Here are some pictures of the family......
Nicholas all ready to go to Grandma and Grandpa's house
Ava and I at the eye doctors yesterday
Getting ready for bedtime
Today Ava had her appointment with the Dermatologist. We have found out that Ava has what is called PHACE Syndrome. The link for this specific syndrome doesn't tell us anything that we did not already know. However, it does tell us that there are other children with exactly the same malformations living in the world. This is really encouraging to me because when things are identified, they can be treated more efficiently.
Two days ago, Ava had an appointment with the eye doctor and everything about her eye is perfectly normal except for the facial hemangioma (birth mark on her face). Due to the amount of swelling under her eye, it is harder for her to open the right eye. If she doesn't open it the same amount as her other eye, it can cause development problems in the future. Today at 1:30 Ava will be meeting with a specialist who deals only with facial hemangiomas. We will know much more after that appointment....
Her appointment for tomorrow is with the Neonatologist to inform us of what the plan for her is...we are both pretty nervous. Than we go to see a genetics counselor to hear whether or not we had anything to do with passing Ava any of these concerns....
Ava and I at the eye doctors yesterday
Getting ready for bedtime
Today Ava had her appointment with the Dermatologist. We have found out that Ava has what is called PHACE Syndrome. The link for this specific syndrome doesn't tell us anything that we did not already know. However, it does tell us that there are other children with exactly the same malformations living in the world. This is really encouraging to me because when things are identified, they can be treated more efficiently.
Two days ago, Ava had an appointment with the eye doctor and everything about her eye is perfectly normal except for the facial hemangioma (birth mark on her face). Due to the amount of swelling under her eye, it is harder for her to open the right eye. If she doesn't open it the same amount as her other eye, it can cause development problems in the future. Today at 1:30 Ava will be meeting with a specialist who deals only with facial hemangiomas. We will know much more after that appointment....
Her appointment for tomorrow is with the Neonatologist to inform us of what the plan for her is...we are both pretty nervous. Than we go to see a genetics counselor to hear whether or not we had anything to do with passing Ava any of these concerns....
1 comment:
Hello
I just wanted to say hi,my name is Jen and I am the mom to Quinn who is 2 and has PHACES Syndrome. I found your blog doing a search and thought I would say I and tell you your daughter is beautiful!
I want to invite you to join the PHACES families message forum that I manage which is fantastic,the parents are so supportive and loving. http://groups.msn.com/PhacesAssociationSupportGroup
I also manage PHACES Families and the website is www.phacesassociation.com
You can learn more about Quinn on his we page which is www.quinduncan.com and his blog can be reached by clicking on my user name above this message.
I am also the PHACES family advocate for NOVA www.novanews.org and would love to help in any way I can. Feel free to email me anytime at
all4quinny @ hotmail .com (no spaces)
Hugs to you and your beautiful family.
Jen Duncan
Mom to Quinn
2 Years PHACES
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