Brianna Gives Hope: Here we go again....

Tuesday, March 3, 2009

Here we go again....

Little Brianna has ANOTHER ear infection but this one is the worse so far. She tugged at her ears several times which put me on notice but no fever, no crankiness, nothing until yesterday afternoon (of course AFTER the doctor's office was closed). Dark blood oozing out of her right ear. After me freaking out and scaring Jerry who heard me freaking out I called Bri's pediatrician who prescribed an antibiotic for her ear. Of course I have to tell you this itty bitty bottle of antibiotic costs a whopping $103.00. Now isn't that ridiculous?!!! But whatever we need for the Bri, we'll take care of it. Anyway, after a dose of tylenol and ear drops, she slept pretty good and we will be off to the doctor's office this morning.

1 comment:

CathyMarch 3, 2009 at 8:47 AM
Oh poor sweet Bri!!! Please let us know what the dr. says after your visit. My oldest had so many infections and still does and he is 27 yrs. old. He doesn't let us know and it ends up bleeding which according to his dr. it has burst. If it burst he gives special drops and antibiotic. It seems to be when his sinus' back up and he just doesn't complain until it is too late.
Praying that Bri will not be in too much pain before they get this under control.
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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

Tuesday, March 3, 2009

Here we go again....

1 comment:

Our Family, Nov 2007

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