Brianna Gives Hope

Caleb, Sweet Caleb

2011-08-31T23:04:00.002-04:00

I go through the day with a weak smile on my face. Sweet baby boy Caleb has been touched by the realities of Trisomy 18 and died. Such a harsh word...but I learned that it is one of those words that holds reality, true life, finality. Caleb was here 29 amazing months, so was Brianna. Caleb's death was caused by pulmonary hypertention, so was Brianna's....Caleb gave hope to so many people with babies born with Trisomy 18....so did Brianna.

The pain never goes away, it just softens a little bit with time. God was so good to have shared Caleb, Jeannette, Steven and Caleb's family with all of us, may he continue to bless them during this very difficult time.

Brianna, Brianna, Brianna

2011-08-24T10:42:00.002-04:00

I can see the date on my calendar and my heart breaks. Sept. 3rd will be two years since I kissed your sweet face. It feels like you have been gone for longer than that. Oh how I miss your morning snuggles. Love and miss you so very much baby girl. Forever in my heart.

Happy Birthday Sweet Bri

2011-04-12T07:52:00.008-04:00

What of my favorite pictures...

Today you turn 4 years old....and I can only imagine the birthday party you are having in heaven. How difficult this path of grief is to follow. Right now your daddy is in the Dominican Republic on his second (men's) mission trip. Your sister is in Fort Worth, Texas living with her brother, wife and little girl, who is 15 months old, and helping her heal her broken heart. My plans are to go on a mission trip later this summer to visit several orphanages. The message sent to us through you from Christ continues to change our lives for the better. Oh how we miss your silly, happy smile and morning snuggly hugs.

Here are some pics from Bri's short life here with us. Many of them make me smile with such happiness. As I have said at least a hundred times, she was the happiest child I have ever known.

Me and my Daddy in Chicago

My Favorite Chair

Bri's visit with Annabel

Halloween....Chicken Little

Reading with my Sissy

Bri Loved being outside in her swing.

Getting Lots of Love..It was Her 2nd Birthday With Us

Ashley babysitting (!!) in Chicago...Isn't it the cutest!

Chillin' With My Dad

Bri was always a determined little girl...out to prove that T-18 babies CAN learn and deserve a chance just like every other child on this earth.

"Death leaves a heartache that no one can heal.
Loves leaves a memory that no one can steal."

Forever in our hearts.

Thinking of you Bri

2011-04-01T00:15:00.002-04:00

It's almost your birthday....I bet Ms Debbie will be throwing a big one for you in heaven. Miss you sweet baby girl.

Ma Ma

Oh the Holidays...

2010-11-30T11:01:00.002-05:00

Oh how the holidays wreck havoc on one's soul. At Thanksgiving, I gave thanks to God for our family, both here and in heaven (or heaven forbid.....elsewhere), thanks for Ashley getting a job at Disney, thanks for my husband, he is such a good man, thanks for having had our little Bri for 28 months, thanks for our entire family, the list goes on and on. Yet, there's still that place in my heart that is empty. I know Bri will be celebrating the upcoming Season of Advent with the Best and I just have to keep the vision of that in my head and heart.

Check out this Sweet Baby Girl, Lilly

2010-11-01T09:22:00.005-04:00

http://pray4lilly.blogspot.com/

What a sweet little girl and she reminds me so much of what Bri looked like at that age. The paragraph below is a post made by Lilly's mother that I want to share. I applaud Rick Santorum for his wonderful writing ability.

Today I read an article by former Pennsylvania Senator Rick Santorum, who's youngest daughter, Bella, has trisomy 18. The article, written May of this year, was celebrating Bella turning 2. (Yay!) As I read the article, I identified with so much of what Mr. Santorum said. It seems like so many of us that give birth to a trisomy 18 baby have the same sorrows, battles, and incredible joy. You can read the article below.

The Elephant in the Room: Two years worth every tear

The columnist's daughter has lived despite every dire prediction.

By Rick Santorum
'Incompatible with life." The doctor's words kept echoing in my head as I held my sobbing wife, Karen, just four days after the birth of our eighth child, Isabella Maria.

Bella was born with three No. 18 chromosomes, rather than the normal two. The statistics were heartbreaking: About 90 percent of children with the disorder, known as trisomy 18, die before or during birth, and 90 percent of those who survive die within the first year.

Bella was baptized that day, and then we spent every waking hour at her bedside, giving her a lifetime's worth of love and care. However, not only did she not die; she came home in just 10 days.

She was sent home on hospice care, strange as that sounded for a newborn. The hospice doctor visited us the next day and described in graphic detail how Bella would die. In sum, she could die at any time without warning, and the best we could hope for was that she would die of the common cold.

Karen and I discontinued hospice so that we and our amazing doctors, James Baugh and Sunil Kapoor, could get to work focusing on Bella's health, not her death.

Like so many moms of special kids, Karen is a warrior, caring for Bella night and day and, at times, fighting with health-care providers and our insurance company to get our daughter the care she needs.

Being the parent of a special child gives one exceptional insight into the negative perception of the disabled among many medical professionals, particularly when they see your child as having an intellectual disability. Sadly, we discovered that not only did we have to search for doctors who had experience with trisomy 18. We also had to search for those who saw Bella not as a fatal diagnosis, but as a wanted and loved daughter and sister, as well as a beautiful gift from God.

We knew from experience that Children's Hospital of Philadelphia was such a place. Fourteen years ago, we had another baby who was diagnosed as having no hope, but CHOP's Dr. Scott Adzick gave him a shot at life. In the end, we lost our son Gabriel, but we will always be grateful to Dr. Adzick for affirming the value of his life.

When Bella was 3 months old, she needed some minor but vital surgery. Some doctors told us that a child like Bella wouldn't survive surgery or, even worse, that surgery was "not recommended" because of her genetic condition - in other words, that her life wasn't worth saving. So we again turned to the Children's Hospital and found compassion, concern, and hope in Dr. Thane Blinman. He told us he had several trisomy 18 patients who did well - and so did Bella.

Next week, we will mark Bella's second birthday. Over these two years, we have endured two close brushes with death, lots of sleepless nights, more than a month in CHOP's intensive care unit, and the constant anxiety that the next day could be our little girl's last.

And yet we have also been inspired - by her fighting spirit, and by the miracle of seeing our little flower blossom into a loving, joyful child who is at the center of our family life.

Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children?

All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.

Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child?

Happy birthday, Isabella!

Yes, I would agree....worth every single tear.

Life Just Keeps Going on In Spite of Everything

2010-10-22T09:45:00.002-04:00

I feel terrible about not keeping up with other Trisomy 18 children and their families. It's like I want to see them and their achievements, but that is all I want to see. When I read about the ups and downs and the fears, my heart breaks into a million pieces. I know the family's pain and I can feel it and it is too much for me. Don't get me wrong, I still check on the ones I have bookmarked and oh, how some of their antics and sweet smiles makes my heart feel so good.

I mentioned several months ago that Hospice asked if we (Jerry and I) would be interested in speaking at their annual gala. Of course I jumped at the chance. Initially thought it was going to be in front of 200 people. Imagine my surprise when instead it was in front of 700 people (Yea!! for Hospice. It was a great fundraising event in light of the economy). I was told I did pretty good. Didn't cry hysterically, just weeped softly. I knew that Bri was right there sitting on my shoulder as I spoke. One of the things I loved about it was they had super-size screens in all corners of the room and showed pictures (gorgeous!) of her during my speech.

Another thing I find pretty amazing is after moving to Atlanta (it's a temporary thing) I found out there is a school on the perimeter of our rental community. This public school is where the children in Cobb Cty, with special needs, attends on a daily basis. Then.....guess who moves in across the street, three doors down...the Assistant Principal of the school. To make a long story short, they are in desperate need of substitute teachers. When I went over to take a look at the school, I became overwhelmed with the feeling of Brianna being right there with me, guiding me to where I should be that I just started to cry. Orientation is next week for new subs.....and I will be in that class.

Not Sure How to Title this Post

2010-09-02T00:08:00.002-04:00

I can't believe that almost a year has passed since Brianna died. So many times I've heard how the first year is the worst...compared to what? ...I can't imagine it getting "better". This week I have tried to be "ignorant" of the date. Maybe if I don't look at the calendar I won't see "the" date that Bri died and remember everything that lead up to her death. But I DO remember. How could I ever possibly forget? I know she was struggling and I am glad that she is at peace but darn it, we miss her SO DARN MUCH. Her happy smile, she was so cute.

Last night I dreamt about her and my father (who is also deceased). In the dream my dad was busy taking photographs of everyone and Bri, well she was just there. I remember in the dream my sister (Sonya) wanting to hold Bri but I told her "no, don't you remember? she died....I want to hold her and I did, in my arms.

It's tough being strong sometimes. Tonight I met a man who is affiliated with Jerry's work. He asked me if I was Bri's mom (he already knew the answer) and immediately he started to apologize for bringing her up. I told him it was fine. Bri was REAL and i don't want for her to be forgotten. Apparently she touched his life like she touched so many others. Thank you for asking about our sweet angel girl.

To my dear friend Kathy, thank you from the bottom of my heart. You are the best friend ANYONE could possibly have.

As for Friday, September 3rd, I plan to meet Kathryn (her daughter lived 13 months with Trisomy 18) and go Atlanta Botanical Gardens, then lunch. Jerry will join me early afternoon for our time together to reflect on our blessed life with Bri. Our sweet angel baby girl.

God has been so good to us and for that we give great thanks.

Oh, how time flies.

2010-08-18T09:49:00.003-04:00

I know, it's been two months since the last posting but don't think for one moment that Bri isn't on our minds every single day. Can you believe it's almost been a year since she earned her angel wings? Crazy. It's still so new and the pain of missing her is so very strong.

The last time I posted we were headed to the Dominican Republic on a mission trip. It was a good trip and bless Bri's little soul, she showed herself to us the very first day. When we arrived at the Mission and went out into the community, there was a boy walking around with a cup in his hand. I motioned him over to see what he was carrying and can you believe it was a cup FULL of lady bugs. Here's a picture of Jerry and the boy with his cup full of lady bugs.

The summer has been hot here in Atlanta but no different than Orlando. The change has been good for both Jerry and I.

We head down to Orlando the end of this week to attend the Hospice of the Comforter gala. We will be speaking at this event (yikes!) before several hundred guests. I've cried bucket-loads while writing the speech but am very grateful for the opportunity to speak about our sweet angel Bri and the amazing services provided by Hospice of the Comforter.

Ashley has been here in Atlanta this week and we have had a really good time. Happiness does come back after such a tragedy. I remember being told that "you will never forget, but you will get through this". I can't say we are through it. We will never be through it but we are starting to live and smile again. The tears still come unexpectedly at times but that's okay.

God Bless.

Dear Brianna,

2010-06-11T08:33:00.002-04:00

You would be so very proud of us. Your dad and I are leaving in the morning for our first mission trip to the Dominican Republic. Your life here on earth has brought glory to God. We heard the message you brought with you for those short yet wonderful 28 months you were here with us. We think of you every single day, and "see" you in the beautiful nature that surrounds us. Just last week before bed I was walking Belina and there you were...the first lightning bug I saw of the season. Lighting the way, it was amazing because the lightning bug came out of the grasses, caught Belina's eye and she chased it down the street with the lightning bug bouncing off of Belina's nose. It was amazing.

I know you must be proud of your big sis too. It was quite an emotional moment to see Ashley receive her high school diploma. You taught her well too. Her plans are to start community college in the Fall. All because of you, her goal is to become a speech pathologist.

You taught us well little Bri. Big hugs and kisses to you. Forever in our hearts.

Just Being Thankful

2010-04-14T21:17:00.002-04:00

The day before Bri's birthday was the worse. We did our best to hold it all together. Our wonderful friends Rick and Susan (coincidentally, Bri was born on Rick's birthday) held a mass in Brianna's honor. It was beautiful. Thank you to you both and your children Tommy and Allison.

On the morning of Bri's birthday Jerry and I resolved to make it a Good Day, a Happy and Thankful Day and we did pretty darn good. We took some gifts to a home for atypical children in Bri's honor, had Jerry's parents over and did a balloon release with Doug, Helen and Jim and Kathy. Below is something I read aloud before the balloon release.

Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
Is she playing on the clouds with angels?
Is she laughing and running today?
If you just let me look for a moment,
To catch a glimpse of her sweet smiling face,
I promise I won't try to take her,
I know, she's in a better place.
Just one little peek into heaven,
Is all I'm asking for today.
I just want to know how she's doing,
And heaven seems so far away...

Happy 3rd Birthday in Heaven to our sweet Baby Brianna

Thank you to all of you who sent emails and facebook messages, thank you for remembering our sweet little angel Brianna.

First Birthday in Heaven

2010-04-09T13:52:00.002-04:00

Bri will be celebrating her 3rd birthday (April 12) in heaven this year. As the day approaches I don't know how it will be for us here on earth. I've had several good crying days this week, it's like I have this cloud hanging over my head and all of a sudden the sadness starts raining down on me. We will be going to mass on Sunday with friends and on Monday Jerry is going to get his tattoo of Bri's little feet on his forearm. We are also planning on taking some much-needed items to a home in Orlando that takes care of "atypical" children and follow up with a balloon release in Bri's honor.

We miss your gorgeous smiling face so very much Bri.

One Year Ago Today

2010-03-05T22:05:00.002-05:00

I found myself tonight browsing through the many pictures taken of our family since Bri's birth and came upon this one. It is one of my favorites. Our two girls. Then I noticed that I had taken this picture one year ago today. Where has the time gone? Bri died six months ago. Seems like yesterday. If I could only hold her one more time, feel the softness of her skin and smell her sweet baby breath....if only....

Another Dream...So Far the Best

2010-01-28T20:55:00.002-05:00

Last night I had a dream...it has been on my mind all day....this is how it went:

I walk down a hallway and come to a bedroom, open the door and Brianna is lying there in the middle of the bed. Jerry is next to the bed, working....on the computer....I say to myself....what? Brianna died.....but there she is.....dreams no matter how unrealistic yet in the dream so real.....so anyway...there she is....lying on the bed.....I enter the room and think (sounds so morbid) but I think.....she is going to be so cold (rememember, she died)....I approach Brianna and she starts smiling and moving....OMG.....it's her....it's Bri....WOW.....I touch her....and she is NOT cold.....(but she died?!!!).....she is simply our sweet Bri....all smiles, all warmth....all love.....what??? is she talking now?.....she is saying da da da da (yes, she said that when she was here on earth) and then she started say Gi Gi Gi Gi.... my mother.....her grandmother....no, she didn't say that when she was here on earth.....I picked her up, held her oh so close.....in my dream I could smell her....YES!!! I could smell her.....I could honestly feel her.....I was in heaven.....because even in my dream I knew she had died....then the dream simply dissolved......I woke up.....it was 3:30 am..... took a while to get back to sleep....I kept thinking oh, how wonderful.....I not only saw her again, but I held her and could smell her scent......God is so Good......

One More Thing

2010-01-24T20:59:00.006-05:00

Jerry and I met with a very special little boy and his family....Caleb, he is 10 months old and adorable (full trisomy 18). I was so amazed at how these children look so much alike. Aren't they the cutest things ever?!!!!

Caleb....

Brianna....

I actually posted twice tonight...woooo hooo. Be sure to read the blog below too....very important stuff.

Something I Have Been Wanting to Write About

2010-01-24T20:48:00.003-05:00

Sadly, we have experienced that the father's of our very special children are so very often ignored. Unintentionally, I'm sure but none-the-less, ignored. I can't tell you the countless times I have been approached with hugs and condolences, offers of prayers, etc....and Jerry would be right there with me yet never acknowledged. I KNOW when this has happened that it is not intentional, I think it is more like the man is supposed to be the "rock", the "tough" one...but let me tell you, when your child is terminally ill, the father is just as sad as the mother. He needs just as many prayers, hugs, condolences, etc. as the mother. Maybe even more because while the mother is at home taking care of the child, the father is out, away from the family, working....please, I ask each of you who read this update to thank the father of the children that you are following on other sites....

While researching grief, I came across the following....sure hit home with me.

Fathers - The Forgotten Grievers

The death of a child is probably the most traumatic and devastating experience a couple can face. Although both mothers and fathers grieve deeply when such a tragedy occurs, they grieve differently, and it is most important that each partner give the other permission to grieve as he/she needs. This may be the greatest gift each can give the other.

Parental grief is strongly influenced by the nature of the bond between child and parent. Bereavement specialists actually speak of "incongruent grieving" patterns in mothers and fathers and of differences in the timing and intensity of the parental bond for mothers and fathers.

For the mother, the bond is usually more immediate and demonstrable, more intense at the beginning of life, more emotionally and physically intimate. The mother's bond with the baby is usually tightly forged from the moment of conception and continues through the pregnancy, the birth, and the nursing process. The maternal bond involves the present and the baby's immediate needs, while the father's bond with the baby more often concerns the future and dreams and expectations for the child. Today, however, many fathers are forging earlier and more intense prenatal bonds with their babies. Fathers also are often present in the delivery room for the birth. Some fathers become direct caregivers of the newborn, developing early and close bonds with their infants. Yet, still in many cases, "the father's emotional investment in parenting tends to occur later and less intensely than the mother's. This has implications for the way parents grieve" (Cordell and Thomas 1990, 75).

When is it my turn to cry? I'm not sure society or my upbringing will allow me a time to really cry, unafraid of the reaction and repercussion that might follow. I must be strong, I must support my wife because I am a man. I must be the cornerstone of our family because society says so, my family says so, and, until I can reverse my learned nature, I say so. - A FATHER, IN DEFRAIN ET AL. 1991, 112
In spite of the trend towards earlier bonding between fathers and babies, the influence of cultural expectations about men and grief persists and is powerful. Typically, the societal view of parental loss is not the same for the father as the mother. Most of the literature on parental bereavement still tends to focus on the mother's grief. Often, men are not acknowledged as experiencing grief; or more importantly, men are not taught that it's necessary to grieve and are discouraged from demonstrating signs of grief openly. Bereaved fathers frequently feel that they are the forgotten mourners and are often referred to as "second class grievers" (Horchler and Morris 1994, 72).

Fathers are expected to be strong for their partners, to be the "rock" in the family. All too often fathers are considered to be the ones who should attend to the practical but not the emotional aspects surrounding the death; they are expected to be the ones who should not let emotions show or tears fall outwardly, the ones who will not and should not fall apart. Men are often asked how their wives are doing, but not asked how they are doing.

Such expectations place an unmanageable burden on men and deprive them of their rightful and urgent need to grieve. This need will surface eventually if it is not expressed. It is not unusual for grieving fathers to feel overwhelmed, ignored, isolated, and abandoned as they try to continue to be caregivers and breadwinners for their families while their hearts are breaking. "Fathers' feelings [often] stay hidden under layers of responsibility and grim determination" (Staudacher 1991, 124). Bereaved fathers often say that such strong emotions are very difficult to contain after their child's death. Fathers often fear that they will erupt like volcanoes if they allow themselves to release these feelings and so, too often, fathers try to bury their pain with the child who died.

It is most important that a father's grief be verbalized and understood by his partner, other family members, professionals, coworkers, friends, and by anyone who will listen. Fathers need to try to free themselves of stereotypes and societal expectations about men and grief; they must be able to tell others that their grief is all they have from their child's brief life. Fathers repeatedly say that for their own peace of mind, they (and those who care about them) need to move away from this mind set and allow them to grieve as they are entitled.

In too many instances, fathers' responses to infant loss tend to coincide with how they believe they should act as men, rather than how they need to act to confront and resolve [their own] grief. - CORDELL AND THOMAS 1990, 7

I saw Bri

2010-01-15T08:03:00.002-05:00

I saw Bri....in a dream early this morning. She was in her carseat....sleeping peacefully.....then started to stir and wake up....there were people around....smiling and looking at her......I touched her nose in a playful gesture and she smiled that gorgeous smile.....my heart is happy today....thank you Bri. You knew I needed that.

Memorial Cards

2010-01-11T18:44:00.003-05:00

Below are the cards we had made for Brianna's memorial service. The first is the top and the second is the reverse side. The third picture is the memorial program. The cards have turned into a type of "calling card" for Brianna. We hand them out every chance we get.

Good Morning Sweet Angel

2010-01-03T09:48:00.006-05:00

Today marks 4 months since you have been gone. It has been a life-changing event that has just about torn our family apart. I ask for prayers for us (Brenda, Jerry and Ashley) that God will lay his healing hand on our family and bring us close again.

Last week we received a card in the mail, it is so amazing that I want to share it with everyone. Here is the outside of the card...

and the hand-written note inside:

"Your sweet little Brianna wasn't here for Christmas, but when I saw this picture there was an immediate reaction - my goodness, there's Brianna scampering around in heaven."

Thank you Joe and Cheryl. What a wonderful card.

100 Days

2009-12-15T13:28:00.007-05:00

It seems like an eternity since Bri has been gone. Long days and longer nights. We did put up a Christmas tree although it is sparsely decorated. Just this past weekend Jerry put the lighted cross out by the front door. We thought we would string up the lights on the house but haven't had it in us yet. Maybe we will, maybe we won't.

We got through Thanksgiving. Jerry had a business trip to Denver and thought it would be good for me to go with, so I did. We stayed out there for a week. What a beautiful part of the country. Went snow skiing at Copper Mountain and Monarch Mountain, even made a snow angel in memory of Bri. Jerry got it on camera but I haven't uploaded it yet. It is really sweet.

I spent a week at my mother's house doing holiday stuff with my mother and sisters. It was so hard. Just bittersweet. Initially we were going to go visit for Christmas but decided we would rather stay here in Orlando.

On December 4th we attended a breakfast for Hospice of the Comforter (in Altamonte Springs). Bri's story was one of 4 featured on their video. What a beautiful tribute to both Bri and the services provided by Hospice. I've tried uploading it too but....brain cells can't figure it out.

I've had a trying afternoon. Have been making calls regarding unpaid medical bills. Wondered why we were getting them (after having no problem reaching our deductible this year) and found out that somehow they were requesting payment from an insurance company from five years ago. Apparently insurance info stays out there in cyberspace and was picked up by some of these companies. What makes it so trying is I have to call, wait, explain and then most times they will ask if the person is still insured. That's when I drop the bomb. Most times they can't get off of the phone fast enough.

We sure do miss our sweet little baby Bri but feel comforted in knowing that she is in heaven singing with the angels.

What the heck, here's some pictures from 2008, as I have said many times before, isn't she the cutest thing ever?

Merry Christmas

Ashley's Video

2009-11-05T21:34:00.002-05:00

This is a video/photos that Ashley put together when she got her first "ink". As to be expected, it makes me smile because of how proud I am of Ashley yet I cry because of how much I miss Brianna. I just continue to repeat over and over, God is good, God is good...but the one thing I will tell you though is when I first see him, my first question will be, Why?.....Why?

Sweet

2009-11-02T08:46:00.002-05:00

Just a sweet iphone video that should make you smile and perhaps cry. The red light is the O2 monitor on Bri's toe.

Here I Am

2009-10-26T12:02:00.002-04:00

I don't know how else to title this chapter except to say Here I Am, or actually Here We Are....moving on with life. I can't say we're moving on without Bri because although she is not here physically, she IS here, in our hearts and thoughts. The thing about grief is dang it, it can sneak up on you right out of the blue. The first days after Bri died, the grief was different. The pain she was in the few days before death helped us to realize that it truly was a blessing that she had been received upon the Lord but as the days and weeks progress, it's harder to remember the pain she as in because our pain of missing her sweet little smiling face is so overwhelming. It's harder to go into her bedroom without sobbing. I know this will pass and that it will eventually get easier and I don't want to rush it because I need to feel this. I just need to feel it.

On another note, we have been asked to share our story with Hospice of the Comforter here in Altamonte Springs and today is the day. A local television crew will be filming us in a couple of hours. I can feel the tears already. The story will "debut" Dec. 4th at a Hospice fundraiser. We will keep you posted.

Oh Sweet, Sweet Brianna

2009-10-12T17:15:00.003-04:00

I can be having a pretty decent day and click on Bri's website and the tears begin to stream down my face when I see that gorgeous smile on sweet Bri. Thank God that she was so very happy during her short lifetime.

Life is going on at a much different pace now. I am actually getting through some of the "stacks" of "stuff" that piled up the last couple of years. One would think I would have a lot of time on my hands but actually I don't. Well, I probably could but I prefer to keep busy, it keeps the sadness from creeping in on me.

Jerry is back to work full time, traveling a lot and not liking it at all. I don't like it either but right now, that is where we are at job wise. Praying every day for something to happen / change up so he can be at home more.

Ashley is back in school and working part time. I don't get to see her very much which makes me sad but I have to get used to the fact that she is 17, almost 18 and at that age, who wants to hang out with their mother?!!!

We've started a flower garden between our house and Kathy's house and it has been officially named "Brianna's Garden". Kathy and Jim bought a beautiful angel statue and cross for the garden. We both planted various flowering plants that attract butterflies. One of the hospice volunteers, Ann P., brought over and planted a beautiful pink hibiscus. She officially dubbed the color "Brianna Pink". Here in the near future I will take some photos and post them. The garden is really beautiful and the butterflies have been feeding daily.

Please note the Brianna Gives Hope Foundation info on the left side of the site. Things are happening....we are very excited.

Brenda

I feel you baby Bri, I feel you...

2009-09-30T09:43:00.002-04:00

This morning I slept in. The house was cooler and the bed so very comfortable. Once I was out of bed I realized why, we had a "cold" front come in. Here in Central Florida, a "cold" front means it is NOT 95 to 100 degrees outside along with 100% humidity. Anyway, the temperature in the house was 76, yeah I know, LOL. Continuing on with my morning, I opened the blinds, made some coffee, opened up the back porch for Belina and OMG, the weather outside was glorious, absolutely glorious. As quickly as I could I put my shoes on and took Belina out for a walk and then the tears just starting streaming down my face...Bri was everywhere, I could feel her presence, I felt as though her arms were wrapped so tightly around me and even though I am back inside typing this, she is here with me. I feel so blessed to be able to recognize the feel of her love, the feel of Christ's love. Thank you baby Bri for this very special time together this morning. I love you so very much.

What is there to say

2009-09-28T23:30:00.003-04:00

I know...I have been away for some time now but in all reality, what is there for me to say? really, what is left to say? Each and every day I wake up and think ohhhhhh another day. I can't believe how fast the time is going by. Bri died 3 1/2 weeks ago yet it seems like yesterday. Upon her passing I felt that I had no regrets that I (we) had left no stone unturned but as the time continues on it is easy to find things that I regret, just holding her a little more, singing to her a little more, hugging and smelling her a little more....we just miss her presence in our lives so very much. My heart aches like you couldn't believe. Jerry is back at work full time and Ashley is back at school full time and I am working at the house sorting out "stacks" of "stuff" that have been stacked up for the last 2 1/2 years. LOTS of filing and organizing to do. I hope in the near future to find at least a part-time job. Guess I will see what God has in store for me next.

We so appreciate the many donations made to the Brianna Gives Hope Foundation and Jerry and I are working with the folks at our church, First Presbyterian Church of Orlando's Heart of the City Foundation, to make each and every dollar donated to Brianna Gives Hope counts. We feel honored to have FPCO's Heart of the City Foundation work with us to make a change in other people's lives. Jerry, Ashley and I feel so incredibly proud to be able to honor Brianna's life in such a way to help others. God has been and continues to be so good to us. We will be sure to keep you posted on information regarding Brianna's Foundation.

Good night sweet baby Bri.....we miss you so very much.

Shining Down

2009-09-22T18:02:00.002-04:00

Jerry and I are in Atlanta....talk about rain. Goodness, it's been raining so much that houses are flooded, roads are closed, schools are closed....forecast called for rain today too but little Brianna and her T-18 friend, Christina took care of business today and had the sun shining for us. Christina is the daughter of Mills and Kathryn, whom now reside here in Atlanta. They are the first couple we met with a child with T-18. Christina lived here on earth for 13 months but without even having to say it, she still resides here on earth in her mother, father, grandparents, and many others including us. It's comforting to know that today both Brianna and Christina were smiling down upon us with BIG rays of sunshine. Thank you sweet angel pies.

Kathryn was gracious enough to spend the day with me. We talked, cried, talked, laughed, window-shopped. I thoroughly enjoyed the day. A big thank you Kathryn for your time.

Reading the blog

2009-09-20T22:51:00.003-04:00

I just opened Bri's blog again, or actually my blog about Bri and read my last post....oh, it sounded so sad. Part of me feels like I should apologize but then another part knows that I shouldn't because that is where I was at that moment. That is how grief is, up one moment, down the next.

I'm feeling pretty good right now, yesterday I went to a conference with a wonderful girlfriend, the presenters were Beth Moore, Priscilla somebody and Kay somebody (I love it when I really know what I am talking about...lol) and what light they showered on me. More on that later but let me tell you, if you want a GREAT bible study, go online and look up Beth Moore....she is something else.

Today Jerry and I went kayaking in the Winter Park chain of lakes. Surprisingly, we missed church to do this. I learned from Beth Moore that there are times when you have to really look and see what is important "this day" and do it....today it was important for Jerry and I to get out and be together. We are glad we took the time to do this, it was a great day, there was no doubt that we were blessed for doing so.

In the morning I am flying to Atlanta with Jerry. He is returning to work. What a difficult time and I want to be there to support him.

Ashley spent the weekend at the beach and took some great photos of Bri's best friend, Susie....they are so sweet. Check them out on my facebook account....brenda langston botts.

Special thanks to Jesus Christ, he is such an awesome God.

Good night all. Especially to sweet baby Bri.

oh where to start

2009-09-18T21:55:00.003-04:00

I open up Bri's blogspot and can't stop crying. The tears are pouring like rain. We miss her so much. Her absolutely beautiful happy face radiating out from the blogspot. It has been 15 days since she died. Died, I have to say that word. I can't continue to say the unreal words like "passed or gone away". Brianna has died, end of sentence. Yesterday I was at the doctor with Jerry, it appears that he has thrown his back out, and luck would have it (although I wouldn't really call it luck) that I would look at my watch right at 2:55 pm, the time she died two weeks ago. Tears, tears and more tears.

Jerry had planned on going back to work this past Wednesday. I was going to go with him to Atlanta, with a stop in Savannah on the way, just to be there together but that didn't happen. We couldn't do it. Couldn't leave the house. Every day we kept saying "ok today we will get out and do something". never happened until today. We finally got out and went up to the Wekiva River and sat on the riverbank in adirondack chairs and just enjoyed the outdoors. I could feel Bri's presence in the beautiful outdoors. She was there with us for sure. Big angel hugs and kisses to you Bri, mama, daddy and sissy miss you so very much.

It's All About Love

2009-09-15T15:18:00.003-04:00

It's been a very difficult week. I have so much on my mind that I want to put into words...the time will come. Here's the video Jerry and I put together for Bri's memorial service. Big thanks to Tom Mills for his help. Couldn't have done it without him.

Seven Days Ago

2009-09-09T22:53:00.003-04:00

Seven days ago at this time we were begging God to take Brianna. She was in so much pain. But he was gracious enough to calm her and give us another 15 hours with our little angel. 15 hours that she was at peace and in no pain.

I'm here tonight with some rambling thoughts. Today Jerry and I designed Bri's Memorial card to be handed out at the service....no worries to those who can't be there, I can mail some out. Then we went over to First Pres. and figured out the schedule for Bri's memorial service. No tears, almost, but just teary eyes. "Bri is in a better place, Bri is in a better place".....keep saying it silently to myself.....and maybe just maybe I can hold myself together until I get home or at least in the car. Lasted until I got home and then cried myself silly. I know this is part of the grieving process but dang it.

I have to say I am pleased with myself in in the sense that I can look at, touch and talk to babies and small children without tears. Actually, I feel no sadness at all when that happens. I find myself feeling very happy for the parents for their having those dear children.

I am proud of Ashley. She almost wasn't ready to come into our house yet (afraid of all the Brianna paraphenelia laying around) although I did assure her that we had straightened up quite a bit and well, she then decided that yes, it was time. And it was all good. We had a nice afternoon, me, Jerry and Ashley. Went to a casual dinner, stopped by the mall and took her home early since she had quite a bit of school work that needed to be completed. And, in the middle of it all, received a call from the funeral home stating that Brianna's ashes were ready to be picked up. Here I go again, don't think about it, don't think about it, "i'm sorry Ashley, what did you say again???

One more thing I want to share. This morning when I awoke, Jerry was not in bed. He was on the couch. Said that he woke up around 2:00 am and simply couldn't go back to sleep. He was thinking about Brianna and how I felt her presence when the lady bug had landed on me days earlier. He said he was wondering if he would ever get a sign from her, and would he feel it or see it?.....Picked up his iPhone and started reading chapters of the bible, just searching for answers to whatever, got tired, placed his phone under his pillow and started to doze....then his phone beeped signaling that he had received an email....so, when he picked up his phone and looked, it was from me, and it was a picture of Brianna......yes, amazing, huh. Several days earlier I sent him that picture but he never received it until 2:33 am. Just when he needed it, sweet Bri said hello. God is so good. I think I will close on that warm and fuzzy story. Good night all.

Five Days

2009-09-08T16:46:00.005-04:00

It's been five days since Bri left this earth. Five days of serious ups and downs, crying, smiling, remembering and being grateful. We miss her so darn much and our hearts are aching. Ashley had to go back to school today, God bless her because it must have been very hard. We love you so much and can't imagine being a teenager experiencing this kind of pain.

As I said in my last post, some friends gave us tickets to Cirque du Soleil for last Saturday night. As it was getting time to leave for the show, we both agreed that we would rather stay home but in our hearts we knew we needed to get out. So we went. The show was awesome, there are no words to describe it, it's simply an amazing one hour and 40 minutes of mouth gaping entertainment. But still, we really weren't there. We were watching yet completely numb at the same time. Cried all the way home.

Brianna said hello to me first thing Sunday morning when I was out with our crazy puppy dog, Belina, by showing up disguised as a lady bug....landed right on my sleeve. We miss her so very much. Going to church on Sunday was a great feeling. Our church family has been and continues to be very supportive. Thank you to our family, friends and church family for being there for us Sunday. It made all the difference in the world.

Monday morning we decided to get up and get out again....maybe go kayaking for a couple of hours instead of sitting home being surrounded by so many memories. We went and it was a nice day.

Lots of things to be done this week, the kind of things you don't want to do so it is easy to procrastinate, but we're getting through it, little by little.

Mama Kathy stopped by a little while ago and we started looking at pictures and videos that I recently downloaded onto my computer. Can't wait to edit and post some of them. The memories had us smiling, not crying...that's a good thing.

Memorial Service planned for Saturday, Sept. 12 at 3:00 pm at First Presbyterian Church, Downtown Orlando
In lieu of flowers, donations can be made to "Heart of the City / Brianna Gives Hope", 106 East Church Street, Orlando, FL 32801.

To see the notice in the paper, visit Orlando Sentinel.com, obituaries for Sunday, Sept. 6th.

Ashley and Brianna at 8 days old

Brenda and Brianna at 2 months old

Daddy-O and Brianna at 3 months old

What a Draining Day

2009-09-05T18:22:00.004-04:00

Jerry and I are wiped out. It's been a very emotional day. We went to see Bri....she was so pretty. Resting peacefully wrapped in her grandmothers quilt and her bear-skin plush rug on top keeping her snuggly. Pretty Florida dress and matching bow. My sister Judy suggested getting Bri's hand and footprints on paper as a keepsake. Of course I took it a little further...and had Bri's footprint stamped on my forearm....Jerry followed suit. No, it's not permanent but it will stay for several days if we are careful.
Came home and wrote Bri's obituary, whew, it will be published tomorrow in both the Orlando Sentinel and the Northwest Daily News. Both newspapers can be read on-line.

Tonight we are going out to Cirque du Soleil. Some friends gave us the tickets. Jerry and I could just stay here at the house on the couch taking turns sighing......stress.....but we're not. We are leaving shortly to get out and get some fresh air.

Thank you Connie and Chuck for the Kahlua pound cake and red wine.....both were delicious. Church tomorrow. We are looking forward to meeting up with our friends and giving glory to God for our family. You are more than welcome to join us. 11:00 am Genesis Service, First Presbyterian Church Downtown Orlando, front row, baby!

Memorial Date

2009-09-04T10:33:00.004-04:00

Brianna's Memorial is scheduled for Saturday, September 12, 2009 at 3:00 p.m.
First Presbyterian Church Downtown Orlando, in the sanctuary
106 East Church Street
Orlando, FL

In lieu of flowers we request donations be made to our newly formed non-profit organization: Brianna Gives Hope
We will be posting information on how and where to donate by Tuesday. The Brianna Gives Hope foundation has been created to help other families in similar situations with respite care, provide happy, colorful hospital gowns for sick children, equipment, and that is just the beginning. Our goal is to give back, Brianna gave us so much and we want to pass on the love.

I'm sure Brianna would be pleased to look down and see everyone wearing bright colors at her Memorial for this will be a day to celebrate her life, not mourn her leaving.

We are also checking into hotel information for out-of-town visitors. Should have that posted in the next day or two as well.

One more thing, Jerry and I will be going to church this Sunday and invite you to come with us. God knows we need all the support we can muster at this point. We will be attending the 11:00 am Genesis Service at First Pres. (address above). Meet us under the angel wing (just ask when you get there) or in the Genesis service, we plan on sitting in the front.

Angel Wings

2009-09-03T16:04:00.003-04:00

Brianna has earned her angel wings. Today at 2:55. She was not alone. I was holding our sweet baby Bri in my arms, while Jerry, Ashley and Mama Kathy were right there huddled with me. We were all loving on her.

Please understand if we do not return phone calls, texts or emails.

Memorial arrangements to be posted.

Our Sweet Angel Pie

2009-09-03T12:54:00.004-04:00

Oh how life can change in the blink of an eye. I took this picture late yesterday afternoon.

Earlier today, resting comfortably at the Hospice House.

Please continue to pray for comfort for sweet baby Bri please.

Still With Us

2009-09-03T08:51:00.002-04:00

Bri is still with us. We are all wiped out. Last night was so bad that we were praying for Jesus to take her in his arms. There was no comforting her, even with medication. But once again our God showed mercy and opened up a room at the Hospice House (less than 5 miles down the road) and we were welcomed into the facility after midnight. This is a hotel-type facility complete with nurses and doctors who are here to offer comfort care not only to Brianna but to us as well. Everyone has been so kind. Bri is sleeping right now, so is Ashley. Jerry ran home to take care of our sweet puppy dog Belina and I am sitting in Bri's bed at the foot just watching her sleep peacefully.

It's a Horrible Night

2009-09-02T21:42:00.001-04:00

Pray, pray, pray for comfort for Brianna. The time is near, very near.

I guess from this posting you can tell the doctor appt. didn't go very well. Her heart has deteriorated rapidly. He said she has less than 14 days to live, that's two weeks, less than 336 hours, less than 20,160 minutes.....and that was earlier today. Earlier this evening her heart started racing up and down again, meds didn't help, we had to call the hospice nurse, she is here now. It's not good. We are so very sad.

ZZZZs are Calling

2009-09-01T19:55:00.002-04:00

We are tired, all of us. That is why I am posting early in hopes that all of us will be getting some sleep soon. My mother has been here for a week and she is leaving tomorrow. We will miss her as she has been a big help. Brianna was up this morning around 5:30 then took a nap around 8:30 and at 10:45 I couldn't help but wake her up. After that she was quite lethargic and whiny. Her heart rate would go from 80 to 135, drop back down to 92 then up to 148 all in a matter of seconds. I learned later this afternoon that when the heart rate is going up and down like that it is very exhausting to the person it is happening to. Around 3:30 her heart rhythm got back on track and she was her happy-go-lucky self.

Thank you to Kristen and Madison; Darlene and Max for visiting and bringing lunch. Unfortunately Brianna wasn't in the mood to visit. Another thank you to Cassie for coming over and giving us a break this afternoon.

Tomorrow morning we have an appt. with Brianna's pulmonary doctor. It will be interesting to see what he has to say. Brianna has been on oxygen for a week now and appeared to have stabilized somewhat until today. Of course I will post later tomorrow.

Thank you to all the emails, facebook entries and blogsite entries. I wish I could write each one of you back but the time is just not there. I so appreciate the heart-warming thoughts and prayers.

Brenda

Staying in Bed Sounded Like the Best Idea

2009-08-31T22:40:00.003-04:00

When I first opened my eyes this morning, all I wanted to do was cover my head and stay put all day long. We had an appt. with a man from the funeral home. So, get up, get a shower, don't think about it, drink coffee, don't think about it, check on Bri, don't think about it...walk the dog, don't think about it.....he pulls into the yard and oh, there's no words. Thank goodness he wasn't driving a vehicle marked accordingly. I asked him when I called last Friday if the vehicle he would be coming over in would have any type of business identification on it and he said no. Thank God for little things.

Mr. Dan was such a nice, respectful christian gentleman. He stated that he knew how we felt because he and his wife also had a child pass away at an early age. I was ok until I had to fill out a form with Brianna's information. That's when the tears started to flow....Right now we are planning on a Memorial Service and not a funeral service. There is absolutely no way that neither Jerry or I could stand to see a child-size casket. I don't think I could even walk inside the church without losing my mind. Anyway, we made it though the preliminaries.

The stress we are under makes simple ordinary things HUGE. I can't seem to stop crying, I don't want to be in the house waiting for the time but nor do I want to be away from the house and lose precious time. I say mean things to Jerry, I find myself isolating myself, I can't quite explain it except to say that it hurts so bad. I want this chapter in my life to be over yet I don't want it to be over. And for all of you T-18 moms out there whose children are alive, if you are like I was before this pulmonary hypertension death sentence, I hung on every word other T-18 mothers said hoping and praying that what they were going through would not be what I would be going through one day. I always wondered exactly what would take Brianna's life, a cold turned to pneumonia, cancer, just what would it be. All I have to say now is that it could be worse. As far as we know Brianna is not in any pain. That is our continued prayer at this time. No pain for sweet baby Bri.

A Day to Give Thanks

2009-08-30T20:06:00.002-04:00

A day to give thanks because we are enjoying yet another day with our little miracle baby girl, our older daughter Ashley and Grandmother. Bri's first venture out in a week to church this morning and we enjoyed every minute of it. Oh, to look at Brianna is so deceiving. She presents so healthy and happy yet it is her heart and lungs that are giving out. Thank you a hundred times over to our spiritual family at FPCO. Your support has been life-saving, really.

Brenda

Flat..

2009-08-29T23:10:00.007-04:00

That's how I feel. Running on auto-pilot. Did I tell you that Brianna can't have baths anymore? Nor can she go swimming in any body of water. Well, actually she can if we want to end her life sooner than later. Sounds crazy but the one common denominator in all three major "blue" spells was that they happened within 10 minutes after a bath. When Jerry said after the second one, no more baths, I was like what? That's ridiculous but actually it's not. When Brianna is placed in warm water, it causes her body to adjust to the temperature which changes her blood flow, which causes the heart to send un-oxygenated blood throughout her body, so she is still breathing, but there is no oxygen. Which explains why during the last blue spell, she was breathing from the oxygen tank yet she stayed blue for at least 10 minutes. So now it is wash-cloth baths all the way.

We have enjoyed the many visitors. Here's some pics I snapped. Didn't get one of everyone. Oh well....

Oh So Tired

2009-08-28T23:16:00.002-04:00

It's heartbreaking to see how tired Brianna is now. She has been taking cat naps periodically through the day yet when she is awake, she is her usual happy, rolling, sitting up self. Her little body is getting so tired.

We almost got through a night without alarms until 3:04 am....and then today I was on the phone with a long distance dear friend, Martha Bravo (the photograph who has taken the most amazing pics of our family) when Brianna's heart rate spiked to 256. In total shock I hung up on Martha and concentrated on Brianna (with Jerry). It came right down but boy did I feel like I needed a stiff drink after that one!!!

We had a very good visit with our friends Steve, Ibis, Jim, Karen, Vance and Theresa this evening and they brought over a wonderful "comfort food" dinner. Good friends, good food and good times. Thanks to you all!

It's been a very difficult week. Today Jerry had Bri's pediatrician sign the DNR (Do Not Resusitate) form. Learned something new about this. If by chance we were out and Brianna had an episode and an innocent bystander called 911, without us having the original DNR form on us, the EMS would HAVE to do whatever is necessary to keep Brianna alive. We would have no say whatsoever if we did not have the original with us.

I also called the funeral home to arrange for a meeting next week. This stuff is so unbelieveably hard, I guess by blogging about it, it helps me....sounds crazy I know. It is crazy and so very wrong.

All is Well...at the moment.

2009-08-27T23:05:00.002-04:00

We all had a good night last night. Brianna's pulse oximeter didn't alarm not one time...yippee!!! We actually heard her playing with the sweet seahorse light up toy that her friend Maddie brought over to her earlier in the evening. It's the kind of thing that wakes you up from sleeping but ever so lightly and makes you smile with delight because your sweet baby is enjoying life. Thank you Kristen and Maddie for making that possible : ) Hubby is in bed, Grandmother is in Bri's room watching over her and I am waiting for all to go to sleep so I can go to sleep. Thank you to everyone for the many thoughts, prayers and food!!!! I have never been in this position and it feels kinda ackward but at the same time, feels so good not to have to think about meal planning, shopping and cooking. I have new pics but too tired to upload them now. Tomorrow I will attempt that. God has been so good to us. As for a prayer request, pray for no pain for sweet Brianna.

Never Say Never

2009-08-26T22:49:00.005-04:00

There are many times in ones life that things are put before them and they say NEVER! and someone usually pipes up, never say never. Well, not too long after Brianna was born, Ashley put in to have a tattoo (her first and hopefully her last)) of something to pay tribute to Brianna. We've talked about it many times but kept putting it off. Well, now that Brianna is not doing very well, Ashley asked again....and after deliberation we said yes, ONLY after reviewing the artwork prior to the tattoo. (We have also kept in the back of our minds that she is 17 1/2 and if she got a tattoo now, we would have some say in it, if we waited 6 more months....yikes. Who knows what she might do. So....today was the day and I have to say that I really like it. Later this evening she shared with me that now Brianna will be with her always, somehow the tattoo makes Ashley feel that Brianna is even closer to her heart. Sweet.

Curious?......

Brianna also had a special visitor this evening, her friend Maddie. Isn't she the cutest?!!! She kept reaching over to hug and kiss Brianna.

Quick Update

2009-08-26T11:45:00.002-04:00

Brianna is doing good. The oxygen has made a big difference; giving her comfort. She episodes continue from one extreme to another. Sometimes they are the super-high heart rate; blue spells and then other times, the extreme low heart rate. This morning at 3 am it was the extremely low heart rate. We have learned that it at those times she is experiencing a Bundle Branch Block (google it, easier to understand). Several hours later she is back to "normal".

Thank you again to everyone who is sending emails; texts; notes on Facebook and comments on this site. Although I don't respond to each one of you, your thoughts, prayers and kind words do not go unnoticed. Thank you from both Jerry and I.

My momma is here in town now. My sister Judy brought her. A super big thank you to her. Everyone knows in times of sadness and distress, it's always good to have your mom around.

More later.

Oh, I posted another blog below, thank you May.

Brenda

Plagerizing again...LOL

2009-08-24T23:55:00.004-04:00

Once again Vera's mum, May, had something on Vera's site that I just HAD to copy and paste. Hope you don't mind May. God's blessings to your family.

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

The Day is Ending Better Than it Started

2009-08-24T22:32:00.011-04:00

At 3:15 am I woke with a start, looked at the baby monitor and something didn't feel right so I went to Bri's room. She was restless, rolling back and forth, moaning a little bit. When I picked her up, she was warm, clammy, sweaty. Her oxygen level was good but I noticed that her heart rate was climbing and climbing and climbing and although she was just laying in her bed, she was breathing like she had just finished running a race. The monitor alarms when her heart rate reaches 160, well, it alarmed, I pressed the silent button (works for 60 seconds), alarmed again, silenced it again, alarm, well, that is how it went for quite some time. By the second alarm Jerry had joined me in her room. We were giving her oxygen but that did nothing to slow down the heart rate. There we are sitting in the dark, on the floor, holding Brianna, praying, praying, praying that if it is her time, take her quickly and without pain. After an hour of the three of us on the floor, two of us obsessed with the numbers on the machine, the third being just trying to slow down from the "race", we negotiated. I laid down for an hour while Jerry kept vigil, then Jerry slept while I kept vigil. After several hours of the high heart rate (into the 170's) Brianna rested.

We have kept the oxygen on her continuously since then. There were several times today when it appeared that she was starting to have an episode but then it subsided.

Thank you to the many friends who came by to visit with us today. We feel blessed that God has given us this time to prepare (yeah, right, huh) and for our many friends and family to visit with Brianna while she is still here on this earth. She continues to be a happy, smiley little girl. God has been so good.

On another note, wonderful news. We have often talked about the idea of starting a non-profit organization to help families like ours, receive respite care. Sadly, there are too many families who don't qualify for any government/organization programs to help families cope with situations like ours. We plan to change that. Our organization is: Brianna Gives Hope. We will be posting more information as it developes. Many thanks to those who helped us make it a reality. We are looking forward to our first Golf Tournament and Motorcycle Poker Run.

Anyway, Brianna is in bed, I am watching her on the monitor and listening to her babble (while I also listen to my husband snore...lol. God bless that man. My heart breaks for him. His only natural daughter, and he has to watch her die. Breaks my heart.

The oxygen has given Brianna new strength. For how long we don't know but we will take whatever we can get.

Here's Brianna on her swing last week. Oh how she loves the wind in her face.

Goodnight.

Comfort Care

2009-08-22T22:06:00.003-04:00

Brianna and Grandpa Botts several weeks ago

Looking all pretty in my mom-designer hospital gown

Momma Kathy loves me....and I love her

We are home from the hospital. Met with the cardiologist today. Brianna's pulmonary hypertension is so severe that there is nothing more that can be done in her particular case. We have chosen comfort care at this time. Brianna will be on oxygen to help alleviate the tightness in her chest. Of course we don't know what God's plan is at this time but we do know that God has a plan for every single one of us and the amount of time we will be here on this earth. Faith. We must continue to have faith. As I have said before, we continue to be grateful to God for allowing us to be the caretakers of Brianna for this time. I think I can rightly boast that God must be proud of us for how well we have taken care of her because he has continued to allow her to bless our lives.

Brenda, Jerry and Ashley

Tremendous Sadness

2009-08-22T14:06:00.002-04:00

It is with tremendous sadness that I let everyone know that Brianna is in the hospital again. Yesterday she turned blue again. Just started having problems getting enough oxygen, I immediately hooked her up to her pulse oximeter and her blood oxygen levels were at 61 (should be 100), got the oxygen going and even with that, her levels wouldn't increase. She was moaning and trying to breath, turning pale and blue. Jerry was home with me at the time, we continued with the oxygen hoping the episode would pass but after 8 to 10 minutes we called 911. When the paramedics arrived, they took one look at Bri, saw the blood oxygen level, and the oxygen and her little blue face and bolted us out the door into the ambulance on to the hospital. They were preparing to intubate her in the ambulance when her oxygen dropped again but thank you God, her levels came up.

We were in the ER for a while and then she was admitted. Today we have found out that her pulmonary hypertension is extremely severe. I have noticed in the last month that her heart has become larger due to having to work extra hard to push the oxygen into her lungs. The first indication of a problem was the bundle branch block that happened last week. We know there are meds for hypertension but the problem is she needs a cardiac catherization before the proper dosage of meds can be administered or they could be fatal. Last week her cardiologist told us he could not do the cathe. We are now meeting with a new cardiologist but the fear is that the procedure would be very high risk and she would not survive it, that is even if we could find a cardiologist who would agree to do it. Even if so and she survived it, how much time would the meds give her to live? Then we have to ask ourselves if we are being selfish in putting her through this? We want her here, we want her to stay with us. You can't imagine how hard this is.

We finally allowed ourselves to really look to the future, a teacher from the school would start coming to the house in the Fall, and when she turned 3 she would be going to school, we ordered her a wheelchair, I've been planning her Halloween costume. There are so many photos I still want to take, places we want to take her.

Please pray, pray, pray for just a little more time. Just 5 minutes more.....

Ahhhhh.....help is on the way.

2009-08-20T01:26:00.003-04:00

Oh, I am so looking forward to tomorrow, or should I say later today since it is 1:27 am. Why am I still awake? Because Bri is and she threw up not to long ago so I want to make sure she is asleep before I crash. Anyway, back to later today....I have TWO, yes TWO volunteers coming to watch Brianna. One is a volunteer from our church, Cassie is her name. She has pediatric nursing experience and is going back to school for her masters degree. The other volunteer is from Hospice, she is also a nurse or actually a retired nurse. Either way, I'll take both of them. It was coincidence that they both were available only on Thursday this week but heck, I didn't want to miss the opportunity. What will I do with my time? Hmmmm.......will let you know later.

Looks are Deceiving

2009-08-15T21:31:00.004-04:00

Looks are deceiving and what I mean by that is when one looks at Brianna, they probably see a "special" child but they also see a "healthy" child. "Healthy" is far from the truth. Every second of every day that Brianna continues to breathe is a gift from God. And now, more than ever. How do we do it? We live each and every day to the fullest. Really. Today I had soooo many chores to do but guess what, I sat on the floor with Brianna and sang songs, danced and played. Held her as close to me as I could, breathing in her scent. The chores could wait. She couldn't. I took her outside and pushed her in her swing. Took lots of smiley photos (but can't locate the cable to connect camera to computer right now....tomorrow, hopefully) Brianna is just like me and her dad, she LOVES fun, crazy things. Her favorite on the swing is to go round and round.....it's hard to be sad when you look at her smiling, happy face. We are so blessed.

Ups and Downs Continue

2009-08-13T00:04:00.003-04:00

After Brianna was born our life as we knew it completely changed. For a while we were on a horrendous roller coaster ride that seemed to level off for a while. We felt like we were flying "under the radar". No more. This last month and a half has been quite stressful. Brianna has turned blue three times which means three hospital stays, 3 EKGs, 2 EEGs, 3 chest x-rays, not to mention other tests. The latest episode was this evening. Now we are up to 4 hospital trips in 6 weeks. The past couple of days Brianna has been lethargic and very sleepy and she has been very pale. Today, after an outing with Ashley, we came home and put Brianna down for her nap, at which time we had noticed that her coloring had been off for a couple of hours. So, after coming home and laying her down, we hooked her up to the pulseoximeter to measure her O2 and heart rate. O2 was good but for the first time, her heart rate was 68-75. Not a good feeling for us. Normal rates are 105-110 with a sleeping rate in the 90's. I continued to monitor the rate for over an hour and it stayed low. Too low. We started to become quite nervous. I woke her up and tried to get her heart rate up but as soon as it went up to 100 or so, it immediately dropped back down to the 70s. We were very, very worried. This low heart rate thing is new to Brianna and to us.

Background: After turning blue last week when a Ph Probe test was being administered, the hospital ran some tests. Yesterday I received a call from the Pulmonologist that was very upsetting. The tests administered last week show extreme pulmonary hypertension in Brianna's lungs. We were advised to meet with the cardiologist immediately. The Nissan Fundoplication procedure we had hoped to have done (to stop the reflux coming up and flowing into her lungs) cannot be done now due to the severity of the pulmonary hypertension. At least not until a cardiac catherazation is performed. I then called Brianna's cardiologist and heard heart-breaking news. The cardiologist told me directly that he was sorry but there was nothing else he could do for Brianna. I felt like the rug had been pulled completely out from under me. Where do we go from here? Just sit and watch our daughter die a slow death from her body's inability to draw enough oxygen due to the high pressure in her lungs? Here it was, the moment we have heard about from other T-18 families, doctors reaching a point to where they feel there is nothing else that they can do. Is it because he does not think she would survive the cardiac catherazaion and does not want the burden of her death....I don't know. All I know is we now are at a place where we truly have to decide when enough is enough. How much do we put Brianna through? Are we being selfish? What is her quality of life at this point? What will it be in the next month? Do we find another cardiologist, etc. I could go on and on.

Decision: Meet with a new cardiologist at a new hospital, meet with Brianna's entire team of docs and go from there. I wrote the above posting late last night but wanted to re-read it today when I wasn't so tired and emotional. Today, Brianna has been her usual smiling happy self. We found out that the low heart rate was ok. It is associated with heart disease. It might happen again and it might not.

Just a Quick Note

2009-08-08T11:35:00.006-04:00

We returned home Friday evening around 6 pm. Yesterday ended up being a very productive day. Usually we go to Florida Hospital (which we like) but the doctor who ordered the Ph Probe is associated with Arnold Palmer Hospital for Children so that is where we were for the last couple of days. It was good to see different doctors and to hear what they think is going on and what we should do. One doctor in particular, Dr. S was absolutely amazed to see Brianna. She is the oldest Trisomy 18 child he has ever seen. And what a show she put on for him. Goofy, silly, rolling around, sitting up, babbling, the whole 9 yards! He was mesmerized. We ended up doing another EKG and EEG, chest x-ray and a stomach emptying procedure (formula and a dye and put into her stomach through her G-tube and she laid under a scanner that recorded how long it took for her stomach to empty. She laid there an hour and a half, smiling, clapping and laughing at the many cartoon stickers on the scanner. She is so darn adorable.

We will get the results on Monday. We are still on the path of doing the Nissan Fundoplication but we also want to rule out other problems while she is in the hospital. As my husband says, it would be frustrating to do the Nissan only to find out it was something else causing the blue spells.

Here's a picture of Bri getting all wired up for an EEG. She was so patient.

After getting the wires connected, her head is wrapped to keep them in place. I HAD to add the bow.

Good News, Semi Bad News...Which one First?

2009-08-06T15:30:00.003-04:00

Good news: spot on Bri's neck does not appear to be MRSA. Must be a bug bite. Whew. Semi Bad news: we went to the hospital for the Ph Probe, which is supposed to be a no-big-deal procedure but not for little Bri. In her nose and down her throat went the thin tube and about 8 minutes later, Bri started turning blue. I think it frightened the Endoscopy nurse more than it did me. So, out came the tube and in came the doctor, nurses, respiratory, etc. After getting her back to pink and rosy, it was decided to cancel the Ph Probe but they still want Bri to stay overnight for observation.

Where do we go from here? Not 100% sure but we are talking with Bri's pediatrician and the doctors here to come up with a plan. It is very possible that we will proceed with the fundoplication procedure and hopefully that is what is needed to stop the blue spells although no one has been convinced 100% that reflux is the culprit.

Too Much Going On

2009-08-05T23:32:00.002-04:00

I know that I have been needing to post but to be honest I have been so very tired. Let's see, where do I begin, so, we drove home from Pensacola after getting an oxygen tank for the "just in case Bri turns blue while driving home" and I must say during that drive I decided that I HAD to contact Hospice again. Not because I feel her life is ending soon (oh, how I hope not) but because I need the services they offer before I lose my mind, really. What a God-send calling Hospice has been. The team that we were assigned to is the Yellow team (my favorite color) and oh, what a wonderful team it is. Bri's nurse, Kara, I felt such a connection from the moment she walked into the room. Then there was the Medical Director, who remembered Bri from the first time we had signed up for Hospice, he was so happy to see her, just the look on his face, the way he talked, he is so proud of our little angel pie. And today I had the opportunity to meet Elizabeth, the social worker, with Hospice. We clicked like nobody's business. I feel like God has personally picked this team for us. Thank you God.

But moving on, we haven't had any more "blue" spells. We are scheduled for a Ph Probe tomorrow at Arnold Palmer Hospital, it requires an overnight stay. There will be no sedation involved. Only monitoring by nurses. Big relief. There is just one very BIG thing that might keep this from happening. Like life has not been crazy enough, on Monday night before putting Bri to bed I noticed a pink nickel-sized spot on her neck. Me being the dork that I am, I retrieved the flashlight and magnifying glass to check it out. Didn't see anything that resembled a sting or bite so.....fast forward to Tuesday morning. OMG....the spot on Bri's neck is now the size of an orange, inflamed, and then inside of that, the size of a quarter, red/purple. Off to the pediatrician we went. One look and he is concerned that it might be MRSA. Big, big, big scare. He immediately put Bri on antibiotics specific for that and topical ointments. We have to return in the morning for a follow-up. I am so hoping it is a bite of some sort and not MRSA. If it is MRSA, no Ph probe tomorrow. Not sure if the antibiotics will work on MRSA or if she will have to be hospitalized for stronger meds. Will post tomorrow and let you know.

On another note, Ashley visited with us for a day and a half. What a nice visit we had. I miss that girl.

Released

2009-07-26T13:43:00.003-04:00

We have been released from the hospital. First off, I was incorrect about Bri's oxygen level being low this morning...it wasn't. Bri's toes are so small that the sensor was loose and once the nurse came in and taped it on securely everything was good. The doctor who came in a little while ago said that she suspects reflux. So, I will thicken up her formula with rice cereal and be extra careful with the oral feedings. Life goes on, one day at a time.

A big thank you to Cathy, Trish and May for their postings of Brianna on Annabel, Alyssa and Vera's blogspots. Thank you to everyone who emailed Jerry and I personally for your thoughts and prayers. We are so thankful for all of you.

Good Morning

2009-07-26T08:33:00.003-04:00

We hope to be discharged today. Brianna has not had any breathing issues since our stay although her oxygen saturation level tends to be in the low 90's. This morning the OS alarm has been going off because it has been fluctuating between 86 and 93. Yesterday she had an EEG (the first) to check her brain waves and to see if the breathing issues are being caused by seizures. No report back yet on that one. They also performed another EKG and it appeared the same as the one that was performed in Florida Hospital two weeks ago.

I posted a new video yesterday of Brianna taken by Jerry on his iPhone on our YouTube channel, BSBotts. As usual Brianna has been happy-go-lucky the entire time.

Thank you to Grandmother, Aunt Sonya and Uncle Joe, Aunt Judy and Uncle Paul for coming to visit little Bri while in the hospital.

I haven't been crying as much, the good Lord has reassured me that she is in his hands, the best care of all.

Thank you God for one more day.

Here We Are...

2009-07-25T09:57:00.002-04:00

Back in the hospital again. Early evening Brianna had another episode with breathing. One minute just fine, the next, turning pale, yawning for oxygen and becoming extremely lethargic. On top of that we are out of town visiting my family in North Florida. Off we go in the ambulance to the community hospital and 8 hours later transferred to Sacred Heart Children's hospital in Pensacola. After spending 5 hours in their Emergency Room, we are finally in a room, complete with hospital crib, twin bed AND recliner. Wooooo Hooooo. Maybe we can get some sleep.

Don't really know what to tell you about what is happening because we really don't know. Last week we thought it was pulmonary hypertension, then we were told that it was not, now we are being told that it is. Personally, the diagnosis makes sense giving Brianna's behavior.

I need to go now because I am tired beyond words. Jerry is already snoring away, and, I just don't know what to say about our little Bri. We so hope and pray that this is not the beginning to the end. We just love our little Sugar Bear so much and the thought of her not being here with us. well, it must makes us cry.

Of course I will post when we know more.

Going Home

2009-07-16T14:11:00.002-04:00

We are very happy to be going home although the reason for Brianna's episode is still unclear. After the cardiologist released her last night, we thought for sure it was an acute reflux attack but this morning the GI showed no reflux. I have to say that we know she has reflux, always had. They have been administering Pepcid so perhaps that is why they didn't see any during the procedure. Anyway, the plan is to adjust the pepcid dosage, thicken her formula and hopefully that works. There is no doubt that God continues to keep Brianna here for a reason and we will continue to give her as much love and attention as ever.

Brenda and Jerry

I feel the need to post something

2009-07-16T00:37:00.002-04:00

although I am utterly exhausted. Monday a week ago we took Brianna for a routine checkup to her cardiologist. All were surprised including the doctor when it appeared that Brianna had pulmonary hypertension, ultimately a death sentence. We were waiting to meet again with the cardiologist after he met with other specialists to review Bri's findings on the EKG. In the meantime, Tues evening, we had a scare, and a big one. Bri was good one minute and the next, with no warning whatsoever, she coughed a little cough and suddenly couldn't catch her breath, it was like something was stuck in her throat but I knew there couldn't be anything there because I had fed her by mouth approx 40 minutes earlier, then given her a bath and was sitting with her on her bed, getting ready to dress her. So after coughing for a little, her little mouth started to turn blue, then her face, then her tongue and the inside of her mouth, her eyes rolled back in her head and all I could say was no, no, no, Bri, you are not going to do this. Yeah, like she was doing it on purpose. She continued to cough and went back and forth between blue, gray and ashen. When I realized she might not pull out of it, I called 911.

Jerry and I both were very worried that this proposed pulmonary hypertension was the beginning of the end for Brianna. Bottom line, even though I would love to go into more detail but am so very tired....late today (Wednesday) after another EKG by her cardiologist, lots of prayers by family and friends, there was no indication of hypertension whatsoever. Bri has been tentatively diagnosed with acute reflux, which can be fatal if not treated. Apparently, acid refluxed up and back down into her lungs and essentially, she was drowning in her own stomach acid. Tomorrow morning an upper GI will be performed confirming the reflux. There are medications and also a procedure that can be done to help this problem. Will let you know more tomorrow. For now, zzzzzzz's....time to catch me some. Good night all. Oh, Happy First Birthday to Alyssa. You go girl!!!

Too Long

2009-07-06T22:28:00.015-04:00

Brianna and her daddy reading the paper together. Too cute I say.

Yes, I have waited too long to post but as Annabel's mum said, when things are going good, we just keep going and enjoy the moments.

I don't know what got into me about 3 weeks ago but all of a sudden I decided it was time to move Brianna out of our bedroom and into her room. The delay has been because our house is a split plan and her bedroom seemed sooooooo far away. So, while my husband was away on business, I moved Brianna into her room. The first night, she slept like a dream, me, awake all night...constantly checking the monitor to make sure it was working. Brianna has adjusted very well. She seems to sleep better and longer in her room. Although Jerry and I miss her presence in our bedroom, it was time to make this move, for all of us.

Oh, and I also found out that Brianna will have a school teacher coming to our house in the Fall to work with Brianna. Isn't that great?!!! But what is even better is that when Brianna turns 3, 3? we still can't believe it....she can attend elementary school, yeah....I know. Wow, huh. It would be the regular school hours, Monday through Friday, 8 to 2, but, she's not going to go 5 days a week all day, maybe 2 days a week, half a day, to start. The class is staffed with a nurse and appropriate teachers/helpers to assist with special needs children. How exciting...Brianna attending school.

And here's a couple of pics for you. Using my camera for the father/daughter pictures makes me want to get it out and use it a lot more.

And some more pics of when we were in Chicago at The Hancock Building. The weather was beautiful, in the 80s and very little humidity. Brianna was enjoying the sunshine as you can see. I love these pictures. She is so happy and gorgeous and her dad is so honestly happy with her in his arms.

Loving the Sunshine On My Face

Too Cool

2009-06-18T10:47:00.003-04:00

Technology is amazing. Right now, this very second, Brianna and I are onboard AirTran, IN THE AIR, on our way to Chicago to meet up with Jerry and spend the weekend. So far Brianna has been cooperating, only threw up once so far....lol, the flight rules are once a child is over 2 years old, you must purchase a seat for them. In Brianna's case, she is so small that I could hold her but rules are rules so we (or should I say I) made it to the airport (thank you Kathy for driving us) with lots of "stuff", I did a practice pack up the stroller as much as I could without flipping it, last night but forgot that I was also going to have to carry the car seat. Whew....made it. My wonderful husband who does his best to spoil me made sure we got to sit in first class, so, I am also enjoying a bloody mary, I am on vacation, yes? Anyway, Have to say the car seat was a good thing, Bri is strapped in comfortably and is happy at the moment. Already took pics and some video, will work on downloading those next week.

Special Child

2009-06-11T22:59:00.007-04:00

Baby Vera's mom posted a really special poem on her blog and it is so nice that I wanted to share it as well.

I Am The Child

I am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated, I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in developments that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your fortune - our healthy back and legs, your ability to do things for yourself. Sometimes people appear not to notice me, I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn as easily, if you judge me by the world's measuring stick.

What I do know is the infinite joy in the simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you about giving. Most of all I teach you hope and faith. I am the disabled child.

Having a child with special needs has been a phenomenal experience as well as a life-changing experience. Not only in our every-day experiences, but also in our spiritual lives.

I challenge you to the next time you come across someone with a special needs child, don't look the other way, smile and say hello. I can't tell you the number of times when people realize that Bri is different, they look the other way to avoid us. All it takes is a smile. Believe me, I already know we are very different.

More Thankful Than Words Can Say

2009-06-08T22:12:00.003-04:00

As everyone knows, we are more thankful than words can say for Brianna still being here with us and healthy (as far as we know). but let me tell you what happened last night and then today. Jerry's parents were over last night and his father mentioned that he had noticed a lump on Bri's neck.....immediately all I could think is how did I miss this? It was a lump that could be seen only when she was in a particular position and well....to say the least I couldn't believe that I had not seen it. So, today we had an appt with her GI doctor as a follow up, the wonderful news we heard from him is that SHE LOOKS FANTASTIC!!!! According to a Trisomy 18 weight/height chart, she is ABOVE the 50 percentile for weight and height. Let me remind you that trisomy 18 children remain small, we came across a 19 year old (yes, I said 19 year old) who was only 58 lbs and her height matched her weight.. that is when I stopped worrying so much about Bri not continuing to gain weight.

So, then we went immediately to her pediatrician, whom I LOVE. Dr. Chaban has been the most incredible person, I just can't say enough wonderful things about him. Anyway, after checking out the lump on her neck he said that it was a "palpable" lymph node and nothing to worry about. All I could think of was cancer...which was a possibility, but he said no and that she looked and checked out to be in tip-top shape. Oh, what a relief and you can only imagine. FYI, she now weighs 20.4 lbs and is 32" long. God, we are so incredibly blessed. Thank you.

On another note, bless Bri's dad's heart, Jerry, or should I say his back....his back went out last Wed. while in Texas. He flew home and thought it would get better in a couple of days but last night I had to take him to the ER. They said it was muscular and prescribed some pain meds. Well, today it wasn't any better so we made an appt with his orthopedic for first thing in the morning. He is so tired of crawling (literally) around the house. And to be honest, I'm tired of it too!!!! LOL. I sure hope something can be done about it in the morning for his sake.

Good night all.

Heartbreaking News

2009-06-07T16:55:00.002-04:00

In an earlier post I asked for prayers for Laurie, her husband and Lil Toot being delivered last Tuesday. Sadly, Lil Toot was born into heaven Tuesday night. I can't imagine the sadness the parents must be feeling. I also find myself wondering why her, why are some of these little angels destined to live longer than others. Why is Brianna still here yet others only have minutes or hours? We'll never know the answer. I only ask that you pray for peace for Laurie and her husband. Continued prayers too for Annabel who is recovering from surgery. Brianna is so much like Annabel, all smiles and full of fight. God Bless Them, all of them, those still here with us and those sitting in the lap of Jesus.

Prayers, We Need Prayers

2009-05-28T23:13:00.005-04:00

This morning I was contacted by a woman, Laurie, who is due to give birth to a little girl with Trisomy 18 within the next week. Coincidentally, they have planned to name her Brieanna. I ask for prayers for strength for the mother and father, this is their first child, I ask for prayers that Brieanna will be strong and here on this earth for quite some time.

I ask for prayers that Annabel, who is scheduled to have surgery next week, will come through it with flying colors. And I pray that her family, and Annabel who has such a GREAT smile, will find the strength to be strong. I am sure it is a scary and difficult time for them.

I also have to say thanks be to God for allowing our Brianna to be here with us for 24 months. Such a long time to us but in the whole scheme of things, such a short time. We are so very grateful.

Say extra prayers, please.

Thank you.

I don't know

2009-05-23T07:50:00.013-04:00

I don't know if the new video (on our YouTube channel) is playing on computers other than a Mac. If it is, someone please let me know because if it is not, then I need to figure it out.

Anyway, alot has happened the last couple of weeks. We were invited to attend the Down Syndrome Support Group and all I can say is thank you, thank you, thank you to the moms there who made us feel so welcome. Finally, a place where we fit in. Brianna was beside herself when sitting on the floor with the other children. She was clapping her hands, shaking her head in happiness and kept giving me the look of "it's about time you found me some friends!!". Anyway, a big thank you to the DS group for bringing us into their group.

We also finally made it up to North Florida to visit my family and have Brianna's 2nd birthday party. Ashley also turned 17 (yikes!) while we were up there and we celebrated her birthday by spending the day at the beach with my sister Sonya....I felt like it was my birthday too!!!

Here are some pics of Brianna before the trip, playing in her tub pool outside. She loves the water.

Haven't Figured It Out Yet

2009-05-22T17:32:00.002-04:00

I spent HOURS trying to upload a video that I made on my Mac. Obviously I was not successful. Still trying to figure it out but in the meantime I did upload it to our Youtube channel. There is a link below left. The banging noise was roofers working on my mother's house.

More to come and hopefully I can figure this out.

Oh boy...or should I say oh girl....

2009-05-19T15:08:00.003-04:00

I only have a moment but wanted to let everyone know for Mother's Day my WONDERFUL family gave me a video camera that is compatible with my Mac computer and I have been a video-ing fool!! Can't wait to share but no time today. I plan on updating Bri's site tomorrow.

Standing Tall

2009-05-07T12:06:00.005-04:00

Look at me...standing big and tall. Last week Brianna's PT, Ms. Bea, said she thought Bri was ready for a "stander" and after explaining it to me, I could hardly wait for today to come. So....here she is, loving it. No fussing, no whining, actually smiling and playing with her piano from her favorite aunt (Aunt Sonya!). The reason for the stander is for Bri to put weight on her bones in order to make them stronger. Next step will be a walker. Can you believe how big she is getting?

A Day at the Park

2009-05-02T16:57:00.017-04:00

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?!!

2009-04-30T21:44:00.004-04:00

Chillin' That's our Bri
We found this chair last December at Babies R Us and it has been perfect for Bri. Her own personal just-right-size chair. She looks like such a big girl when sitting in it properly, then she starts wiggling around and ends up like this. Honestly, I didn't pose her. She has been well and getting so big. 35 inches tall. Wooo.

Here we are...

2009-04-24T20:48:00.002-04:00

Friday night and feeling much better. Still not 100% but doing fantastic. Waiting for daddy to come home since he has been out of town most of the week. He always seems to get BIG SMILES from Bri upon his return. I know she must miss him when he's gone as do both Ashley and I. Still trying to schedule Brianna's birthday party with my family in North Florida. We are all looking forward to a little break. I hope to get it scheduled soon. Please continue to pray for Annabel. Things are better but she is still having some problems.

2009-04-21T08:19:00.011-04:00

I have so much to say. Since coming home from the hospital, it has been interesting. One day Brianna is on top of the world, the next day, sleeping most of the day, next day, smiling, happy and awake, next day....lots of resting. Slowing she is getting better. It is amazing how much the rotavirus took out of her. Today we have an appt. with the gastrointerologist and nutritionist. Since Bri's last appt with them in Oct. she has not been able to pass that 21 lb mark and right now she is below 20 lbs due to being sick. She's starting to look skinny since she has continued to grow taller so we need to figure out what to do to get her fatter. Oh, another interesting thing is that since being home, Brianna is sooooo hungry for food by mouth. Last night, or should I say this morning, she had me up at 2:15 a.m. feeding her bananas and strawberries. Did the trick, full tummy and back to sleep she went.

Resting with my Daddy

I must say thank you for the prayers for Annabel. She is feeling much better. God is so good.

Have to blog about our older daughter, Ashley. This past weekend she went to the Prom with Jordan and had a fantastic time. Proms have changed so much since I went. Theirs was held at Disney and the theme was "Night in Morroco". She came home on Cloud 19 (no typo). Here are a couple of pics of Ashley and her date Jordan.

All together now, ahhhhhhhh

Prayers for Annabel, Please

2009-04-16T22:07:00.004-04:00

Our Sweet Annabel is in the hospital and not well. I ask everyone to pray hard for answers to what is going on with her little body right now and a fast recovery and prayers to keep her family strong. To learn more you can visit her site at:

http://annabelgrace.blogspot.com/

Praise God

2009-04-11T21:25:00.003-04:00

Praise God and we mean it from the bottom of our hearts. Brianna came home today from the hospital. We still have a good 7-10 days before she is over this virus but oh how good it is to be home.

I can tell you now that we came so close to losing her on Wednesday. It is unbelieveable how quickly dehydration can take someone down. When we walked into the peds unit, Brianna was white as a sheet and completely limp in my arms. They took one look and before I knew it there was a team of medical professionals there and they immediately took Brianna up to the ped. intensive care unit. Her heart was working overtime due to the dehydration and because of that and her petite size, it was next to impossible to get an iv in. Thanks be to God, it was not her time to go and we have her for a little while longer. Makes me smile with such gratitude.

Tomorrow we will celebrate two years of life. Might not sound like much but when told initially it would be less than 24 hours....her life has been an eternity. We have been so blessed. So, tomorrow, please say a prayer of thank you for this little life that has been such a blessing to so many.

Good night.

Brenda, Jerry and Ashley

oh, and our new little puppy dog, Belina. Pics to follow.

Not Going Home Today

2009-04-10T20:19:00.007-04:00

Just a short note to say Bri is not going home today. Throwing up again and not tolerating her feeds. They are putting in an iv as I type or trying to put one it. Her veins are so small it takes someone really, really good and lucky. They have tried both feet, both hands, her neck and her head. Gave up and called in someone else to try. Last resort is a central line in her groin. Will see. Right now I think we will be here until Sunday. That is ok. God has a plan and if that's it then that's it.

Jerry is staying tonight with Bri and I plan on going home and getting some sleep, if I can sleep.

Wanted to attach this silly pic taken by Jerry with his phone. She got the glasses in an Easter Basket today. Crissy looks pretty fancy in her red glasses (BabyBeBlessedDolls.com) too.

I tell ya

2009-04-10T14:53:00.002-04:00

Unbelieveable. We were given the green light to go home. Nurses came in, removed all of the wiring from Bri. Jerry and I were packing up and guess what. Bri threw up! Now, we have to wait a couple of hours to make sure she keeps her food down. Oh well. Rather stay a couple of hours than go home and be back here in a couple of hours.

Brenda

It's Official

2009-04-10T00:30:00.002-04:00

Bri tested positive for Rotavirus and although we don't know for certain where she contracted it, we have a pretty good idea. But we will deal with the present and the future which means getting her well. She spent most of the day sleeping which means of course NOW (12:35 am) she is awake and whining quite a bit. Her tummy hurts and I think she has a headache because she keeps rubbing her head rather furiously. The nurse administered some tylenol (she had a fever a couple of hours ago) and I'm just waiting for the sleep to come.

This morning I got to go home and get several hours of sleep while Jerry stayed and took care of the Bri. She ate (by mouth) some banana baby food (with rice) and after tolerating that, she was started on pedialyte and this evening she is being fed formula and keeping it down. If she keeps this up the doc said we should be able to go home Friday. Fingers crossed everyone (prayers too) cause if we don't go home on Friday I'm sure we will be here for the weekend.

Unfortunately we will not be able to go visit my family in the panhandle of Florida and celebrate Bri's birthday on Easter but instead will stay here, get Bri well and go visit in a couple of weeks. Gotta have that 2 year birthday party! Anyway, I best go now and snuggle with a little girl, she needs me.

Brenda

Good News

2009-04-09T08:36:00.003-04:00

(Direct from Bri's Daddy)

Hello Everyone,

We have an update for all of you and so far it is good news to report. Brianna is out of ICU and she has her own room. When she checked in yesterday she was severely dehydrated and they had a real hard time finding a vein that would remain stable enough to take fluids. She was not looking so good. Very pale and frail. The doctors are thinking that she has rota virus which I have not googled yet but they still don't know for sure. If she continues to improve at the pace she is on we feel we might be able to get out of here sometime tomorrow. Of course it is dependent on the diagnoses. We are currently waiting on test results. We can not say "thank you" enough for your prayers and concern for our family. Thanks be to God!

I hate to speak too soon but

2009-04-08T23:48:00.003-04:00

Brianna is doing better. Much better. It's looking like she might have contracted Rotavirus. She finally fell asleep early this evening after getting a good amount of fluids in her and when she woke up around 9:30 pm she wanted to play. She was kicking the music box on the side of the crib on and off, on and off and I didn't stop her. The doctor suspected that she had rotavirus which would explain the vomiting and nausea but also diarrhea and that didn't happen until she woke up and wooooo the flood gates have been open.

She has finally fallen asleep again and I am going to try and get some sleep as well.

I find it amazing how people all over the world are keeping up with Brianna and praying. Have you looked at the "widget" on her website called Feedjit? It is on the left, down a little bit. It is the world map with the red markings on it showing places in the world where people have looked at Bri's website. Thank you each and every one. The prayers are working. God Bless.

Brenda

Just When You Think It's Safe to Go in the Water

2009-04-08T17:44:00.003-04:00

Everything changes. Bri is in the PICU unit at Florida Hospital. Monday night she slept 12 hours. That was the first indicator that something was up. Then Tuesday her color was off just a little. Tuesday night around 9 pm she started throwing up...all night long. This morning I started giving her pedialyte but she still continued to throw up. Off to the pediatrician's office and then sent straight to the hospital to the pediatric floor but after one look they sent her straight up to intensive care and that is where we remain. Jerry was in Chicago for an important meeting but jumped on the first flight and is here now. It is so sad to see our usually happy little Bri so sick. We are very worried. Will post as soon as we find out something.

I had to add this picture. Last Saturday we had family and a few friends over for a small early birthday celebration. Look at her beautiful dress. It was a gift from Annabel and Cathy. (Annabel has one just like it!). Wait until you see the dress she will be wearing on her actual birthday. It is just as special.

2009-03-30T22:32:00.003-04:00

I was looking through my pictures when I came across this picture of Jerry and I in Montreal in Nov of 06. It was during this trip that we found out the results of the Triple Screen test that was taken to find out if any abnormalities were present in my pregnancy. We were both elated to find out that the results were excellent...no reason to believe there was anything wrong with our unborn child. Looking back, I'm glad I didn't know. My pregnancy with Brianna was exceptional and if I would have known I'm not so sure that I would have been able to handle it. God works in mysterious ways.

Brianna is feeling better. She should be because she is on a mega-dose of antibiotics to get rid of the infection in her ear. Her 2nd birthday is approaching very quickly. Who would ever imagine we would be blessed this long with our baby girl...

More Antibiotics

2009-03-25T08:00:00.003-04:00

Well, I had to take Brianna back to the pediatrician yesterday because after 5 days of taking a z-pack along with breathing treatments, she is still not 100%. Her lungs are clear, which is a HUGE blessing but that left ear continues to ooze icky stuff. Apparently the bacteria in her ear is resistant to the z-pack which is something we have been concerned about for some time. Immunity to antibiotics. Dr. Chaban assured me that he is a specialist when it comes to infectious diseases and will be able to always find an antibiotic to fight whatever comes along. And you know what, we trust and believe him.

I have to share with you this gorgeous picture that Ashley's friend, Jesse took.

Missing our Puppy Dogs

2009-03-25T07:45:00.005-04:00

It is with sadness that I share with everyone that we are now completely dogless. Last year our liver-spotted dalmation, Brandy, passed away and this past weekend our beloved miniature schnauzer, Pepper passed. I miss Pepper so much. He was my shadow. His disposition was so sweet. I always said he had the soul of a saint...Saint Pepper. I know it sounds silly but he truly was a special little guy.

Doing some Organizing

2009-03-21T00:44:00.004-04:00

Here I am on a Saturday night taking some time to organize Brianna's website. Long gone are the days of out til the wee hours...but that's alright. There is a season for everything. After transferring my journal from another site, I've now gone in and separated the journaling and put the dates on them correctly. I added a few pictures and have so many more to add but frankly I am quite tired right now.

Brianna is doing so much better. Yesterday her left ear had some goo oozing from it, at least it wasn't blood. So now between ear drops, eye drops (pollen makes them itch), and breathing treatments, Brianna is recovering quite well. Thanks be to God.

There's another video on our YouTube channel (www.YouTube.com/bsbotts). It is the video made by the excellent staff at First Presbyterian Church of Orlando. It is of Jerry and I giving our testimony. Check it out.

More later....I am soooo tired. Goodnight.

Still Not Well

2009-03-18T20:26:00.005-04:00

Two weeks later and still not well. I had to take Brianna back to the pediatrician today. She has been on breathing treatments twice a day but this morning she was wheezing so I took her back in. After a good listen to her chest, Dr. Chaban diagnosed that one lung is clear and the other not so...we are on a second round of antibiotics and more breathing treatments. I'm not worried, yet. I truly believe a lot of this is being caused by pollen and that this too shall pass. Brianna does not have a fever and she is happy as a lark...as usual. It still doesn't hurt to ask for extra prayers.

Pollen, Pollen Everywhere!!

2009-03-14T19:26:00.005-04:00

Oh my goodness what gorgeous weather we are having here in Orlando. But Spring also means pollen. Everything outside is covered in this yellow dust which to us means big time sneezing and congestion. Brianna has been congested for the last couple of days and miserable. We're just giving her some allergy meds and breathing treatments to hopefully prevent an infection.

Can you believe she is almost two years old?!!! I'm sure I posted this before but I'm going to say it again...this year her birthday is on Easter Sunday. Isn't that something.

Blessings to you and thanks for keeping up with us.

Feeling Better

2009-03-07T09:53:00.003-05:00

Brianna is much better now. The bleeding ear turned out to be a middle ear infection. Nothing that a little antibiotics can't handle. Praise God. She is getting so big now and learning so much. Her language skills are increasing and just about every day she makes a different sound. Lately her sound has been "do it, do it, do it" it is so funny. She still hasn't mastered crawling in the traditional way but she gets up on all fours, moves her knees and hands, rolls forward or sideways, gets back up, starts over and moves all over the room. She is able to roll over and sit up by herself and we have been encouraging her to reach up and try to pull herself up.

Check out her cheesecake photo. She is soooo cute, yes?

Ashley's Turn

2009-03-04T10:32:00.003-05:00

Ashley's turn to shine. We are so proud of our oldest daughter. Let's see, how do I say this...well, to say she is 16 years old says alot in itself (for those who have teenagers). There's been a tremendous amount of difficulties in her life and it has been hard for her to figure out how to handle those difficult times. But little by little, she's been figuring it out by trial and error. She has become quite active with the youth group at our church (First Presbyterian Church of Orlando) and last summer she went on her first mission trip to New Orleans to help rebuild houses for those affected by Katrina and this summer she is saving to go on a mission trip to Jamaica to help those in need there.

Regarding school, last Fall she was held back. What a bummer. What did she do? On-line school in addition to high school. Said no to lacrosse so she could focus on school (what a change). Her hard work paid off, in January we received a letter from her high school stating that she had been promoted UP to her original grade. A Junior. How exciting and how proud we are of her. Now, all we hear is college, college, college. Originally she wanted to be a pediatric physical therapist but after seeing Brianna's speech pathologist at work with Bri, that is what she wants to do now. She knows it is going to take some time but she is determined.

Let me tell you, we KNOW God answers prayers.

On another note, several people have asked me how to post a comment. Well, below each posting is the word COMMENT. If you click on that, there you go....post away.

One more thing, I'm sure Ashley would love to hear some congrats about her accomplishments. Her email address is pinkpep1@yahoo.com.

Brenda

Here we go again....

2009-03-03T06:57:00.002-05:00

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.

So Here We Are

2009-02-26T22:26:00.003-05:00

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.........

Lots of New Stuff

2009-02-25T20:34:00.003-05:00

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

3 Little Miracles All Together

2009-02-07T17:31:00.011-05:00

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

2009-02-07T17:20:00.001-05:00

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.

Welcome to our Planet

2009-01-13T17:31:00.001-05:00

TUESDAY, JANUARY 13, 2009 07:36 AM, EST
Hello everyone,

Life here on Planet Trisomy 18 is not so bad. Brianna is improving daily. She is sitting up all by herself for a good 10-15 minutes and when she is not sitting up she is trying to crawl. She now rolls over, pulls her knees up underneath her, gets her arms in position and pushes on all fours in one quick move. Smiles so big and bold once she is up. Then she rocks back and forth moving her knees forward. She is so close to moving her arms but they are just so heavy for her. Remember these babies have very weak upper bodies so for her to lift up in on all fours is a tremendous milestone.

Jerry and I are looking forward to this coming weekend. We are going to meet a little girl (with Trisomy 18) and her family. Her name is Annabel Grace and she is......3 1/2 years old!! To see this gorgeous little girl you can visit her website. www.annabelgrace.blogspot.com

Have a blessed day.

Happy 2009 Everyone

2009-01-01T16:02:00.002-05:00

THURSDAY, JANUARY 01, 2009 04:02 PM, EST
Happy New Year!! This holiday season has been the best ever. We celebrated Christmas Eve by going out to dinner with family and friends and then attending the candlelight service at church. We spent Christmas morning here in Orlando opening gifts with Jerry's parents, Doug and Helen and then on the 26th left to visit family in north Florida. After a very nice, relaxing visit with the family we returned to Orlando in time for New Year's Eve. And the neatest thing happend New Year's Eve (and if I didn't see it myself, I would have thought it was a set-up). My nephew, Shawn and his fiance Christina came over with a homemade Spanakopita (Greek Spinach Pie) that Christina had made. In her family Spanakopita is served on New Year's Day and the person who makes it puts a quarter in the pie and whomever gets the quarter is supposed to receive good luck the following year. Well, a little after midnight, I cut the pie in various oddball sizes and walked around and made sure everyone received one. Oops...I didn't give Bri one, so her daddy picked up the smallest one on the tray and took a bite of it "for Bri". Then he promptly teased Christina about her cooking because there was a piece of tin foil in it. That's when Christina said, "no, that's the quarter!! wrapped in tinfoil." How neat is that. Bri got the good luck quarter.

And then....you do know what happens to the first person who falls asleep on New Year's Eve, especially when guests are still around....that's right, they get their toenails painted...bright red. The lucky recipient this year was Jerry. Check out the pics. That's Bri with her lucky quarter and Jerry with his gorgeous toenails!

On that note, Happy New Year to everyone once again.

Extra Christmas Blessings

2008-12-25T17:30:00.000-05:00

THURSDAY, DECEMBER 25, 2008 12:23 AM, EST
Happy Birthday Baby Jesus and Merry Christmas to everyone.

This morning was an important day for us because Brianna had an appointment for an ultrasound of her abdomen. Babies with Trisomy 18 are at high risk of cancer, tumors, and abnormalities of internal organs. Therefore it is advised to have ultrasounds every six months of their abdomens. Yet today was the first one that we had because I only recently came upon the information that we should have her checked every six months. Guess that is what happens when we are 'pioneers' in this field. One can only imagine the anxiety we felt taking her in for this exam this morning...what will the outcome be? Well, to say the least we received the best Christmas present ever....Brianna's kidneys, liver and bladder were free of any abnormalities....yehhhhhhhh. What an extra celebration we will have this Christmas day.

Blessings to everyone.

Dear Old Santa Claus

2008-12-10T17:29:00.001-05:00

WEDNESDAY, DECEMBER 10, 2008 11:02 PM, EST
Well here I am visiting with that dear old man Santa Claus and I wasn't scared not one tiny bit. I will be celebrating 20 months of life in a couple of days. Amazing.