Brianna Gives Hope: A Day at the Park

Saturday, May 2, 2009

A Day at the Park

What a nice outing we had today at the park. The weather is just right. Not too hot yet but close. As you can see, Brianna is her usual happy self. Finally, here's a picture of our new puppy, Belina. Wish Ashley could have been here but she has gotten a job (her first) so she is at work today. We missed her for the picnic.

Of course I saved the best picture for last. Once again, I swear I didn't pose Brianna. Actually I was reading when all of a sudden I noticed they were laying the same with their legs crossed. Grabbed my camera as fast as I could.

Isn't that the cutest thing ever?!!

3 comments:

CathyMay 2, 2009 at 5:24 PM
Unbelievable! I love the picture!What a prissy little lady, and no I don't mean Jerry! Thank you for sharing your special day. I am so glad she is feeling better. You can just see it. I hope you are doing well also, brenda and taking care of you! Glad for Ashley new job.
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Yin MayMay 2, 2009 at 11:15 PM
What a lovely moment. It's one of those that really make your day. I can see the 'perfect' in the pictures.
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LindaMay 3, 2009 at 6:53 PM
Awesome pictures!!! cute puppy :)
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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

Saturday, May 2, 2009

A Day at the Park

3 comments:

Our Family, Nov 2007

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