Jayda's Journey

Australia Day

2012-01-26T03:26:00.000-08:00

Every country has some sort of National day, but none celebrate like us Aussie's do on the 26th of January every year. AUSTRALIA DAY. Whether it be at the beach,having a BBQ or going to the Skyshow fireworks. With it being so hot here,42 degrees celcius we decided to stay home and enjoy our pool and air conditioning. Jayda has being quite reluctant to swim but today was the day she decided to swim by herself and she loved it. Her older sister has also become a lot more confident in the pool. We had our usual BBQ with lamb chops of course.

Children's TV Star

2012-01-18T00:06:00.000-08:00

Jayda and Amelia had a chance to meet a TV Star called Jimmy Giggle. He is from the ABC show Giggle and Hoot. The girl's had no idea where they were going and were so surprised to see one of their TV idols. It was a very long wait, but the girl's were all smiles when it was their turn to have a photo taken with Jimmy Giggle and have their posters signed.

Amelia's 5th Birthday Party

2012-01-17T23:48:00.000-08:00

On Sunday the 15th,January we had a pool party for Jayda's sister Amelia's 5th Birthday. This was the first year Amelia had invited friends so she was very excited. Amelia really wanted a guitar and she wasn't disappointed with her purple classical guitar. Tiff made Amelia a mermaid cake this year and it was another awesome cake. Amelia's friends came in the afternoon and you could not keep them out of the pool. We had a sausage sizzle for lunch,cut Amelia's cake and smashed the pinata. It was a great day.

Family Outings 2011

2012-01-05T04:09:00.000-08:00

Well it has been some months since we have posted and quite a bit has been happening. We have been to the Perth Zoo,The Perth Royal Show and the beach. It was the first year Jayda went on any rides and she loved it unlike big sis who prefers her feet firmly on the ground. The zoo is always a good day out and both the girls love animals and the highlight was seeing one of the elephants doing all these exercises. The girls love the beach and we decided to go to the dog beach and take Poppet with us. I don't know who had more fun the dog or the girls. We then went and had fish and chips in Fremantle for lunch and visited Bon Scott's bronze statue.

Christmas 2011

2012-01-05T03:51:00.000-08:00

Another year and another visit from Santa.The girls had their photo taken with Santa twice this year once together and the other with their new cousin Sienna. We also had a secret santa picnic with some of Amelia's friends from school. The girls were up early and they first wanted to see if Santa and his reindeer had eaten the treats left for them. Of course they weren't disappointed. Then time for them to open their presents. As usual Amelia is straight in there where as Jayda is a little more hesitant. They both had many presents under the tree but neither of them saw the black sheet in the lounge covering something else. When they took the sheet off and saw the new bikes for them they jumped straight on. It has taken Jayda about a week to get the hang of it and she loves it.

This year was the first time that we had Christmas lunch by ourselves,with the family getting together for dinner. We decided to keep it simple with a BBQ lunch and salad knowing what was coming for dinner.LOL. More presents were to be opened at Auntie Mel and Uncle Shannon's and we were quite surprised the girls stayed up as long as they did.

Jayda's progress

2012-01-05T01:30:00.000-08:00

2011 was another big year for Jayda but not as hectic as the previous. Our main focus was Jayda's speech therapy. At the beginning of 2011 Jayda presented with a severe delay in expressive language skills but with age appropriate comprehension and understanding skills. As parents we knew Jayda had excellent comprehension quite beyond her years yet she was getting so frustrated at not getting it out verbally. Now Jayda uses many 2 and 3 word phrases,her vocabulary has really increased,she is counting and copying. We know all children develop at different times,but we know through the PHACE literature that speech and developmental delays happen and she will continue with her speech therapy. Jayda is a very bright and happy girl. She loves playing with her big sister(most of the time),swimming at the beach and riding her bike.

This year she will also start her laser therapy. Her Hemangioma has remained quite stable after being off Propranolol and is going through it's natural regression. There are days still that it becomes very noticeable and the weather and her mood pay a large part in this. As Jayda is also part of the PHACE Syndrome Registry we were recently sent the PHACE Syndrome Handbook, A guide for parents and physicians. It is great little book but the biggest surprise was a Happy Holidays photo from the authors of the book.

2012-01-05T00:30:00.001-08:00

Customize a photo album

Easter 2011

2011-07-03T00:02:00.000-07:00

Easter egg hunting

Good Friday at Araluen Botanical Gardens

Another year, another easter and not much really changes. Both girls were up early and could not wait to start their easter egg hunt.The easter bunny had hid the eggs all over the yard this year and by the end their hunt their baskets were very full. This year for Good Friday we went to Araluen Botanical Gardens for our family get together. It was the first time we had gone and the scenery was absolutley beautiful.We walked along the terraced gardens which are very old and played along the streams and lake. The easter weekend was all in all a lovely time.

By the stream

Clowning around

Sitting on a tree seat

Jayda's 2nd Birthday!

2011-07-02T23:26:00.000-07:00

Opening presents

Caterpillar cake and insect cupcakes

Apologies for the lateness of these posts.On the 17th of April Jayda celebrated her second birthday.It was a quite day as family members were coming in the afternoon.Jayda opened her presents from Mum,Dad and Amelia in the morning,Jayda wanted a princess doll and was not dissapointed when she got two.We had a sausage sizzle in the afternoon with all the family and Tiff made a wonderfull cake that was in a caterpillar shape as well as cupcakes.It was a fantastic day with Jayda staying up very late as she didn't want to miss anything.

Aunty Mel and Jayda

The Birthday girl

Dermatology Appointment

2011-04-19T23:35:00.000-07:00

Jayda had a Dermatology appointment this week,which for us was exciting as it has been a year since our last one.We were even happier that she saw her regular Dr and not someone unfamiliar with her condition.Dr Halbert was extremely pleased with the involution of Jayda's Hemangioma and was quite happy to start laser therapy soon but was also happy to wait another year to see if even more involution happens.It was decided to wait a year and then start laser therapy under G.A. Jayda will need about two or three of these followed maybe by a couple of touch ups.The plan is to have as much done before Jayda starts kindy and lessen any potential bullying.

Jayda goes to Speech Therapy

2011-04-19T23:14:00.000-07:00

After a recommendation from the Neurologist,it was decided Jayda should have a speech assessment.Jayda's expressive and receptive language skills were assessed and supplemented by clinical observations including video taping Jayda playing with her Dad.The key findings were that Jayda presented with a severe delay in expressive language skills and has age appropriate comprehension and understanding skills.Jayda was offered group therapy that provides strategies for us to support her development of language skills and so far we have done four sessions with two more to follow..We start the sessions with singing and signing a hello song to each child that is followed by play time.We then learn a new strategy,play a game and sing a goodbye song.Jayda really enjoys her therapy and is trying a new word every week.If there has not been much improvement we will sit down with her therapist and work on the next strategy.

Australia Day

2011-02-11T02:06:00.000-08:00

Cheezy smiles!!

Fun on the slide!

On the 26th of January every year Australia celebrates it's National Holiday so this year we did a very Aussie tradition of the beach and bbq. We went to the Rockingham foreshore and it was packed but still managed to find a nice spot under a tree and close to a playground. Our lunch was more breakfast like with bacon, eggs, mushrooms, tomato and some good ol Aussie lamb chops (YUM). The girls loved the beach and Amelia got her face painted to raise money for the Queensland flood victims.

Face painting and fun on the beach

Amelia's 4th Birthday

2011-02-11T01:54:00.000-08:00

Opening presents

Playing pass the parcel

Jayda's big sister Amelia turned four on the 16th of January. This year Amelia wanted a party and a princess cake. As it was school holidays it was hard to invite her friends from daycare so it was just the family. We played musical chairs, pass the parcel and danced to Amelia's new CD.

Birthday girls blowing out the candles

Christmas Part1 and 2

2011-02-11T01:11:00.000-08:00

Opening presents at Nanna and Pops house WA

As we were going to be on holidays for Christmas we celebrated with Tiff's family the week before. We went for lunch and thankfully it was not too hot. Amelia and Jayda got a Dora play kitchen, play guitars, Barbie dolls and lots lots more. Christmas day was celebrated in Queensland with Matt's family. Again the girls got spoilt as did Mum and Dad (haha). Matt's Dad cooked a traditional hot Christmas lunch soo much food. Both days were fantastic and most importantly it was a time to spend with family.

Opening presents at Grandads house Qld

Holidays in Queensland

2011-02-11T00:50:00.000-08:00

At Australia Zoo

At Warner Bros Movieworld

For Christmas 2010 we all flew over to Queensland where Matt is from.This was the first time that Matt's family (apart from his Dad) had seen the kids.We stayed at Matt's Dad's house in Deception Bay which is about 30mins from Brisbane. During our stay the weather was not the usual sunny Qld weather, it rained alot of the time but we still managed to get some fine days in which we made the most of. We visited AUSTRALIA ZOO, home of the crocidle hunter Steve Irwin R.I.P and went to Warner Bros MOVIEWORLD. We also went to Bribie Island to swim in the sea and visited lots of family. The day we left Qld to head home was the start of what the world came to know as the terrible Qld floods.

On the beach at Bribie Island

At the Lagoon

Presents from America!

2010-11-19T01:38:00.000-08:00

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

2010-10-26T05:17:00.000-07:00

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

2010-10-26T05:08:00.000-07:00

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

2010-10-26T04:57:00.000-07:00

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

2010-08-22T05:38:00.000-07:00

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

2010-08-22T04:34:00.000-07:00

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

2010-07-01T20:43:00.000-07:00

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

2010-05-13T04:14:00.000-07:00

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

2010-04-28T22:27:00.000-07:00

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!

2010-04-17T23:12:00.000-07:00

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

2010-04-10T04:10:00.000-07:00

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

2010-04-10T03:36:00.000-07:00

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

2010-02-25T00:46:00.000-08:00

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.

Neurology appointment at PMH

2010-02-24T23:59:00.000-08:00

Yesterday Jayda had her appointment with her neurologist at Princess Margaret Hospital, it was the first time we'd seen her doctor since we got back from Texas. We had lots to give him, the reports from the MRI/MRA scans done at TCH, Dr Clarks and Dr Metry's reports and we also showed him the information booklets we had been given about PHACE. He asked if he could have a minute to read over the reports,which we gave him. He was happy to hear that Jayda doesn't need to be on aspirin,as this was one of the main questions he asked us to have answered while we were over there. Another thing he read was that surgical intervention was not needed at this stage but if there were any talk of this occuring Dr Clark would like to have us back at TCH. He tried to explain some of the results with us that we weren't 100 percent sure of and it made things alot clearer. He still puts Jayda at a 20% risk of having a stroke by the age of 18mths. He was extremely happy with Jayda's ability to walk along the furntiure and her newly aquired skills of clapping, playing peek a boo with herself and hi fiving us.He mearsured her head circumference and he was happy with the plan for the future scans. He is going to book Jayda in for MRI/MRA of the head and neck in August and then a review appointment with him afterwards.

Fun Things In Houston

2010-02-22T04:57:00.000-08:00

Over the three weeks we were there we got to do many things in Houston.

SESAME STREET LIVE:

We had known about this concert for quite some time so it was decided before we left we were going.The concert was held at Reliant Park Stadium and was only 5mins from our hotel.We also went with another family whose daughter has PHACE.When the concert started Jayda started clapping and this was her first time clapping it was such a surprise.

HOUSTON ZOO:

The zoo was another thing on our agenda,as you always see something different.It was quite cold that day and it appeared that many animals felt the same way,but we still had a great day and saw lots of unusual animals that we had never seen back home.

HOUSTON SPACE CENTER:

The space center also encompasses the JOHNSON SPACE CENTER where all missions from the moon landing to current shuttle missions are run from.The complex is massive and they have a full size mock up of the shuttle to train astronauts.There is a lot of history here including full size rockets,space suits and the lecturn that President J.F.Kennedy made his speech to put a man on the moon "not because we can,but because it is hard" Of course we had a blast here.

DOWNTOWN AQUARIUM:

The Downtown Aquarium is located in downtown Houston.It has a variety of fish and animals including four white tigers and has a resturant that has an aquarium inside it that is huge.Jayda absolutely loved the fish and was facinated by it all.There is also a train ride,carousel and ferris wheel so there was heaps to do.

CHILDRENS MUSEUM OF HOUSTON:

Houston has many museums and they have one especially for kids.In some ways its like our Scietech but again this place is big and there is so much for kids of all ages.What we loved the best was that it has a part called KIDTROPOLIS and it is like a miniture city where kids can learn about banking,shopping,voting anything that an adult does it was amazing.

OUTSIDE PLAY:

The weather was quite cold the majority of our stay so when it was fine we tried to visit some parks and there are many in Houston.We saw turtles,squirrel's and fluffy headed ducks we took train rides,visited a japanese garden and saw many statues and water features.

MRI/MRA results with Dr Metry

2010-02-22T00:15:00.000-08:00

The lovely Dr Denise Metry

Tuesday was our last appt at Texas Children's Hospital and to us our most important with Dr Metry.It was the most pleasant Dr's appt we have ever had and Dr Metry is just wonderful.The appt was about 2hrs and many things were discussed.So we will start with Jayda's Hemangioma.

Dr Metry said that her H is looking really good and that she does not need to go back on Propranolol for now.She said that our PHACE kids H tend to grow a bit longer and if we see a big change then put her back on it.She said Jayda is definitely a good candidate for laser at about 4yrs of age and that her skin type will do well with the laser.Now to her aterial anomalies.

FINDINGS:ANTERIOR CIRCULATION.Portions of her internal carotid arteries are tortuous.Her left ophthalmic artey is not visualized and her left carotid terminus is more posterior than is typically seen.The left A1 segment is hypoplastic but present.The right A1 segment does not originate from the internal carotid artery but rather an artery coursing around the temporal pole.No evidence of stenosis or aneurysm is seen.

POSTERIOR CIRCULATION:We will cut a fair bit out and give you the more important bits.The basilar artery is complex and tortuous predominately on the left.A linear defect due to fenestration and or loop is seen left of the midline slightly proximal to the left superior cerebellar artey origin.A right posterior communicating artery is not well visualized,the left P1 segment of the posterior cerebral artery and the left posterior communicating artery is not visualized.No evidence of stenosis or aneurysm is seen.Given the complexitity of the region of the basilar artery terminus and that the exact anatomy is difficult to deineate a follow up CT angiography can be performed if desired.

Texas Children's Hospital

We spoke about the CT angiogram and Dr Metry called Dr Clark to see if we could be scheduled in for one.He said that because of the radiation we can just wait and do follow up MRI/MRA every six months.He told Dr Metry if there were any big changes or any talk of surgery he wants us back in Texas.The MRA of her neck showed the dominant right vertabral artery is mildly tortuous.There is a small caliber vessel to the left carotid artery that may represent an anomalous ascending pharyngeal artey.There is early bifurcation of the left common carotid artery at the C6 level.The distal cervical internal carotid arteries are tortuous with loop formation left greater than right.No stenosis or aneurysm is seen.So on the whole things are looking good,but we are still not out of the woods.The biggest relief was no stenosis or aneurysm was seen anywhere.

Dr Metry gave us the big folder that was given out at the 2008 PHACE Conference along with the consesus statement on DIAGNOSTIC CRITERIA for PHACE Syndrome and the Clinical and Laboratory Investigations(we have a lot of reading)She was also going to take all our blood for the registry but needed a consent form from Dr Siegel,she has given us her email and she said we can get blood taken back in Australia and have it FEDEX to Dr Siegel.

She is writing up everything from the appt as well as Dr Clarks findings and emailing them to us so we can give them to our Dr's at PMH.She wants us to continue sending her every test that Jayda has, as she is now on the PHACE Registry.

The hospital was enormous!

CONCLUSION:Tuesday was just one of the best days we have had and to now know that the chance of stroke is less likely than what we knew a couple of months back is a huge weight lifted from our shoulders.The scans were extremely informative and without them we would never of known that what we had been told previously was incorrect.She still said the next 9mths are still critical for Jayda as this is usually the highest time for a stroke to occur if it is ever going to occur.

Texas Childrens Hospital:Jayda's MRI/MRA

2010-02-10T17:40:00.000-08:00

Today Jayda had her second appt at Texas Childrens Hospital for her MRI/MRA.It was an early start for all of us as we had to be at the hospital by 8:00am.Before any testing or Dr's appts you first must pay.Matt went to pay and when they told him how much it was his jaw dropped and we are surprised he didn't faint.When we first got the estimate for the MRI Jayda's last scans had not been sent,but since the Dr's here have reviewed those scans they decided to do a head,neck and chest MRI/MRA.The original cost estimate we were given was $3500 U.S,so when we were told $5456 U.S. we were shocked and that was with a $1000 U.S. discount.

In the waiting room.

We were all taken to a preparation room,which had a T.V. and colouring for Amelia.The nurse then checked Jayda's pulse and blood pressure and then brought out Jayda's favourite (NOT) the stethoscope.The nurse ended up giving us a plastic stethoscope to take home so Jayda would eventually get used to it after having it to play with. Everthing was fine and next was the I.V. line.This is done a lot better than back home with the nurse putting heat packs on both feet so they can get the veins to show and the I.V. was in first time.

With mum waiting in the preparation room.

With dad watching whats on the tv.

Getting the IV line put in (not happy)

Wrapping the IV line with pink elastoplast.

We were then taken down to the imaging room to wait for the aneathetist to give Jayda her general aneasthetic.Tiff held Jayda as the G.A. was given and just like that Jayda was out of it.The scan took about an hour and a half and we made our way to the recovery area.

Waiting for the GA.

Getting the GA.

Going into the MRI/MRA machine.

The nurse was holding Jayda and she still had her eyes shut but was making some very pleasant sounds,it was unusual to here a child happy after being under a general.Jayda knew as soon as she heard our familiar voices that we were back.Jayda seems to come out the anesthetic quite quick and she recovers very well.We then put in a request for the scans to take home and right away they were given to us.This is very different again to back home as our hospital will NOT give you any imaging unless the Dr's requests it and that is why it took so long to get Jayda's scans sent to Texas Childrens Hospital.

In the recovery room.

So on a whole today was a pleasent experience and again so much different to back home.It has just reinforced us that by coming here Jayda is being seen by some of the best Dr's in the world

Texas Childrens Hospital:Jayda's first appt

2010-02-06T11:11:00.000-08:00

Jayda had her first appt this week with Dr Gary Clark who is the chief of Pediatric Neurology at Texas Childrens Hospital.He was extremely nice and we felt very comfortable with him.He looked over the scans that PMH had sent but unfortunately they did not send complete scans so he was unable to get a good view of everything.What he could tell us is this.Jayda's internal carotid arteries are quite large and they are supplying ample blood flow to the brain for the time being.He said that the previous MRI/MRA that showed the high grade stenosis of her basilar artery could be a little deceiving as her ICA are suppling the blood from the front of her brain and that the MRI/MRA might think there is a blockage.He really didn't want to say to much until her MRI/MRA next week.We asked about surgery but he said this area of the brain is very difficult to go into and the risks are very high.We were also introduced to a pediatric stroke Dr and aspirin was dicussed and for now we will not put Jayda on it.Dr Clark was very happy with Jayda's development and surprised that she is walking her self around furniture.So we just have to wait until next week after MRI/MRA and things should be more clearer.

Houston we have landed!

2010-02-01T18:52:00.000-08:00

Well we do we start?Our trip was going well until we hit San Francisco where our plane was delayed and by the time we reached Denver we had missed our connecting flight to Houston.The airline put us up in a hotel, gave us dinner vouchers and kept our luggage ready for the flight out in the morning.Now for those in Australia it is winter here and so we were confronted with freezing tempretures and snow and we weren't prepared(clothing wise).This was the first time any of us has seen the snow.When we finally made it to Houston and went to collect our luggage we find out it is still in Denver.Not happy since we had been in the same clothes for nearly two whole days.The airline got it on the first flight and Fedex dropped it off about 5pm at our hotel in Houston,Thank God!!!

Today we went out and looked around where we are staying and we are just amazed how big Houston is,there is nothing in Australia to compare this city to(it is HUGE)The road systems are so complex and the highway is a maze of concrete overpasses.We have come to the conclusion that everything in America is big,the cars,the roads,shops and products and even our microwave and oven in the hotel is abnormally big for what we are used to. We have decided to try the same fast food resturants here that we have back home to compare the taste and there is definately a difference,KFC tastes great here and there is a huge (again I use that word) selection on the menu.

We also went the Texas Childrens Hospital to meet Laura the International Patient Co-ordinator.The hospital is massive and again nothing to compare to back home.The set up is great there is more than one major building that all connect together with in door bridges,the interior is well suited for children beautifully presented.Both of the girls were given a gift from the hospital and we were taken on a tour.It is amazing and makes you think what is happening in Perth?

The people here have been so nice to us and they just love the girls.Also they don't stare at Jayda like they do back home and that has made us feel good especially as Jayda's Hemangioma is growing again.Jayda now see's the Neurologist this week and they are trying to push forward her MRI/MRA to this week,if not it will be next week as planned.

America here we come!

2010-01-26T01:22:00.000-08:00

We are all packed and ready to go,I can't help but think we've forgotten something...I'm sure I'll think of something when we're half way across the ocean! It will be an early start leaving here at 3.30am to get to the airport,then a 5hr flight to Sydney. Once we stop in at Syndey we change to the International airport and make our way to San Fransisco 14 hrs away! Once we are in San Fransisco we head to Denver and then finally reach our destination Houston! Heres hoping we don't run into any trouble(delayed flights,lost luggage) and have a smooth trip. Keep following us for all the updates while we're away,talk to you all soon.

Amelia's 3rd Birthday and my first rock concert

2010-01-16T19:32:00.000-08:00

Amelia celebrated her 3rd birthday in true rock style. Spending the morning opening her presents and dancing along to her new CD player we then had a sausage sizzle and finished off eating her "meeli bug" birthday cake (Meeli bug being the nickname we've given her).As the afternoon approached we headed out to a reserve where dad was doing lights for a Kiss tribute band called Kiss Alive. Dad is a huge Kiss fan and it was always going to rub off onto the two girls. Amelia and her big brother both got their faces painted, Amelia as the star child (Paul Stanley) and Kade as spaceman (Ace Frehley). Amelia had been excited all day,she kept asking to see Paul,dad took her backstage to see the guys getting ready with their make-up and costumes,you couldn't wipe the smile off her face.The loud music,the flashing lights and the cool pyrotechnics made the day a birthday to remember. After the concert Amelia and her dad even had their photo taken with the band. The night ended quite late and I must say I'm quite surprised that Jayda out lasted Amelia,with Amelia falling asleep on the picnic rug. Something tells me that this will definitely not be their last rock concert!

Update on Jayda's achievements

2010-01-05T00:19:00.000-08:00

Well Jayda is now 8 and a half months old and I can't believe how much she has changed. Jayda is in the process of having 4 teeth come through at once,all up the top and I can't say she is pleased about it. Although her teeth are enabling her to try new foods,which she loves to do,they are keeping her up at night.

Jayda has now found her rhythm when it comes to crawling,we weren't sure if she was going to because she was becoming very found of rolling everywhere. It had only taken a couple of days of crawling forward a few paces for her to eventually figure out that she could get to places faster this way rather than rolling and becoming stuck up against a wall or under a chair somewhere.

At the same time as Jayda was getting the crawling down pat she had started to use the furniture to pull herself up onto her knees. That only took her a few days before she realised she could get even higher by standing on her feet,this we weren't expecting her to do on her own yet. Everywhere she crawls whether its to the bathroom or the bedrooms she goes to a wall or piece of furniture uses her hands for support and pull herself up,she is even becoming a little too confident for our liking that she stands there against the wall with only one hand as support....scary!!!!

I must say that Jayda being able to get to places on her own has been a good thing but there has been a down fall to it too. She is getting into things she shouldn't be. I can tell you now Matt is getting quite frustrated when she crawls to his DVD player and bangs on it like a drum,I don't think the laser inside it appreciates it very much. But now at least she can follow me or her sister anywhere in the house,better to have her happy then grouchy when there are things to do around the place.

Jayda has also had her dermatology visits reduced to 3 monthly. The hospital is happy with the birthmark at the moment especially because she has been off the propranolol for 1 month now. She is doing it for herself and there hasn't been any signs of regrowth,thank goodness! We were told that sometimes the hemangioma can have a relapse but we know what to look out for and if this occurs she'll be put back on the propranolol. Laser treatment on the birthmark will be discussed when Jayda is over the age of 2yrs,by this stage it may have started to fix itself but she may need some touch ups in areas,but that is way off to worry about at this point in time. As for Jayda's arterial anomalies we wont know of any changes until she has her next MRI/MRA which will most likely be done in Texas,which is when she'll be next due for one. At the moment all we can do about the blockage is wait and see how well the other arteries compensate for the flow of blood to that area of the brain. We still haven't been told if she should be on aspirin,there has been division between the doctors here whether this will be beneficial for her or cause more of a problem in the future. Hopefully we may get more answers in 3 weeks when we get to Texas!

My first Christmas

2010-01-04T23:25:00.000-08:00

A bit late but here are some pics of Jayda's first Christmas.Jayda had to be woken up as her older sister was very keen to see what Santa had left under the tree.Jayda was able to tear off the wrapping with a little help and if not quick enough Amelia would open them for her.Nanna, Pop and her aunties came over later where she got to open even more presents. By the end of the day Jayda was exhausted I think it was all the presents she opened and being in the presence of great company.

Accommodation booked

2009-12-11T20:43:00.000-08:00

Our hotel is now booked for our 3 week stay in Houston,Texas.We are staying at the Marriot Residence Inn,Reliant Park.It is fully self contained so we are able to cook our own meals etc.It is only a short distance from the hospital and it has a shuttle service to the hospital.So now with our flights and accommodation booked and our appointments made we are ready to go.

Auction Success

2009-12-10T01:07:00.000-08:00

On Sunday we held our silent auction at the GONELLS FOOTBALL CLUB.We had spent hours the night before gift wrapping the items and getting everything in order. Matt started his first trip of dropping things off at 9:00am.The day started very slow and for a time we were getting quite worried.By 3:30pm we started to get some people in and some activity in the bidding,and an hour later when we started our big auction most items had bids on them.The raffle for the hamper we put together was selling really well,having an estimated value of $1300 worth of goods.We started our main auction and we were surprised at how well some things went for.So we can now announce our total for the day was $7370.This total is made up of silent auction,main auction,raffle tickets,100 club and a surprise donation from Kimbo from the CORFIELD TAVERN of $823.We would very much like to thank Bob Uttenbrook of the Gosnells Football club,who in a short space of time Bob had got a huge amount of goods for the auction.Thanks to Norm Barratt of the Gosnells Football Club.Norm is the outgoing president and he donated a custom made esky for the auction, he is top bloke and our family were touched by his generosity and the kind words he spoke.A huge thanks to our neighbour Steely ,also member of the football clubs committee for his efforts in getting auction items and selling raffle tickets. We would also like to thank THREEPLAY Acoustic for playing for the first part of the day.

THREEPLAY Acoustic

Thanks to everyone.

2009-12-09T05:57:00.000-08:00

Both Tiff and I would just like to thank a few people and businesses for their support.Cally at PRO AUTO.Renee and Nat at ADDICTED 2 HAIR.David at GIBBONS HOLDEN.Bob,Trevor and Steely at GOSNELLS FOOTBALL CLUB.Elisha at the ABN Foundation.Kimbo at CORFIELD TAVERN.W.A. CHARITY DIRECT.Lorraine and Del A'Court.Hayley White and K.L.I.A.Martin Dillon at PINE RIVERS RSL QLD.To all the people and businesses not listed you are not forgotten and we have tried to list all donations so thank you to everyone for your support and we hope for your ongoing support.We have met some absolutely tremendous people and your generosity is greatly appreciated.

Flights booked.

2009-12-09T05:33:00.000-08:00

We have now booked our flights for our long journey to Texas.Leaving from Perth on the 27th Jan 10 and arriving in Houston 22 hrs 19 mins later if all goes to plan.We have a couple of stop overs in Sydney,San Francisco and Denver,so that will be good for the kids.Thanks to Elizabeth Anderson at FLIGHT CENTRE Forrest Lakes for booking our flights and taking no commission this saved us a lot of money.

Auction Items

2009-11-30T05:33:00.000-08:00

GOSNELLS POOL AND SPA:Various pool products valued @ $200
PRO AUTO:Car service valued @ $180
WATERSHED WINES:1 dozen mixed bottles of wine valued @ $360
NEXT GENERATION FITNESS,Bibra Lake:2 x 8 visitor passes valued @ $99ea
MURL INTERNATIONAL:2 x Remote controlled helicopter valued @ $240ea
No1 NAILS:Full set of nails valued @ $50
GOSNELLS HOTEL:Voucher for dinner valued @ $60
ADDICTED 2 HAIR:Voucher for a shampoo,cut,blow dry and eyebrow wax valued @ $80
LIZ GARNET:1hr Photography sitting at your home + 8, 8"x10" photos valued @ $300
GOSNELLS AQUARIUMS AND PUMPS:4 X Submersible pond pumps valued @ $25ea
JET CYCLES TACKLE AND DIVE:Various billiard and darts accessories valued at $250
HEAVENLY SKIN:1 x facial & non surgical face lift & hand massage valued @ $80
BARBECUE BAZAAR : LORRAINE:Stainless steel BBQ tool set,fish grill and deluxe meat thermometer valued @ $250
EZYFLIGHTS:Voucher for 2 x Economy flights to Brisbane,Gold Coast or Cairns.Winner must pay $49 ea for connecting flight from Sydney and book a minimum 7 nights accommodation at an affiliated resort ranging from 3 & half to 5 star.Winner has 1yr to book holiday and 2yrs to redeem voucher valued @ $950
POT BLACK,GOSNELLS:Pool cue and case valued @ $150
DEL & LORRAINE A' COURT:SYDNEY FC Jumper signed by team(including socceroos)
STEELY:Signed picture of Carlton Football great Peter Bosustow in his 1981 Mark of the year.
BARBEQUES GALORE:Outdoor lantern,cake plate w/server,chip 'n'dip set valued @ $105
EAST FREMANTLE F.C:Signed Football Jumper(including Keer,Sandilands,Hasleby,Staker,Kennedy,Peake)
GOSNELLS F.C:Custom aluminium esky filled with alcohol valued @ over $500
CITY MOTORS HOLDEN:HSV Shirt,wheel balance & rotation valued @ $120
PERTH GLORY:Signed soccer ball and shirt
FERRARI MENSWEAR:Voucher valued @ $150
SWAN YACHT CLUB:2 Dozen bottles of wine
BENDIGO BANK:CAROUSEL Shopping voucher valued @ $200
CLUBS W.A. :Beer & wine
PRO AUTO:Sonax(Penrite oil) car care pack valued @ $140
GIBBONS HOLDEN:Car service including vaccum valued @ $200

A BIG THANK YOU

2009-11-22T03:02:00.000-08:00

We have had some great news this week in regards to our airfares.A couple of months ago I wrote a letter to the ABN FOUNDATION who are a charity and they passed on our letter to W.A. CHARITY DIRECT.After talking with Mr Peter Carter one of the trustees we decided to fill in the formal application and ask them to assist with our airfares.So after our bad news on Monday we had some fantastic news on Wednesday.W.A. CHARITY DIRECT are going to assist with our airfares this is a major contribution and along with GIBBONS HOLDEN our airfares are now covered.We as a family sincerely thank both Gibbons Holden and W.A. Charity Direct for their generous support.

MRI Results

2009-11-16T05:05:00.000-08:00

Just a brief description of Jayda's neurology appt today.We had some good and bad news so the good first.Her hemangioma behind her left eye has shrunk to nearly nothing and that her brain is developing on track ,a big relief.Now for the bad news.Jayda has developed a blockage in her basilar artery,at the moment another artery is compensating for this but the risk of her having a stroke is now quite high.

The neurologist is passing these results on to a arterial specialist for further opinion on a plan.Continued monitoring eg: frequent MRI/MRA or even surgery as an option.But we just have to wait and see what the specialist says.This has changed many things for us so we really need those donations coming in or silent auction prizes.

Bring on summer!

2009-11-12T20:36:00.000-08:00

As the weather is getting warmer we've been getting the backyard pool ready for swimming. It was a hot and humid Wednesday when I decided to take the girls for a swim in the afternoon. I hadn't yet bought Jayda any bathers but funnily enough a pair of Amelia's bathers from last year fitted perfectly, I guess that's one of the benefits of being bigger than average.

Amelia loved the pool last summer but was a bit apprehensive this time round, I believe it's an age thing,she wanted dad to take the creepy crawly out so it wouldn't get her! As for Jayda she had no concern about being in the chilly water but she did have a tight hold on me. Jayda was more comfortable in the floaty ring, she loved it.The two of them then sat on the pool lounge and just laid there relaxing. I definitely think this summer the pool will be put to good use.

Silent Auction Update

2009-11-06T22:57:00.000-08:00

We now have the venue and date confirmed for our silent auction.In addition to the auction there will be a sausage sizzle and band.

VENUE:Gosnells Football Club corner of Walter st & Terence st,Gosnells
DATE:Sunday 6th,December
TIME:12:00pm-6:00pm

SAUSAGE SIZZLE:1:00pm
BAR OPEN:1:00pm-6:00pm
LAST BIDS:4:30pm

GOOD LUCK BIDDING & HOPE TO SEE YOU ALL THERE

Sausage Sizzle Success

2009-10-25T03:32:00.000-07:00

Friends and locals buying a sausage.

Cooking the snags.

Yesterday's sausage sizzle out the front of Addicted 2 Hair on Ashburton Drive was a great success. Even with the weather looking ominous,the turnout from our local and greater community was fantastic. There were people who came down especially to meet Jayda,who were touched by our story. The people made us feel in turn, touched by their generosity. Some who didn't want a sausage made a donation or bought a reminderband to contribute to the fund raise. In the end a total of $1700 was raised. We would like to say a big thank you to Addicted 2 Hair Renee and Natalie,their husbands who cooked and served the sausages, Renee's mum and dad from Hey You Pet Resort and all other contributors whether it was for the rolls,sausages and drink donations,or the many people who gave up their time and opened their wallets for what we know is a great cause.

Us getting involved.

Jayda very tired and over whelmed by the day.

Texas Update

2009-10-21T05:56:00.000-07:00

The Texas Children's Hospital have sent us appointment times and cost estimates for Jayda's evaluation there.

We are booked in to see Dr Clark the Neurologist at TCH on the 4th of February 2010. Our plans are to depart Perth 27th of January and return on the 10th of February. This may change depending on the outcomes of neurology appointment.

Our estimated costs are as follows:

AIRFARES:$9,000
ACCOMMODATION:$1,500 U.S.
MRI:$3,500 U.S.
NEUROLOGY:$120.00 U.S.
PHYSICIAN:$346.00 U.S.

We have raised nearly $4,000 so far and with the sausage sizzle,silent auction and everything else going on,our target is looking not too far away. So a BIG THANK YOU to everyone who has supported us,it's hard to thank everyone individually in person but we do appreciate it.

We'll keep you updated on the fundraising tally and any other booked dates.

Raffle

2009-10-17T03:08:00.000-07:00

For those coming to the sausage sizzle we are going to be selling raffle tickets.The tickets are $10ea with the proceeds being divided between us and the WAFL.Bob Uittenbroek of the GOSNELLS FOOTBALL CLUB has kindly offered to do this for us.There are some fantastic prizes and they are;

1ST PRIZE-A TITAN FORD TERRITORY 2009 TX 5 SEAT AUTO RWD valued @ $44,000
including 6mths licence,rego and stamp duty.

2ND PRIZE-Corporate Suite,Subiaco Oval valued @ $9200
Fantastic suite for 16 people including food,drinks and parking for an AFL game at Subiaco Oval.

3RD PRIZE-AFL Footy Fanatics Melbourne Weekender valued @ $3000
Return Airfares,2 nights accommodation,2 reserved seats to an AFL game of your choice.

4TH PRIZE-LG 42"PLASMA PQ2O SERIES TV valued @ $1,699

BOOK BUYER'S PRIZE valued @ $3,900
A trip for two to Broome staying for 5 nights at Cable Club Resort.

We are not the only people selling these tickets,only tickets sold through us will be supporting Jayda.The raffle ends 20/05/10 and will be drawn on the 15/06/10 Winners will be notified and results published in The West Australian on the 18/06/10.GOOD LUCK!

PHACE Syndrome Registry

2009-10-16T02:26:00.000-07:00

We finally received Jayda's registration papers from Texas Children's Hospital today.This means that Jayda will now become one of 250 patients worldwide to be included in the research being conducted by the Texas Children's Hospital/Baylor College of Medicine.This research registry is designed to help clinicians and basic scientists understand the cause of PHACE Syndrome,which may help lead to treatment and prevention.The registry also serves as an educational resource for families who are interested in learning more about this syndrome.

Local celebrity

2009-10-16T01:30:00.000-07:00

Jayda has made the front page of our local newspaper Gosnells Examiner. The paper mentioned the upcoming sausage sizzle hosted by the girls at Addicted 2 Hair. It also covered our plans to get to the United States and Jayda's journey through all of this so far. We would to say a big thank you to Julian Wright for taking his time to put our story out there amongst the community. We hope that this will help to raise some awareness and also help towards our fundraising efforts.

Look how far I've come!

2009-10-15T07:24:00.000-07:00

Since Jayda turns 6 months in two days I thought I'd show just how much change there has been in Jayda's hemangioma and her own growth too. Jayda had weighed 3.3kgs when born and had what appeared to be a small bruise on her cheek. Jayda is now just under 8kgs and her hemangioma had been through its own growth phase too. The hemangioma started to grow rapidly during the first few weeks that she was home from the hospital. It was no longer isolated on her left cheek,it had spread from her forehead down to her top lip,and also on her right forehead and eyelid. It had gone from a light pink to a fiery blistery red appearance.

At 2 months of age Jayda started her dose of oral steroids. This not only effected the growth of the hemangioma it also made Jayda grow ( Buddha baby) one of the many side effects of the steroids. As Jayda grew and the hemangioma faded,we had her heart assessed and were given the all clear to start her on Propranolol,she was 3 months old. This has less side effects and meant she could be slowly weaned off the steroids.

By 4 months of age Jayda was weaned off the steroids and her hard solid cheeks were softening. The propranolol was keeping the hemangioma from growing and it had started to appear a light pink again. Jayda was still growing at a good rate,but she will always be a lot bigger than what he older sister was like.

At 5 months of age Jayda is still on the propranolol and will continue to do so until the hemangioma starts its involution phase. The light pink appearance of the hemangioma isn't the only noticeable aspect of it,she has lots of spider like veins through it. These may not disappear with the use of the propranolol but we have been told laser treatment would most likely be needed later on. But for now our main focus is dealing with her PHACE Syndrome and the anomalies associated.

Sausage Sizzle

2009-10-13T20:09:00.000-07:00

Just a reminder to everyone that the sausage sizzle is coming up.The girls at ADDICTED 2 HAIR have organised this.Cheers girls.So come on down meet the family,have a snag and get yourself a reminderband.

VENUE:Ashburton Shopping Village,Ashburton Drive,GOSNELLS
DATE:24th October 2009
TIME:11:00am-2:00pm

DONATIONS

FOODWORKS GOSNELLS:150 Sausages
BAKERS DELIGHT THORNLIE:50 Buns
BRUMBYS GOSNELLS:50 Buns
SUPA IGA GOSNELLS:50 Buns & 50 sausages
TIP TOP BAKERIES:9 Dozen buns
ILONKA FOODS:120 Sausages
HEY YOU PET RESORT:Soft Drinks

A Big Thank you

2009-10-08T02:16:00.000-07:00

I wanted to post this up separately to our other donations.I have just received a phone call on a big donation.GIBBONS HOLDEN in Gosnells is donating a $1000 towards our travel to the U.S. This is huge for us as our travel costs are about $10 000.So a big Thank you to Andrew Stott,David Britton and the rest of the team at GIBBONS HOLDEN.The support we have had from our local community has been fantastic and our whole family is very grateful to you all

Silent Auction and Donations

2009-10-04T23:01:00.000-07:00

We are getting some great items for our silent auction and some big donations.I think we will have the auction in early November that gives me plenty of time to get more prizes,book venue,advertising etc.As we get more prizes I will add them on.

SILENT AUCTION PRIZES

GOSNELLS POOL AND SPA:Various pool products valued @ $200
PRO AUTO:Car service valued @ $180
WATERSHED WINES:1 dozen mixed bottles of wine valued @ $360
NEXT GENERATION FITNESS,Bibra Lake:2 x 8 visitor passes valued @ $99ea
MURL INTERNATIONAL:2 x Remote controlled helicopter valued @ $240ea
No1 NAILS:Full set of nails valued @ $50
GOSNELLS HOTEL:Voucher for dinner valued @ $60
ADDICTED 2 HAIR:Voucher for a shampoo,cut,blow dry & eyebrow wax valued @ $80
LIZ GARNET:2hr Photography sitting valued @ $300
GOSNELLS AQUARIUMS AND PUMPS:4 X Submersible pond pumps valued @ $25ea
JET CYCLES TACKLE AND DIVE:Various billiard and darts accessories valued at $250
HEAVENLY SKIN:1 x facial & non surgical face lift & hand massage valued @ $80
BARBECUE BAZAAR : LORRAINE:Stainless steel BBQ tool set,fish grill and deluxe meat thermometer valued @ $250
EZYFLIGHTS:Voucher for 2 x Economy flights to Brisbane,Gold Coast or Cairns.Winner must pay $49 ea for connecting flight from Sydney and book a minimum 7 nights accommodation at an affiliated resort ranging from 3 & half to 5 star.Winner has 1yr to book holiday and 2yrs to redeem voucher valued @ $950
POT BLACK,GOSNELLS:Pool cue and case valued @ $150
DEL & LORRAINE A' COURT:SYDNEY FC Jumper signed by team(including socceroos)
STEELY:Signed picture of Carlton Football great Peter Bosustow in his 1981 Mark of the year.
BARBEQUES GALORE:Outdoor lantern,cake plate w/server,chip 'n'dip set valued @ $105
EAST FREMANTLE F.C:Signed Football Jumper(including Keer,Sandilands,Hasleby,Staker,Kennedy,Peake)
GOSNELLS F.C:Custom aluminium esky filled with alcohol valued @ over $500
CITY MOTORS HOLDEN:HSV Shirt,wheel balance & rotation valued @ $120
PERTH GLORY:Signed soccer ball and shirt

DONATIONS

WACKET:Paul $250
ACS TECHNOLOGIES:Andrew and Richard $600
DISTINTIVE TROPHIES and BADGES:$50
ANZ GOSNELLS:Melissa $20
JOHN HUGHES:$250
LS1 FORUM:Various member contributions $100
GIBBONS HOLDEN GOSNELLS:$1000 towards travel expenses
CAROUSEL DENTAL:Cy and Anis $500
KARRATHA L.I.A.:$640
IAN-ILONKA FOODS:$500
LANGFORD HOTEL:$250
GOSNELLS LIONS CLUB:$500
PERTH MEDICAL LAB:$1000
PINE RIVERS RSL Sub Branch QLD:$1000
PINE RIVERS LADIES RSL Auxillary QLD:$1000
KARRATHA L.I.A.:$695
BARBECUE BAZAAR:$100
W.A. CHARITY DIRECT:Balance of flights approx $4500
JOHN ELIOT & WORK SOLLUTIONS:$228
PETA & NEVILLE MOSES:$500
WORDWIDE ONLINE PRINTING GOSNELLS:50 x Laminated flyer's to go with our money tins,100 flyers,500 raffle ticket books
GOSNELLS FRAMING GALLERY:Framing of Sydney FC Jumper

Reminderbands

2009-10-03T06:38:00.000-07:00

Well these have been selling like hotcakes, so I have ordered another 500.If you want to purchase one you can get them at ADDICTED 2 HAIR,PRO AUTO,CAROUSEL DENTAL,GOSNELLS WOMENS HEALTH CENTRE,CENTRECARE Gosnells,NEXT GENERATION FITNESS,Bibra Lake.They will also be sold in BUGGLES CHILD CARE CENTRES across W.A.or you can buy one through us.Thanks to everyone for supporting Jayda's PHACE Journey :)

My first Perth Royal Show

2009-10-02T00:38:00.000-07:00

On Thursday the 1st of October we visited the Perth Royal Show. The weather was lovely sunny and warm. Our adventure started off with a train ride to the show grounds which is one of Amelia's favourite things to do. On arrival to the show the first attraction we visited was the Pigeon and Poultry Pavilion,it was filled with all varieties of pigeons and roosters. The noise coming from the cages was amazing who knew there were so many types of roosters? We then visited the Dog Pavilion,it had many breeds of dogs all of which were award winning for various reasons.

With Amelia's pleas we then headed off to the Kiddies land where there were rides and games for the kids. Amelia and myself went on a flying elephant ride, her dad and herself went on the merry go round and the spinning tea cups rides. She also tried her luck at the laughing clowns and pick a duck games.

The Farm Animals Pavilion was an all round favourite. Jayda enjoyed watching the kids (baby goats) play and climb. Amelia liked the cows and bulls and even the timid wombats. The baby ducks and chickens were my favourite along with the rabbits.

Then it was off to Sideshow Alley, just for the big kids. Kade had fun on the ghost train ,bumper cars and the Nitro ride. Considering all the screams, noises and flashing lights Jayda was sound asleep, exhausted from a big day out.

Finally the best part of the show and the only way to end the day,we watched the fireworks. This surprisingly didn't scare Jayda she was just taken in by the bright explosions in the night sky.

Reminderbands

2009-09-29T19:22:00.000-07:00

Our reminderbands have arrived and i will start getting these out asap.We have decided to sell them for $5.00 ea,i have three sizes L,M,S.So get in quick i only got a small amount to start off,i will order more when we have half left.I am hoping that these will do well.

Reaching My milestones

2009-09-28T00:36:00.000-07:00

At 5 months of age,Jayda has two of her bottom teeth coming through. Constantly putting everything she can get her hands on into her mouth, her teething rings are coming in handy.

Jayda loves to squeal and coo, her other favourite sound is blowing rasberries.

Jayda is now sitting up all on her own but she still looses her balance when distracted,thank goodness for pillows. Jayda has found her feet and when lying on the floor she wants to have them in her mouth. She likes to reach for everything she can see and at times nearly rolls over to her stomach.

BBQ on the river

2009-09-27T23:37:00.000-07:00

Taking advantage of the warm spring weather yesterday, we went for a BBQ along the river at Mason's Landing. One of our old time favourite picnic spots hidden away along the Canning river surrounded by the wildlife and bush. Amelia and Kade had fun on the playground and kicking the footy around. While Jayda enjoyed herself on the rug and being out in the fresh air. Dad cooked a tasty dinner on the BBQ and mum sat back to soak up the sun and relaxed.

Tadpoles in the river's beds and ducks waiting to be fed. The chance for Amelia to get her feet dirty in the mud. Kade racing along the footpaths on his scooter, and Jayda doing what all babies do best had a sleep in the pram. Over all the day was lovely and we all can't wait for the warm sunny days to come.

DONATIONS :Thank You's

2009-09-25T02:51:00.000-07:00

I thought i better get a list up of donations that we have so far.Again excuse me if i have missed something or made a mistake(i tend to forget things) Cheers Matt

GOSNELLS PRINT-500 flyer's for sausage sizzle

SAUSAGE SIZZLE

FOODWORKS GOSNELLS-sausages
BAKERS DELIGHT THORNLIE-50 buns
BRUMBYS GOSNELLS-50 buns
HEY YOU PET RESORT-soft drinks

SILENT AUCTION PRIZES

GOSNELLS POOL and SPA-$200 worth of goods
No1 NAILS-Voucher
GOSNELLS HOTEL-Voucher
PRO AUTO-Car Service
DAVE-RC Helicopter

DONATIONS

WACKET-Paul $250
DISTINCTIVE Trophy and Badge Supplies-$50
Melissa ANZ GOSNELLS-$20

REMINDERBANDS, BANK ACC and TEXAS

2009-09-23T04:56:00.000-07:00

We got an email today confirming that our reminderbands have been shipped,this should take around 7-10 days.I have bought some money tins,I'm just trying to get someone to donate their time and business to make up some flyer's to put on the tins.I also need the flyer's to hand out to businesses.Basically something with a colour picture of Jayda,what her benefit is called and a bit about her and what she has.I have had a price,but if someone wants to do this as their donation that would be GREAT!

I have been back in contact with the bank,the account is now set up,it will be held in trust for Jayda,it will not earn interest,it will be set up so people can go to bank and put in the money,it will be run by us for now.We could not call the account Jayda's PHACE Journey as this would mean registering as a business,and then running as a non profit organization.As this charity is just for Jayda the bank has said it can be run like this.The only money that will not be spent directly on Jayda will be for the purchase of more reminderbands,blank DVDs,copy paper and plastic sleeves.We have payed for all that so far and that we don't mind.

Still waiting to here back from TEXAS CHILDRENS HOSPITAL,they have confirmed receiving fax so it's wait and see.I can say that the Dr we have been corresponding with will be personally looking at Jayda's records.She has been wonderful so far helping us enroll Jayda in the PHACE Registry.This is a big thing for us as we feel very strongly about Dr's and researchers being able to learn more,and as PHACE kids are so different to each other.

One last thing the Followers gadget has disappeared this is a Blogspot problem,so if you do want to be one just be patient until it works again.

Cheers Matt and Tiff

SAUSAGE SIZZLE

2009-09-23T04:23:00.000-07:00

Okay date is now confirmed for a sausage sizzle as well as a silent auction.As I have said ,the girls at ADDICTED TO HAIR have organized this.They have had all the food and soft drink donated,I will list the businesses,but mind is blank at the moment.They have also contacted the EXAMINER newspaper and they are going to do a story(and photo) with us and the staff from ADDICTED TO HAIR.I mentioned a silent auction and I will do a list of what prizes there will be.So this is the time,date and place of the sausage sizzle.

DATE: 24th OCTOBER 09

TIME: 11:00AM-2:00PM

VENUE: ASHBURTON VILLAGE SHOPPING CENTRE: 62 Ashburton Drive GOSNELLS

So we hope to see everyone there,if you don't want a sausage I'm sure there will be something to take your fancy in the silent auction.Again thanks to the girls they have a few more things they are trying to do,but I will just keep hush at the moment(IT'S BIG)

Fundraising

2009-09-20T00:36:00.000-07:00

Well as many of you know we are fundraising to get Jayda to the U.S. We have been hard at work writing letters of support to businesses and giving them a DVD copy of Jayda on Today Tonight.We have ordered 295 Reminder bands which have Jayda's PHACE Journey on them,they should arrive early October.Once we get some cost estimates and treatment proposals back from the TEXAS CHILDRENS HOSPITAL i will then approach the ABN Foundation to see how they can help.

I would like to thank these people and businesses for there help so far.Cally at PRO AUTO who is helping in getting ABN Foundation to help us,and the many other ways she has offered to help.Renee and Natalie and staff at ADDICTED TO HAIR who are organizing a sausage sizzle for October.We will let everyone know when dates etc are finalized.

We are in discussions with the bank in setting up an account this will be called Jayda's PHACE Journey Benefit,so once this is set up we can start accepting donations.We did not realise how much work goes into something like this so thank you to everyone for supporting our precious little one.

Our Goal

2009-09-19T04:44:00.000-07:00

Our goal is to get Jayda to the U.S. to the TEXAS WOMENS CHILDRENS HOSPITAL where they have a specialist Vascular Anomalies Clinic and doctors that specialise in PHACE Syndrome.More importantly for Jayda they have the doctors with the experience and expertise to properly evaluate Jayda's anomalies.We are currently in discussions with TWCH and we are now waiting for there evaluation of her medical records and the costs involved.

From the beginning of this journey we have been huge advocates of sharing all we can so that the medical community can figure out what causes this association of physiological abnormalities.We are enrolling Jayda in medical research efforts even though this is being conducted in the U.S. Much research is being done on PHACES but nothing is definitely known and doctors continue to use what limited resources they have to understand why PHACES occurs.

Jayda on TODAY TONIGHT 2nd September 2009

2009-09-19T04:09:00.000-07:00

Late in October Jayda's Pop contacted Today Tonight, they did a story on Jayda to raise awareness on PHACE and infantile hemangioma's.They filmed us at the hospital with our dermatologist and at home.This is the story as reported by Today Tonight's Graeme Butler.

TODAY TONIGHT

September 2nd 2009

Baby Jayda

Reporter: Graeme Butler

At just four months, baby Jayda has little idea of the medical dramas that surround her - a now small blemish on her face is the only visible clue of a condition so rare it still has doctors baffled.

Dr Anne Halbert is a Dermatologist at Princess Margaret Hospital, she's been treating Jayda for what is now known to be "Phaces" syndrome - it's the name given to a series of anomalies of the brain, heart, and eyes associated with the Hemangioma birthmarks - only recognized in 1996, "phace syndrome is the combination of a large facial hemangioma with a range of either brain or heart abnormalities"

A facial Hemangioma is what many people refer to as a birth mark - and they're fairly common - patients with phace syndrome also have these birthmarks - but it's far more serious. Baby's like Jayda can have heart problems as well as enlarged or twisting arteries in their brains... in Jayda's case it's the carotid artery, "what these abnormal blood vessels are going to mean to her in the future we don't know there is the possibility that some of them could enlarge further and become an aneurysm. She could potentially have a stroke or she could lead an absolutely normal life we just don't know" and that "not knowing" is like sitting on a time-bomb for Jayda's parents Tiffany and Matt "we're at a loss where we don't know if she's going to have a stroke or if she's going to be fine and no one's been able to tell us what her future is going to hold and i suppose yeah it's a waiting game".

The first sign that anything was wrong came about a week after Jayda was born as a birthmark appeared and started to spread, "first it started off with just the small area on her cheek and as the days went by we noticed the areas across her forehead were starting come red she had like a white outline so we knew that that want' normal".

"It's very similar to a normal strawberry birthmark, except that it's much larger and it follows a certain pattern" What makes these hemangiomas potentially dangerous is they grow almost with a mind of their own - on the face that can threaten eyesight. "They do have a life of their own and that's the million dollar question is what makes it grow and what tells them to switch off if we knew how to switch them off more precisely it would be a great bonus for us."

Jayda's birthmark is now disappearing thanks to a chance break-through in France where it was discovered that a common drug used to treat high blood pressure had a dramatic effect in stopping and reversing the growth of hemangiomas."At the moment she's on the propranolol, the old heart medicine that we now use and she's remain on this until we're completely happy that the hemangioma is not showing any further signs of growth."

That's great news for parents - who like Matt and Tiffany often are distressed to see a very obvious blemish on their new born while medication is treating the outward signs of the PHACE Syndrome - treating the other conditions is much harder - "is she going to live a full life is another thing that crosses our mind we just don't know."

Tiffany and Matt are just glad they acted quickly when Jayda's birthmark started to grow - they say other parents need to be aware too, "they can grow extremely fast and cause problems that quick that if you don't do something you know you're probably in trouble you've got to act up on it."

Make an on-line slideshow at www.OneTrueMedia.com

What is PHACE Syndrome?

2009-09-19T01:42:00.000-07:00

The acronym PHACES refers to the association of a large segmented hemangioma,usually on the face or neck, in combination with one or more of the anomalies of the brain, heart or eye.

P-Posterior fossa malformations and other structural brain defects
H-Hemangioma
A-Arterial (cerebrovascular) anomalies
C-Cardiovascular anomalies
E-Eye anomalies
S-Sternal cleft defects

PHACE Syndrome was first reported by Dr.Ilona Frieden in 1996. PHACE often presents in the first few weeks of life through a facial hemangioma. PHACE can be diagnosed by imaging of the head, neck and chest. The imaging is usually performed through the form of MRI, MRA, sonography and ultrasound.

Children with PHACE Syndrome will have to be assessed by a number of specialists including dermatologist, ophthalmologist, cardiologist and neurologist. Each child diagnosed with PHACE Syndrome may have different medical issues. Some are mild and some are much more severe.
PHACE was once thought to be rare,but now it is thought as being uncommon with many cases going unrecognised.

(Information sourced through NOVA)

What is a Hemangioma?

2009-09-19T01:20:00.000-07:00

Hemangioma are very common growth of skin that are made up of small blood vessels. They are benign tumours. Quite common, up to 1 of every 10 babies will have one. The hemangioma are usually noticed on the skin within a few days to weeks after birth. At first they are often mistaken as a "bruise" or "scratch". They can occur anywhere on the skin but are most common on the head and neck. Hemangioma have a growth phase of 6-12 mths but most of the growth will usually take place in the first 3 to 4 mths of life. Hemangioma will then have an involution phase which can take a number of years to completely disappear. The growth rate and shrink rate will differ between children and nobody knows exactly what causes a hemangioma. What is known that it occurs more in Caucasian females. Most hemangioma cause no problems and don't need treatment,but there are some uncommon problems that still do occur. Very large segmental hemangioma on the face can rarely be associated with birth defects of the brain, heart or eyes, also known as PHACE Syndrome.

Jayda's Story

2009-09-18T23:16:00.000-07:00

Jayda was born on Friday the 17th of April 2009, at 11.44am. She was 39 wks and 2 days term. Jayda weighed 7lb 3oz and was 52cms in length. Throughout the pregnancy there were no concerns except for low amniotic fluid,which I also had with my first born. It was a natural birth with no complications.

The midwife had noticed a bruise like mark on her left cheek,she had the pediatrician come and look. He said to leave it for a few days and if it hadn't gone then it may be a birthmark. I went home from hospital on the same day and was followed up by midwifery home visits for the following few days. One of the midwives mentioned the mark when Jayda was 4 days old telling us that she thought it was a port wine stain,it obviously hadn't gone away so she contacted the hospital and organised an appointment with the pediatrician.

When Jayda was 7 days old we saw the pediatrician who examined her,telling us that he wasn't certain but he thought it was a port wine stain. Over that week she had also had slight redness from the top of the left hand side of her head running down to the top lip and over her left eye and also over her right eye and forehead, 3 separate and distinctive areas come up. He decided to refer us to a pediatric dermatologist.

Weeks had gone by and we hadn't heard from the dermatologist and Jayda's slight redness had grown and become almost blister like. Jayda's dad didn't want to sit around waiting for a Dr and because we had started researching port wine stains and the connection with Sturge-Webber syndrome we were worried. We took Jayda to the ER at PMH children's hospital and on arrival she was examined and brought straight through to have a Dr assess her. The doctor was informed that there was a possibility of the birthmark being a port wine stain but he soon told us he thought it was a stork bite and that they usually get worse before they get better. At this stage we didn't know who to believe and it was as though nobody could be really sure. He made arrangements for a brain ultrasound for the following day.

Jayda had the ultrasound done and the same Dr told us that the results were normal,and told us to wait for the dermatologist to contact us with an appointment.Jayda was 1 mth old by the time we had an appointment with the dermatologist. At this appointment she told us that she agreed it was a port wine stain and that she needed Jayda to have a MRI on her head to rule out Sturge-Webber syndrome. She was going to start laser treatment then and there but then decided to let us go home and come back in a week when everything had all sunk in.

On this next appointment the look of the birthmark had changed dramatically and the Dr changed her diagnosis with help of a second opinion from a colleague. She informed us that the growth of it had indicated an infantile hemangioma. We had no idea what this was we were just relieved it wasn't a port wine stain or sturge-webber syndrome. Then we were told about the possibility of PHACE syndrome.After being informed that she would need to see an opthamologist,cardiologist and neurologist,we began to worry again.

The Dr started Jayda on a daily dose of prednisolone. This is an oral steroid that would help to keep the hemangioma from growing anymore. Jayda had her MRI on her head later that week. The results showed no Posterior fossa abnormalities or brain development problems,we were only told of 2 arterial anomalies. The dermatologist didn't know much about it just that they were tortuous. Jayda also has hemangiomatous tissue within the anterior left orbital cavity surrounding the lateral,superior and medial margins of the left globe.

We then saw the opthamologist when Jayda was 7 weeks old,he didn't see anything wrong with her eyes, he just wants to review her at 6 mths of age.

We then saw the cardiologist at about 2mths old. She had an ECG and heart ultrasound. They noticed a small hole in her heart but he was sure it was normal and it would close on it's own. He also explained that there was a finding of an aberrant right subclavian artery but it was a normal variant, it was only that we were looking that we knew about it,all was fine. He gave the dermatologist the all clear to start Jayda on another drug called Propranolol.The dermatologist said that this would mean Jayda wouldn't have to be on the steroid for long and that the Propranolol was going to do the same job but with less side effects. She also explained that it was an old drug usually used to treat children with heart problems but was new for treating birthmarks.

We were now being seen weekly by the dermatologist to keep up with the progress of the drugs. The steroid had worked significantly in reducing the redness and thickness of the hemangioma as well as the Propranolol. By 4mths of age Jayda was weaned off the Prednisolone but she is still on the Propranolol.

We finally had an appointment with the neurologist,who hadn't ever had a case of PHACE syndrome,so she invited a neurosurgeon along. They told us that there was a chance that she would suffer a stroke usually between 3mths-18mths of age mostly occurring at 8mths. They weren't completely sure.They said that Jayda had an abnormal circle of Willis with markedly tortuous left cervical internal carotid artery. There was also a nest of tortuous branches arising from the left side of the distal basilar artery,one of which likely represents a tortuous left superior cerebellar artery. The left posterior cerebral artery arises directly from a prominent posterior loop of the internal carotid artery. The right supraclinoid internal carotid artery also appears to bifurcate quite high. They want to see Jayda every 3mths for clinical exams and then redo a MRI at the age of 2yrs.

Jayda has had her dermatology visits reduced to monthly. Jayda is now 5 mths old and the hemangioma hasn't shown any sign of growth. The continual doses of Propranolol are keeping it at bay.

Jayda will be having a MRA scan done anytime now and this will hopefully be able to show us if there has been any change to the arteries.