Brianna Gives Hope: February 2009

Thursday, February 26, 2009

So Here We Are

Getting ready for bed....

so I put Brianna in her bed, knowing she is ready for the sand man....go into the room minutes later and this is what i find....

did I tell you that her Physical Therapist said as a general rule...that if a child is sitting up by 2 years of age, that eventually they will walk....yeah, you read that correctly...we believe Brianna will walk...she continues to be such a fighter...nothing keeps our baby girl down......oh my goodness....life is god, I meant to say...life is good....hmmmmm. typo or.........

Wednesday, February 25, 2009

Lots of New Stuff

Well, it has been quite a while since I posted and we've had a lot going on. Earlier this month Brianna was sick with what turned out to be the flu. Battled it like a warrior. Then it turned into congestion, that was the toughest part but in true Brianna form, she conquered it.

She went to the eye doctor and has new glasses...new picture soon. Went to the orthopedic and her back is curving more than we want so she now has a back brace...another new picture soon and....she has an itty bitty split on her hand to see what we can do about her crooked finger, the least of our worries. She continues to be her happy, adorable little self continuously making us smile great big smiles. We are so blessed.

Feel free to post a comment on this new page, I have enlarged the "comment" section at the bottom of each post. To comment, just click on the "comment" and there you go. As I said before, we love to hear from Bri's fans...please leave a small note for us to check out.

Happy day.

Brenda

Saturday, February 7, 2009

3 Little Miracles All Together

MONDAY, JANUARY 19, 2009 10:36 AM, EST
What a weekend! We went to Houston, Jerry, Brianna and myself (Ashley stayed in Orlando to attend a church retreat) to meet little Annabel. Oh, she is gorgeous! Imagine our surprise when not only did we meet Annabel but we also met Rachel who is 9 months old and also diagnosed with Trisomy 18. Three of these beautiful babies in one room. Living and breathing. Bless my husband who was present listening to three women talk about their baby girls. I would say all of us learned something new in caring for our girls.

More later. Bri's fussing for some attention.

This is one of my absolute favorite photos...our little angels

Happy 16 Month Birthday Baby Girl

WEDNESDAY, AUGUST 13, 2008 04:30 PM, CDT
Happy 16 month Birthday to our cutie pie. (A day late...I actually updated the website last night and then the internet blinked off and it was lost...I was too tired to re-type it then). Things are going well with Brianna. She is scheduled for eye surgery on August 22nd. We don't think her little cross-eyes look that bad (I think they're cute in a Brianna-kind of way) but her eye doctor highly recommends that we do it. So....we'll see how they turn out (no pun intended LOL).
I was quite pleased when Bri's OT said that her neck is strong enough to ride in a bicycle seat. Straight to the cycle shop we went. Brianna HATED the helmet. Couldn't stop trying to figure out what the heck was on her head. The guy at the cycle shop said "oh look...she's cross-eyed....(idiot). We just smiled and waited for him to figure out that yes, her eyes DO cross. After that he couldn't get away from us fast enough.
Anyway, she cried so loud in the bicycle seat that when I was down the street, her daddy could hear her and came to her rescue. We'll try again when the weather is not so hot and humid.
Oh, and I almost forgot to mention. Brianna weighs in at a hefty 20 lbs. and now has five teeth. Two front and three bottom front.
God Bless.

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