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.
Thursday, December 25, 2008
Wednesday, December 10, 2008
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.
Saturday, December 6, 2008
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
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
Thursday, December 4, 2008
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.
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.
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.
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.
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.
Sunday, November 23, 2008
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.
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.
Monday, October 6, 2008
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.
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.
Sunday, September 28, 2008
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
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
Thursday, August 28, 2008
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
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
Sunday, August 24, 2008
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.
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
Sort by: Date
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.
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.
Monday, July 28, 2008
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.
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.
Wednesday, July 9, 2008
Keeping us on our Toes
WEDNESDAY, JULY 09, 2008 09:40 PM, CDT
It's been so nice to have Brianna home this past week but also a bit nerve-racking as well. She came home feeling pretty good but within a few days went down-hill quick. The congestion returned and her breathing became labored. We were a bit worried to say the least. On Sunday we were torn between taking her to the Emergency Room or waiting until Monday to see her pediatrician. Because she seemed to be holding her own, we waited until Monday and took her to the pediatrician only to find out he was on vacation. So we made a decision on our own and that was to withhold one of the prescriptions she was sent home with from the hospital. Our thought was that one of them was affecting her. We were correct. The steroid nose spray was causing (at least this is what we think) aggravation of her sinues and causing severe swelling and congestion. By Tuesday afternoon/evening, the Brianna we know, was coming back. Oh, I can't tell you the relief.
Check out her new photo. She was enjoying "reading" her book with her best friend, Chrissy.
It's been so nice to have Brianna home this past week but also a bit nerve-racking as well. She came home feeling pretty good but within a few days went down-hill quick. The congestion returned and her breathing became labored. We were a bit worried to say the least. On Sunday we were torn between taking her to the Emergency Room or waiting until Monday to see her pediatrician. Because she seemed to be holding her own, we waited until Monday and took her to the pediatrician only to find out he was on vacation. So we made a decision on our own and that was to withhold one of the prescriptions she was sent home with from the hospital. Our thought was that one of them was affecting her. We were correct. The steroid nose spray was causing (at least this is what we think) aggravation of her sinues and causing severe swelling and congestion. By Tuesday afternoon/evening, the Brianna we know, was coming back. Oh, I can't tell you the relief.
Check out her new photo. She was enjoying "reading" her book with her best friend, Chrissy.
Sunday, June 29, 2008
It's So Good to Be Home, Toto
SUNDAY, JUNE 29, 2008 10:01 PM, CDT
Yea!! We're home!!! Three days of daily shots (one in each thigh at the same time) and Bri is healthy enough to come home. What a difference in her behavior. She has been talking and smiling up a storm all day. I guess when someone is gradually becoming sick, you don't notice the behavior as much. She was still smiling and pretty happy even when sick but now she is REALLY happy and smiling.
It is so nice for our family to be back under one roof again.
Happy Day
Yea!! We're home!!! Three days of daily shots (one in each thigh at the same time) and Bri is healthy enough to come home. What a difference in her behavior. She has been talking and smiling up a storm all day. I guess when someone is gradually becoming sick, you don't notice the behavior as much. She was still smiling and pretty happy even when sick but now she is REALLY happy and smiling.
It is so nice for our family to be back under one roof again.
Happy Day
Friday, June 27, 2008
Not As Bad As We Thought
FRIDAY, JUNE 27, 2008 01:01 PM, EDT
Ok, the doctor was just in and this is what they have come up with. After doing a CT scan last night they found fluid in Brianna's right ear and found her right sinus area to be full of fluid. With Brianna it's hard to determine if she has an ear infection because her ears are so tiny that the doctor can't see inside with his normal tools. We would have to take her to a specialist who has itty bitty tools to see in her itty bitty ear canals. So an ear infection combined with a cold, add some aspiration = what she has (I am so professional, yes?). So, now they are going to give her a shot to combat the ear and sinus problem and we should see a huge difference in the next 24 hours. She wasn't given any antibiotics earlier because when they took blood samples, her counts were normal.
So with that news hopefully we will be going home soon. Will let you know when we do.
Ok, the doctor was just in and this is what they have come up with. After doing a CT scan last night they found fluid in Brianna's right ear and found her right sinus area to be full of fluid. With Brianna it's hard to determine if she has an ear infection because her ears are so tiny that the doctor can't see inside with his normal tools. We would have to take her to a specialist who has itty bitty tools to see in her itty bitty ear canals. So an ear infection combined with a cold, add some aspiration = what she has (I am so professional, yes?). So, now they are going to give her a shot to combat the ear and sinus problem and we should see a huge difference in the next 24 hours. She wasn't given any antibiotics earlier because when they took blood samples, her counts were normal.
So with that news hopefully we will be going home soon. Will let you know when we do.
Thursday, June 26, 2008
Not so Good News
THURSDAY, JUNE 26, 2008 10:18 AM, EDT
I tell you what. It takes me forever to update Brianna's website and after giving such wonderful news, it's time to update it again with not so good news.
In the previous posting, I mentioned that Brianna had some congestion, well, she was admitted to Florida Hospital last Monday to get it taken care of. Wish it was that easy. Here it is Thursday, and we are still here. Thank goodness though that it is not pneumonia. Right now the doctors are saying it is a bronchial virus and she is being treated with breathing treatments. Plus she is on oxygen because the virus is making it hard for her to get enough oxygen in her blood. We could do the breathing treatments at home but taking the oxygen home apparently is a big deal and they would rather we wait out the virus at the hospital. There is a possibility that it is not a virus at all but could have been caused by chronic aspiration. They will be running some tests to determine if that is the case after she recovers from this bronchial inflammation.
I will keep you posted.
I tell you what. It takes me forever to update Brianna's website and after giving such wonderful news, it's time to update it again with not so good news.
In the previous posting, I mentioned that Brianna had some congestion, well, she was admitted to Florida Hospital last Monday to get it taken care of. Wish it was that easy. Here it is Thursday, and we are still here. Thank goodness though that it is not pneumonia. Right now the doctors are saying it is a bronchial virus and she is being treated with breathing treatments. Plus she is on oxygen because the virus is making it hard for her to get enough oxygen in her blood. We could do the breathing treatments at home but taking the oxygen home apparently is a big deal and they would rather we wait out the virus at the hospital. There is a possibility that it is not a virus at all but could have been caused by chronic aspiration. They will be running some tests to determine if that is the case after she recovers from this bronchial inflammation.
I will keep you posted.
Saturday, June 21, 2008
Popping the G-Tube Out...Yikes!!
SATURDAY, JUNE 21, 2008 10:26 PM, CDT
Hello everyone. We have had a good last couple of months. Brianna is now 14 months old. Praise be to God. She is sitting upright all by herself and trying so hard to crawl on hands and knees. She is getting around though quite well on her knees and head down on the floor...pretty soon she is going to rub all the hair off the front of her head if we aren't careful. A couple of weeks ago she managed to scoot between the couch and ottoman, all of perhaps 12 inches. That was rather amusing. And talk about happy, Brianna is so happy, big goofy grins all of the time. She has started laughing out loud too. Oh, what sweet sounds to hear. She currently has a bit of a cold, the congestion is what we are concerned with. But in true Brianna form, she is fighting it just like the best of them.
We took a mini vacation a couple of weeks ago up to the panhandle of Florida. My niece was getting married so we went and stayed for a week. To say the least, my mother was in heaven to have us there with her. Brianna spent several hours at the beach (Destin) and even went swimming. She loves the water. Always has.
Of course the visit wasn't uneventful.....is our life ever? One evening I was putting her to bed and when I leaned over the playard to lay her down, I pressed the tube to her G-tube against the railing (of course unintentionally) and heard a loud "POP". Yes, you guessed it, I pulled up her pajama top and her G-tube was not there. Yelled "Oh my Goodness" so loud that my mother and eldest daughter (my husband had to leave on a business trip and wasn't there at the time) came running. But thank goodness for Bri's GI doctor, Dr. Borenstein, for showing me how to put it back in. Ashley retrieved the diaper bag with the proper "stuff". My mother and Ashley held Brianna still, and although I was shaking like a leaf, I was able to insert the G-Tube back into her tummy. Whew!!! How was Brianna while this was going on? Smiling (surprised?) and not a bit concerned. Of course I stayed up another hour and a half to make sure I did indeed put it back properly (and to calm my nerves!).
Something else new to Brianna is her group therapy class for the month of June. This is the first time Brianna has actually been engaged with other children her age. We have been invited to playgroups but I have been too nervous about GERMS. But anyway, at the first session, Brianna could not keep her eyes off another toddler by the name of Elise. Elise had just learned how to stomp her feet and Brianna didn't quite know what to make of it. We missed the second group since we were out of town but at the third one, there was a sweet girl with Downs Syndrome who just wanted to kiss Brianna, the entire time. I would like to find a playgroup for Brianna but the GERM thing scares me.
Oh one more thing before I go. Bri now has three teeth. Two bottom and one top. Her other top front tooth should be coming through any day.
Love hearing from everyone. Thank you so much for your thoughts and prayers. They're working!!!
Hello everyone. We have had a good last couple of months. Brianna is now 14 months old. Praise be to God. She is sitting upright all by herself and trying so hard to crawl on hands and knees. She is getting around though quite well on her knees and head down on the floor...pretty soon she is going to rub all the hair off the front of her head if we aren't careful. A couple of weeks ago she managed to scoot between the couch and ottoman, all of perhaps 12 inches. That was rather amusing. And talk about happy, Brianna is so happy, big goofy grins all of the time. She has started laughing out loud too. Oh, what sweet sounds to hear. She currently has a bit of a cold, the congestion is what we are concerned with. But in true Brianna form, she is fighting it just like the best of them.
We took a mini vacation a couple of weeks ago up to the panhandle of Florida. My niece was getting married so we went and stayed for a week. To say the least, my mother was in heaven to have us there with her. Brianna spent several hours at the beach (Destin) and even went swimming. She loves the water. Always has.
Of course the visit wasn't uneventful.....is our life ever? One evening I was putting her to bed and when I leaned over the playard to lay her down, I pressed the tube to her G-tube against the railing (of course unintentionally) and heard a loud "POP". Yes, you guessed it, I pulled up her pajama top and her G-tube was not there. Yelled "Oh my Goodness" so loud that my mother and eldest daughter (my husband had to leave on a business trip and wasn't there at the time) came running. But thank goodness for Bri's GI doctor, Dr. Borenstein, for showing me how to put it back in. Ashley retrieved the diaper bag with the proper "stuff". My mother and Ashley held Brianna still, and although I was shaking like a leaf, I was able to insert the G-Tube back into her tummy. Whew!!! How was Brianna while this was going on? Smiling (surprised?) and not a bit concerned. Of course I stayed up another hour and a half to make sure I did indeed put it back properly (and to calm my nerves!).
Something else new to Brianna is her group therapy class for the month of June. This is the first time Brianna has actually been engaged with other children her age. We have been invited to playgroups but I have been too nervous about GERMS. But anyway, at the first session, Brianna could not keep her eyes off another toddler by the name of Elise. Elise had just learned how to stomp her feet and Brianna didn't quite know what to make of it. We missed the second group since we were out of town but at the third one, there was a sweet girl with Downs Syndrome who just wanted to kiss Brianna, the entire time. I would like to find a playgroup for Brianna but the GERM thing scares me.
Oh one more thing before I go. Bri now has three teeth. Two bottom and one top. Her other top front tooth should be coming through any day.
Love hearing from everyone. Thank you so much for your thoughts and prayers. They're working!!!
Tuesday, May 13, 2008
Bri's 15 Minutes of Fame
TUESDAY, MAY 13, 2008 08:16 AM, CDT
Good morning. Well, Brianna certainly has received her 15 minutes of fame. We were very pleased with the story presented by David Martin on Fox 35. If you missed it, you can go to www.myfoxorlando.com and in the search box type in Brianna, when the story comes up, click on it and to view the video, double click on that. Hope you enjoy it as much as we did. Need to go, off to therapy with Brianna.
Good morning. Well, Brianna certainly has received her 15 minutes of fame. We were very pleased with the story presented by David Martin on Fox 35. If you missed it, you can go to www.myfoxorlando.com and in the search box type in Brianna, when the story comes up, click on it and to view the video, double click on that. Hope you enjoy it as much as we did. Need to go, off to therapy with Brianna.
Friday, May 9, 2008
Getting Ready for the Big Story
FRIDAY, MAY 09, 2008 09:57 AM, CDT
Good morning. Remember when I mentioned that Fox 35 news was doing a story on Brianna. Well, I received a call last night and the story will be on Monday, May 12th (ironically Brianna's 13 month birthday) at 10:00 p.m. And if you watch Fox 35 over the weekend, there will be "advertising" if that is what you would call it, about the story. For those of you who are out of the area, I understand it will be on their website to view for two years. Of course we have no idea how it will be presented other than it is supposed to be a feel good story. We'll see.
Good morning. Remember when I mentioned that Fox 35 news was doing a story on Brianna. Well, I received a call last night and the story will be on Monday, May 12th (ironically Brianna's 13 month birthday) at 10:00 p.m. And if you watch Fox 35 over the weekend, there will be "advertising" if that is what you would call it, about the story. For those of you who are out of the area, I understand it will be on their website to view for two years. Of course we have no idea how it will be presented other than it is supposed to be a feel good story. We'll see.
Sunday, May 4, 2008
Video Says it All
SUNDAY, MAY 04, 2008 10:05 AM, CDT
Hello there. I've added two new photos that you might want to check out. Didn't add any birthday pics because if you went to YouTube and saw her video, it says it all.
Last week we stopped by my former place of employment and the response was very heartwarming. Thank you. Bri didn't dissapoint because she put on her gorgeous smile with her one tooth showing. Oh, did I forget to tell you that her first tooth popped through on her first birthday? It is so itty bitty (just like her) but oh, so cute. It's now in far enough that when she smiles it shows. So cute! She has three more that are working there way in as well.
Brianna is working so hard on her neck muscles. Babies with T18 have weak upper bodies hence it is not unusual for them to never crawl. But our Brianna is trying so hard. She gets her little feet up under her and her arms under her and she just pushs and pushs and pushs. We think she will get there. It's just a matter of time.
Need to go now. Wishing you a great day.
Hello there. I've added two new photos that you might want to check out. Didn't add any birthday pics because if you went to YouTube and saw her video, it says it all.
Last week we stopped by my former place of employment and the response was very heartwarming. Thank you. Bri didn't dissapoint because she put on her gorgeous smile with her one tooth showing. Oh, did I forget to tell you that her first tooth popped through on her first birthday? It is so itty bitty (just like her) but oh, so cute. It's now in far enough that when she smiles it shows. So cute! She has three more that are working there way in as well.
Brianna is working so hard on her neck muscles. Babies with T18 have weak upper bodies hence it is not unusual for them to never crawl. But our Brianna is trying so hard. She gets her little feet up under her and her arms under her and she just pushs and pushs and pushs. We think she will get there. It's just a matter of time.
Need to go now. Wishing you a great day.
Thursday, April 24, 2008
Better than Pictures, I think.
THURSDAY, APRIL 24, 2008 09:04 PM, CDT
I know I said I would post pictures of the birthday but haven't done it yet. But guess what...I have something better!!! Go to our YouTube channel at www.youtube.com/bsbotts and you will be able to see the wonderful video that Martha Bravo created just for us. She is awesome!!!
I know I said I would post pictures of the birthday but haven't done it yet. But guess what...I have something better!!! Go to our YouTube channel at www.youtube.com/bsbotts and you will be able to see the wonderful video that Martha Bravo created just for us. She is awesome!!!
Saturday, April 12, 2008
Brianna is Now Considered a Long Term Survivor
SATURDAY, APRIL 12, 2008 11:08 PM, CDT
Oh, what a wonderful day!!! Brianna's first birthday. What a celebration.....our family, grandparents, godparents, friends from Chicago but mostly friends from here in our hometown, Orlando. Thank you everyone for your love and support. Will post pictures tomorrow. Pretty tired right now. Goodnight and thanks again to everyone.
Oh, what a wonderful day!!! Brianna's first birthday. What a celebration.....our family, grandparents, godparents, friends from Chicago but mostly friends from here in our hometown, Orlando. Thank you everyone for your love and support. Will post pictures tomorrow. Pretty tired right now. Goodnight and thanks again to everyone.
Wednesday, April 2, 2008
Getting Ready for the Big First Birthday
WEDNESDAY, APRIL 02, 2008 08:27 PM, CDT
Well here we are getting ready for Brianna's one year birthday. Her grandmother is in town and we are planning festivites. Can you believe it?!!!! What a wonderful thing to be celebrating. As I said last week, she is growing by leaps and bounds. As a matter of fact she has outgrown her infant car seat. It was like all of a sudden I noticed her feet sticking right out of the end of her car seat and it was like hmmmm.....better check this out and when I did, although her weight is within the range, her height is not. So, off to the store the family went and now Brianna has a big-girl car seat!
Other exciting news, Fox News will be doing a spiel on Brianna. They found out about her through photographer Martha Bravo. They have already been to our house to interview and tape. Next they will be going with us to Bri's therapy session and also to meet with one of her doctors. When I find out the date of our little movie star's debut, I will post it here on Bri's website.
Well here we are getting ready for Brianna's one year birthday. Her grandmother is in town and we are planning festivites. Can you believe it?!!!! What a wonderful thing to be celebrating. As I said last week, she is growing by leaps and bounds. As a matter of fact she has outgrown her infant car seat. It was like all of a sudden I noticed her feet sticking right out of the end of her car seat and it was like hmmmm.....better check this out and when I did, although her weight is within the range, her height is not. So, off to the store the family went and now Brianna has a big-girl car seat!
Other exciting news, Fox News will be doing a spiel on Brianna. They found out about her through photographer Martha Bravo. They have already been to our house to interview and tape. Next they will be going with us to Bri's therapy session and also to meet with one of her doctors. When I find out the date of our little movie star's debut, I will post it here on Bri's website.
Tuesday, March 25, 2008
11 Months and Going Strong
TUESDAY, MARCH 25, 2008 08:52 PM, EDT
Hello there. Such good news....Brianna is doing so very well. At 11 months she weighs 17 lbs 2 oz. and has the cutest turkey drumstick legs you have ever seen! For her condition, at one year, she will be considered a long term survivor. I think we should be considered long term survivors as well.
Bri has been making the sweetest little sounds for quite some time but imagine our surprise when a couple of weeks ago out of her mouth came "da da". And to top that off, she was in her daddy's arms at the time. To say the least we both melted and her daddy is very proud.
Bri has been doing so many new things in the last couple of weeks that it (or should I say "she") is amazing. She is purposely playing with toys with her hands, laughing out loud and rolling, rolling, rolling. She is such an inspiration to us. And to top if off, she is such a happy smiley baby girl.
God has been smiling on us. I hope he continues.
Hello there. Such good news....Brianna is doing so very well. At 11 months she weighs 17 lbs 2 oz. and has the cutest turkey drumstick legs you have ever seen! For her condition, at one year, she will be considered a long term survivor. I think we should be considered long term survivors as well.
Bri has been making the sweetest little sounds for quite some time but imagine our surprise when a couple of weeks ago out of her mouth came "da da". And to top that off, she was in her daddy's arms at the time. To say the least we both melted and her daddy is very proud.
Bri has been doing so many new things in the last couple of weeks that it (or should I say "she") is amazing. She is purposely playing with toys with her hands, laughing out loud and rolling, rolling, rolling. She is such an inspiration to us. And to top if off, she is such a happy smiley baby girl.
God has been smiling on us. I hope he continues.
Saturday, February 16, 2008
Happy 10 Month Birthday
SATURDAY, FEBRUARY 16, 2008 10:31 AM, EST
Happy 10 month birthday to Brianna.....amazing, yes? Bri now weighs 16 lbs., rolls over from stomach to back easily and from back to stomach occasionally, we're working on building her upper body strength. She continues to eat solid foods by mouth and practices drinking from a sippy cup. It seems like everyday she is doing something new from focusing on a particular object, giggling when we tickle her, reaching and playing with her toys. These are big accomplishments for a baby with Trisomy 18. She brings so much joy to our family.
She hasn't been sick except for a couple of colds that lasted the normal 7-10 days and right now there is so much pollen in the air here, she has a bit of hayfever. What a sweet baby girl.
Happy 10 month birthday to Brianna.....amazing, yes? Bri now weighs 16 lbs., rolls over from stomach to back easily and from back to stomach occasionally, we're working on building her upper body strength. She continues to eat solid foods by mouth and practices drinking from a sippy cup. It seems like everyday she is doing something new from focusing on a particular object, giggling when we tickle her, reaching and playing with her toys. These are big accomplishments for a baby with Trisomy 18. She brings so much joy to our family.
She hasn't been sick except for a couple of colds that lasted the normal 7-10 days and right now there is so much pollen in the air here, she has a bit of hayfever. What a sweet baby girl.
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