Brianna Gives Hope: So Much to Be Thankful For

Thursday, December 4, 2008

So Much to Be Thankful For

THURSDAY, DECEMBER 04, 2008 09:17 PM, EST
Thanksgiving. Words cannot describe how much we have to be thankful for. Ashley has turned into a remarkable young lady. She went to Eagle Rock, TN for a 4 day retreat with the youth group (but was back in time for Thanksgiving). My mother, sister and her husband, nephew and fiance (and her mother), in-laws, and our 4 enjoyed Thanksgiving at our house. It was a wonderful time. The only thing is that Brianna was not well. A couple of days prior to Thanksgiving she started coughing and was congested. We were hopeful that she could fight it off by herself but Friday after Thanksgiving off to the doctor we went and she was put on an antibiotic and breathing treatments, 4 times a day. That's all it took. By Saturday afternoon, what a change. Whew. The toll it takes on Jerry and I when Brianna is not well is so stressful. You see when she shows the slightest illness we go into combat mode....and I know that I can't help but think....is this it? Is this the illness that is going to be fatal? Don't misunderstand and think that I am a negative person, it's just that anything, we don't know what thing, could be fatal to Brianna. The things that other children brush off (and parent's too) could be what takes her life. Life on the edge. That's what we live. Every day.

No comments:

Post a Comment

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

Thursday, December 4, 2008

So Much to Be Thankful For

No comments:

Post a Comment

Our Family, Nov 2007

Blog Archive