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!

Long overdue update

We must apologise for not updating for a while,I am back working full time and Matt is busy looking after the kids being "Mr Mum". I'll begin with Jayda's progress. Jayda started walking on her own at 11mths of age. We are so proud of her progress,she has been eager to be on the move and catch up with her big sister. Crawling is not a neccessitiy anymore as walking gets her to places faster. Now we really need to keep her in our sights all the time as she gets into all the cupboards,pulls out her sisters shoes and clothes and loves to play with the plates and cups and still likes to play with dad's dvd player :)

Jayda is now becoming more adventurous as she is always trying to be like her older sister. She climbs onto Amelia's chairs and also tries to ride Amelia's tricyle. Another thing weird but funny thing Jayda does is she places her head on the ground and stares at everything upside down through her legs,she loves being that way!

Jayda has had another 6 teeth come through and 4 of those came through together,surprisingly they didn't affect her too much,or should I say lucky for us!

Out of all of Matt's music both Amelia and Jayda have taken a real liking to Motley Crue. As soon as they hear the cd start especially in the car, they both have grins from ear to ear and soon enough their feet and hands are taping along to the beat. At least we have one way of turning a crying child in the car into a happy one.

Dr Clarks and Dr Metry's findings and recommendations

We received both Dr Clarks and Dr Metry's reports via email yesterday,whcih was good timing since we had Jayda's neurology appt too. Dr Clark told of the findings from the MRA which was that Jayda has several tortuousity of her arterial anatomy, has some anomalous origin of the posterior cerebral artery and some tortuousity of the basilar artery. He mentioned that Jayda does not show any Moya Moya patterns or any other immediate concerns. He said that the aspirin therapy or surgical intervention wasn't necessary based on these results and that future neuroimaging would be needed in the next 6 mths to monitor for any progression.

Dr Metry tells of how healthy and well-developed Jayda is showing no acute distress. She has segmental erythematous and telangiectatic plaques and patches which extend over both sides of her face in an S1 distribution on the right and in an S1 through S3 distribution on the left. She also has scalp involvement bilaterally. Dr Metry mentions that Jayda's bilateral segmental facial hemangioma in the setting of an aberrant subclavian artery,anomalous origin of the posterior cerebral artery and some tortuousity of the basliar artery, means that she definitely meets the diagnostic criteria for PHACE syndrome.

Dr Metry also mentions that there is no need to restart medical therapy for Jayda's hemangioma unless significant reproliferation occurs such that cosmesis becomes of concern. If the lesions remain stable then Dr Metry would expect the hemangiomas to involute well over time with good cosmetic prognosis. However if needed laser therapy may be done before school starts for residual erythema. Dr Metry has said that if we or our doctors have any questions or concerns that may arise in the future we are more than welcome to contact her. She would also like know the results of Jayda's MRA in 6 mths.

We have also emailed Dr Siegel asking for the consent forms to give blood as part of the PHACE registry. Which we will be recieving very soon in the mail aswell as the laboratory forms. It feels really good to be a part of such a good cause and knowing that it will all go to help find out more about this condition.