who helped us with our flights to Houston,TEXAS.Their Patron is Danny Green who is the current IBO World Cruiserweight Champion knocking out Manny Siaca in the third round.The kids had a great time and Matt was able to tell people about Jayda's condition.Much thanks to Elisha Thompson,Bonnie Bullock and Peter Carter.This charity has a wonderful bunch of people who dedicate their time and money into this.They give back 100% of funds raised to help peolple such as us who can't get help from the more well known charities.They could not have a better patron then Danny Green who spoke from the heart about his involvement.To find out more about W.A. Charity Direct click on the hand logo.

Our new friends in Houston

Fabian,Yury and Gisselle

Gissie, Jayda and Amelia

While we were in Houston we had a fantastic opportunity to meet another family whose daughter has PHACE Syndrome,they are Yury,Fabian and Gisselle.It has been the only time we have spoken face to face with another family in a similar situation and it was so good to talk about our kids knowing that we share a lot of the same concerns.We went to the Sesame Street Live and the Downtown Aquarium,we also had the pleasure of going to Gissie's  birthday party which was just as much fun for the adults as the kids.On our final night in Houston we went out to dinner which was a really nice way to end our trip.

Gissie's 2nd birthday

Jayda,Fabian and Gissie

Jayda's 1st Birthday!

Very first bike

Giant cupcake

Family and friends

Yesterday Jayda celebrated one of her biggest milestones, her first birthday. It was a beautiful day for a party, which is exactly what we had. We had family and friends join us for a sausage sizzle and a day of fun and laughter. Jayda wasn't too sure what the fuss was about,but she enjoyed the company. She had lots of help from her big sister opening her presents,I think she was more interested in the wrapping and boxes then the actually gifts. I made a giant cupcake for her cake and it went down like a treat,Jayda couldn't get enough of it. For someone who started her morning bright and early the little birthday girl didn't sleep until 10 that night,too much going on she obviously didn't want to miss out on a thing. Over all the day was lovely and we'd like to thank all of those who were able to come and celebrate the joyous occassion.

Having fun!

Blowing out the candle.

Lots of presents!

Beautiful birthday girl.

Jayda's first Easter

Once again sorry for the delay. This Easter was Jayda's very first. As usual the girls both woke bright and early straight away Amelia saw the presents on the table. Both of the girls were given some clothes from their nanna and pop and Aunty Mel and Uncle Shannon. We bought Jayda a dancing and singing pig wearing bunny ears,she loved it ! Amelia aslo got an extra special Dora egg and egg cup,she's a big fan.

 

Then it was time for the easter egg hunt in the garden. Amelia remebered the routine from last year,she has such a good memory,she even asked for the basket I made for the previous hunt but this time round we used easter egg bags. Amelia was hot off the line and whipped around the garden so fast she hardly left anything for Jayda! Lucky Matt and myself we're able to supervise and leave a few for Jayda to find,she had a ball,she even tried to open and eat one straight away,she wasn't happy when I took it off her,oopps!

We spent the following day at a local park for a bbq with Matt's son,it was a great Easter and the entire long weekend was fantastic!