Brianna Gives Hope: Getting Ready for the Big First Birthday

Wednesday, April 2, 2008

Getting Ready for the Big First Birthday

WEDNESDAY, APRIL 02, 2008 08:27 PM, CDT
Well here we are getting ready for Brianna's one year birthday. Her grandmother is in town and we are planning festivites. Can you believe it?!!!! What a wonderful thing to be celebrating. As I said last week, she is growing by leaps and bounds. As a matter of fact she has outgrown her infant car seat. It was like all of a sudden I noticed her feet sticking right out of the end of her car seat and it was like hmmmm.....better check this out and when I did, although her weight is within the range, her height is not. So, off to the store the family went and now Brianna has a big-girl car seat!
Other exciting news, Fox News will be doing a spiel on Brianna. They found out about her through photographer Martha Bravo. They have already been to our house to interview and tape. Next they will be going with us to Bri's therapy session and also to meet with one of her doctors. When I find out the date of our little movie star's debut, I will post it here on Bri's website.

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Definition of Trisomy 18

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.

But oh, how we love these special little babies. When Brianna was born we were told she would probably leave this earth within 24 hours...but look at her now. 24 months old, healthy, adorable and amazing. God has been so good. Brenda

Bri's Medical Condition

Brianna was full-term born on April 12, 2007, weighing 5 lb 18 oz and 18" long. Her Apgar scores at birth were 8 and 9. Approximately 15 hours after her birth we were advised of the tentative Trisomy 18 diagnosis.

Immediate health issues had to do with her heart: Mainly, a VSD (Ventricular Septal Defect); PDA (Patent Ductus Arteriosus) ; and a PFO.

Open Heart Surgery at 4 months and

G-tube placement before we came home.

Eye surgery in Spring of '08 to correct cross-eyes.

Tubes placed in ears in Fall of '08 hoping to quash the numerous ear infections.

Scan of abdominal section in Dec. '08. Everthing appears normal.

Brianna takes formula by g-tube but eats baby food by mouth. She can hear, see, is rolling over, sitting up, trying to crawl, playing with toys, says "da da"; "do it, do it, do it" and various other sounds. She is the happiest child we have ever known.

We are so very blessed.

Brianna Gives Hope

Wednesday, April 2, 2008

Getting Ready for the Big First Birthday

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Our Family, Nov 2007

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