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.

Neurology appointment at PMH

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

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.