So Here We Are

Getting ready for bed....

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

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

Lots of New Stuff

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

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

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

Happy day.

Brenda

3 Little Miracles All Together

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

More later. Bri's fussing for some attention.

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

Happy 16 Month Birthday Baby Girl

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

Welcome to our Planet

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

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

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

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.

Christmas Cookies

SATURDAY, DECEMBER 06, 2008 10:19 PM, EST
Oh, what a wonderful time we had making candy and cookies today with friends and family. I'm sure Bri must miss her daddy. He's away for seven days on a business trip. I know I miss him! Anyway, we're tired and headed to bed. Good night all.

Bri with her Reindeer Cookie

and my best friend Veronica and her daughter Miranda with their reindeer cookies

19 Months Old

THURSDAY, DECEMBER 04, 2008 10:07 PM, EST
Back to the doctor today for Bri's 18 month checkup (she is 19 months). Dr. Chaban made me feel really good. He told me what a fantastic mother I am to Brianna. That Jerry and I should be proud of ourselves for the care we give her. Something I don't quite understand...doesn't every parent give their child this type of love and care? Don't answer that. I already know. Anyway. Bri's lungs are clear (Yeahhhhh!!!) and she looks fantastic. Still weighs only 20 lbs which concerns me a little. She hasn't gained any weight (not has she lost any) in the last month. I spoke to her dietician yesterday and we are upping her caloric intake to see if that will add some weight to her. She is just so darn cute. She is like this little person. No longer a 'baby' although since she is petite, she is often mistaken for a 'baby'. And talk about a personality....I can't tell you how excited I am about this holiday season. Last year it was bittersweet. At that time in my mind I thought it was going to be the only Christmas with Bri and honestly, it was a very difficult time and now the only way to describe it is that I feel like I won the lottery....another year, another holiday season with both of our girls. I am on top of the world!!! God is so good.

Blessings to you and your family.

Please be sure to read the next four or five postings. It took that many to get current.

So Much to Be Thankful For

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

Chicago, Here we Come!

THURSDAY, DECEMBER 04, 2008 09:00 PM, EST

At last posting we were headed to Chicago for our first family trip out of town



and Bri was such a trooper. Check out this airport picture...



At the time we were concerned about her ears hurting (more on that later) and her screaming in the airplane, people complaining, blah, blah, blah and heck if she didn't come out smelling like a rose. In true Brianna form, once we hit Chicago, that child didn't sleep except at night when all of us went to sleep. She has never been one to miss a thing. All day long, awake and happy. Just amazing. To make a long story short, all of us had a fantastic time. Ashley and Bri had a 'sleepover'...what an excellent babysitter, yeah?



while Jerry and I attended the wedding reception. The worse of the trip was all of the stuff we had to pack and take....but well worth the memories.

Here's Jerry and his great friend Sal and another picture of Ashley. I love these pictures.

I can hear, I can hear

THURSDAY, DECEMBER 04, 2008 09:09 PM, EST
Bri has been having such problems with her ears. When she was in the hospital in June, it took 4 days to figure out that the problem was fluid in her ears. Problem is that her ears are so tiny that the doctor can't see inside of them. Looking back, we believe she has had a chronic ear infection since April. One that antibiotics couldn't clear up 100%. So off to the Ear Nose and Throat Doc. Thank goodness for experienced doctors here in Orlando. We decided to attempt to have tubes placed in her ears for drainage. I say attempt because even the highly experienced doc wasn't sure if he would be able to place the tubes in her ears. The procedure day came and Praise be to God that yes, he was able to place the tubes in her ears. (That was about 6 weeks ago). The doctor said that she could probably hear 30 decibels higher. We noticed a change in her immediately. Interesting thing is that she used to be startled easily, now she's not. Hmmm.

Personal Testimony at Church

THURSDAY, DECEMBER 04, 2008 09:59 PM, EST
Our Testimony. Months ago we were asked if we would be interested in sharing our testimony in church. Jerry and I both said yes without hesitation. Well, they filmed it, thank goodness because both of us couldn't help but cry at times. And let me tell you, the media crew at First Presbyterian Church, Downtown Orlando, is amazing. I do have to say in my defense, although I am a talker, my husband is MORE of a talker than I but during this interview, he couldn't say very much without getting upset so I spoke most of the time. To see the testimony, follow these directions....there must be an easier way but computer literate I'm not...so

www.fpco.org/worship/multimedia.aspx?id=344

Then, in the top 1/3 of the page you will see 'Categories:' followed by 'Sermons'. Click on 'Sermons'

Then you will see 'Personal Testimony, Nov. 23, Jerry and Brenda Botts' Click on that. And then when the picture of the sanctuary comes up, click on the arrow on that picture.

Heart-felt News

MONDAY, OCTOBER 06, 2008 10:12 PM, CDT
Woo Hoo here I am again with some fantastic news. Today we met with Brianna's cardiologist, Dr. Ramos for her six month echocardiogram. Meeting with him was really special. He is one of her doctors whom you could tell in his actions and demeanor that he has such admiration for Brianna and her strong spirit. His report at the end of the meeting is that her heart is doing so well that he does not need to see her for a repeat echocardiogram for a full year.....Yay!!! He also noticed that Brianna is not a "baby" anymore but that she is growing up...it's funny because she IS growing up but yet she is so petite. For an example, and a darn good one, take a peek at some photos we had taken this past weekend by our wonderful photographer Martha Bravo. Go to www.marthabravo.com and then click on her "blog". Brianna looks so grown up not to mention our 16 year old (who will be a senior next year..yikes!!!). I feel like I look so old in these pictures compared to before Brianna was born. Guess that is what happens when you cry a million plus tears, huh. My husband looks great....men always age very well. Anyway.....we are all very excited about this upcoming weekend. Headed to Chicago for our very first "family" vacation (family get-togethers don't count, ya know). The son of a very good friend is getting married and we are going for the wedding...Thursday through Sunday. Everyone is looking forward to it. Will let you know next week how it went. I have to admit I am a bit anxious about making sure I pack everything Bri needs without taking so much it wears us out. Hmmm. will get back to you on that next week.
Happy Monday to everyone....Brenda
P.S. What I forgot to add is what a cranky baby Brianna was during the photo shoot. So unlike her. Of all days she didn't get a good nap in and even though it was late in the afternoon, it was still too bright outside for her. So....only one small sponge-bob smile and few peeks at her eyes.

Tiny Ears, Big Trouble

SUNDAY, SEPTEMBER 28, 2008 04:56 PM, CDT
Shame on me. It has been an entire month since I have journaled yet it feels like it was only last week. Alot has happened in the last month. At last posting Bri was running a low grade temperature and rubbing her ears. I've mentioned before since her ears are so tiny, her ear canals are even smaller and her pediatrican cannot see inside them. So we took her to an ear specialist who with his specialized tools could barely see inside. It was determined that she had another ear infection which calls for more antibiotics.
She also started music class on Wednesday mornings. The first two weeks she simply was overwhelmed. 15 children in one small room is alot to get used to. By week 3, she was doing better and actually smiled instead of having big "O" eyes!!!
Also, we had the pleasure of having my sister Judy and my mother, come and stay with Brianna and Ashley while Jerry and I took a mini-vacation. Yeah....imagine that. The first time away since Brianna's arrival. We thoroughly enjoyed ourselves at the beach for those 4 days while Brianna and Ashley enjoyed having Aunt Judy and Grandma here to spoil them rotten!
After our return we noticed Brianna rubbing her ears...again. You guessed it. ANOTHER ear infection and more antibiotics. Not sure where this path is going to lead although we have a good idea. The ear specialist told us he could put tubes in her ears, no, actually he didn't say he could put tubes in her ears, he said he could only TRY since her ears are so small. So...that is where we stand on that issue.
I can't tell you how excited I am about the upcoming holidays. Jerry and I were talking on the way home from church today about how last year this time it was, um, shall I say a bittersweet time of year. We were trying to enjoy the holidays yet in the back of our minds we only thought we would get to have one holiday with Brianna...and look where we are today. We get to have another season of holidays with our baby girl....as I have said before...God is so good. He's been good to me...to our family.
Oh, finally...new photos. Four of them

One Year Later....after the Heart Surgery

THURSDAY, AUGUST 28, 2008 09:37 PM, CDT
Today's date seemed familiar somehow...August 28th... and that is when I realized that today is one year since Brianna had her open-heart surgery. Can you believe it? She is doing fantastic. Although I do have to say that for the last couple of days she has not been herself. Earlier this evening she was running a low-grade temperature. Easy to say not to worry. But we do. Could it be a bug she picked up at the hospital last week during her eye surgery?....a cold?....or just from recovery from the surgery itself? Most parents would just let it go but we can't. If she is still running a fever in the morning I will take her to the doctor. Probably just an ear infection (we hope). It's very hard though because living with T-18... it could be anything and anything could be fatal.
Not to worry. We have faith and faith can move a mountain. Will keep you posted tomorrow.
But on a good note, if you smile at Brianna, she will smile back at you. God bless this baby girl!!!
Actually, what I really should say is God has blessed US with this baby girl. Amen.
Mama

I Can See, I can see!!

SUNDAY, AUGUST 24, 2008 09:08 PM, CDT
Oh my goodness. I can't wait to post some new pictures of the Bre-ster with her "new" eyes. Amazing. She is staring at EVERYTHING like it is the first time she has seen it. Actually, I have to be honest, after seeing her reaction I crossed my eyes and looked around. Heck, that is all it took for me to realize what she is amazed at. And, as you have read in the past where I have written about how happy she is. Even now, when we were told that her eyes would feel like there is sand in them and she would be trying to scratch them. You wouldn't think it by seeing her. She is her usual happy smiley self. God bless this baby girl. Pictures soon...I promise.

New Eyes

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SUNDAY, AUGUST 24, 2008 09:08 PM, CDT
Oh my goodness. I can't wait to post some new pictures of the Bre-ster with her "new" eyes. Amazing. She is staring at EVERYTHING like it is the first time she has seen it. Actually, I have to be honest, after seeing her reaction I crossed my eyes and looked around. Heck, that is all it took for me to realize what she is amazed at. And, as you have read in the past where I have written about how happy she is. Even now, when we were told that her eyes would feel like there is sand in them and she would be trying to scratch them. You wouldn't think it by seeing her. She is her usual happy smiley self. God bless this baby girl. Pictures soon...I promise.

FRIDAY, AUGUST 22, 2008 07:47 PM, CDT
Hello everyone. Well, we had a long day at the hospital today. Brianna was scheduled to be at an out-patient facility for her eye surgery (to straighten out her cross-eyes) this morning at 8:30. For those of you who don't know where we live, well, we are here smack dab in the middle of Fay-land (hurricane-speaking). It has been raining non-stop for DAYS. Anyway, we made it to our appointment only to be told by the anesthesiologist (sp?) that she was concerned about performing the surgery at an out-patient facility due to Bri's Trisomy 18 diagnosis and that they would prefer that it be performed at a hospital just in case she ended up needing special care. Lucky for us they were able to squeeze us in at the hospital so....we now have a gorgeous non-crossed eyed little girl. Me, Jerry and Ashley all have to admit though, we miss Brianna's little trademark eyes...they were so darn cute!!!!
She went through the surgery just fine. Waking up from the anesthesia was the time-consuming part. It took her forever. I don't think the doctors were overly worried, although they were concerned because it took her awhile to finally wake up. We are now home and she is, as usual, such a trooper. Oh, how we love this girl!!! Will post pictures soon. I promise. Have to, she is so darn cute!!! (Am I a proud mom or what?!)
Thanks for tuning in.

Thank you to our Amazing God

MONDAY, JULY 28, 2008 08:56 PM, CDT
Hello everyone. The biggest thing I can say is that I wish each and every one of you could experience Brianna in the here and now. She is AMAZING. This child, once in her presence, you know without a doubt, there is a God. A magnificent God. My heart overflows with such gratitude that she is doing so well. So happy. Oh my goodness, the smiles and the giggle this child has just lifts me to a place that I have never been before. And to see her face when her daddy walks into the room. Oh, giant smiles for him. And her sister, oh....Brianna gives the big "O" smile showing all of her teeth for her sissy. There's no doubt she knows who we are. You can't imagine the joy this brings to us.
When she returned home from her last hospital stay we found that she had regressed in her learning. She no longer wanted to try and crawl, she only wanted to lay on her back. We have worked incessantly to bring her back and like a light switch, she's back on. Rolling, rolling, rolling, trying like the dickens to crawl and eat. This child wants food by mouth. The real kind. Her favorite? Green beans. Loves them!!!
Brianna's life has made such a mark in our lives. Ashley, our 16 year old daughter was in summer school this past month and when an assignment came up to write about your "hero". She chose Brianna. Not to keep you in suspense, but I have plans to make a video of that assignment and post it on you tube. In the meantime, Ashley, our other incredible 16 year old daughter is in New Orleans on a mission trip with our church's youth, rebuilding a church and housing for those who need it. May God bless her for she has traveled a long road to get to where she is now.
Please keep Ashley and her fellow youth members in your prayers as well.
Oh, by the way, I posted a new video on you tube. It is the original newscast of Brianna. They ended up cutting it due to the fires that were happening in Central Florida at the time.
Enjoy. Good night.