(Isn't she gorgeous!)
Clara's my oldest daughter. She's 11 years old and was born with a bilateral cleft lip and cleft palate. She has had 13 surgeries so far and she's still not done. She'll be having surgeries well into her adult life.
She's been through so much at such a young age. The surgery before this last one was the worst one yet, (I call it the alien surgery because she had antenna coming out of each side of her head). It was difficult to say the least, she stopped breathing twice in recovery and was in ICU overnight. I've never been so scared in my life. I just remember the machines going crazy and the people running from every direction. And then them pushing Johnnie and I into the hallway, and me breaking down in his arms. I never want to feel that again.
(Hers was the one on the far right)
(Our little baby bird. When they closed her lip and nose, we missed this smile.)
Clara is shy. She hasn't always been shy, but ever since kindergarten, she has been a bit introverted,(Bad teacher experience). And when I say shy, I mean she is hidden. She has her comfort zone and it's in her shell that only she is allowed in most of the time.
She is a natural artist. She's truly amazing. She can master any artistic medium you put in front of her, probably because she started drawing as soon as she was big enough to hold a pencil. She has been drawing since she was just 2 years old. But I think her favorite is painting. She's also a designer. She gets bored and designs clothes for her dolls, she even used to take old bedsheets and use them to make dresses for her and her sister. lol :)
But now she wants to be a game designer/developer. Her dream is to go to S.C.A.D. (Savannah College of Art and Design) and she wants to go to the Savannah Campus, not Atlanta. So we will be moving there eventually.
Clara is a gamer girl. She loves Minecraft, FNAF, CoD, WoW, and other games. She is not a girly girl (though she used to be!), she is goofy and energetic, she has a weird, sometimes morbid sense of humor, and she is a big time Daddy's girl.
Clara has also been diagnosed with hypoglycemia and asthma. She has to eat throughout the day or she gets light-headed, dizzy, confused, pale, and faint. If it goes too long, she will pass out. It's just one more thing she deals with everyday and overcomes.
We found out through ultrasound that Clara was going to have a cleft just one week before my due date. We researched like crazy, cried lots of tears, had many breakdowns and then we got ready to care for our precious baby girl, a special needs baby. The tears were not for a child with a birth defect. The breakdowns were not because we were sad that our baby wasn't perfect (because she was, she is), the tears were for all we knew she'd have to go through right from birth. The breakdowns were because we weren't sure we would know how to care for her or help her when she faced the hardships we knew were coming. We knew it would be a long, hard road for her. And it has been.
When Clara was born, the hospital that we were in had no idea how to handle a cleft baby. She was one of few, if not the first that the hospital had ever seen. Our nurses told us that they had never personally seen or dealt with caring for a cleft baby. So we learned together how to feed her, which wasn't easy at all, the nurses were on the phone to Scottish Rite for most of our five day stay. She had trouble eating. She couldn't latch to me and she had trouble latching to a normal bottle. But our local hospital wasn't prepared for a cleft baby, so they did not have the special bottles, (we didn't even find out about the cleft bottles until she was 3 months old). Clara was in NICU for 12 hours before they even let me see her. She was an emergency C-section due to her heart rate rising and falling drastically during my 15 hour labor. When they went in to get her, they found that her cord had wrapped around her neck and was choking her. But they got her out and she was fine, thank God! (Except for the cleft and she was a bit jaundiced).
Clara had her first surgery at 3 months old. Her team of doctors are at the Craniofacial Center at Scottish Rite in Atlanta, Ga. They are absolutely wonderful. Dr. Burstein, her surgeon, is amazing. He is funny, and really does his best to put the child and the family at ease. (But truthfully, no matter how great and wonderful the doctor is, there is nothing that can prepare you to release your child to someone, knowing they are going back for surgery, especially that first time. We cried and held each other and were terrified to leave the waiting room even for a few minutes. We didn't sleep at all the night before, so when we finally got her back, we crashed, hard, in her room with her. I slept in the giant crib with her and Johnnie slept on the chair next to us. It's hard every surgery. You never know if something could go wrong, so it never really gets any easier. I cry every time they take her back and I don't feel like I start breathing again until they give her back to me.) But as for Dr. Burstein, he is great. He's very informative and takes the time to explain things to you so that you understand everything. He's caring, these kids are special to him, they are not just another surgery to be pad his wallet. He takes pride in his work and he really cares about the feelings of the kids and their families. That means a lot, especially in a time of such worry, fear and anxiety. I could not ask for a better surgeon. Dr. Burstein has a very special place in our family.
Clara's dentist/dental surgeon for most of her young life was Dr. Thomas. I can not even begin to tell you what that man meant to our family in the early days and still even now, (She doesn't see him anymore, at least not for now, because she has gotten older and she's moved to orthodontics). He made us feel comfortable in an office that I have never been comfortable in, (Dentists? Ewwww NO!). He was the first person we ever met on this journey. From day 1, he took care of our baby and he was always so kind and would take the time to make sure we were ok and comfortable and that we understood everything. He has a special place in our hearts.
Dr. Riski is her speech therapist. He's amazing. He got Clara to speak properly when she was struggling so hard. Now you can barely tell that she ever had a speech problem to begin with.
She has had many surgeries since her first. She has had a palate closure 3x, (it won't stay closed all the way right now, so we have to wait for the tissue to grow a bit more). She has had a lip/nose closure. She has had several revisions to her palate, lip and nose. And she's had a few dental surgeries as well. Her first tooth came in, unrooted, at one month old and had to be taken out, as well as teeth #2 and #3. She has had surgeries on her nostrils and she has had surgery to move her jaw forward, (this was the most difficult one yet. She had a hard time getting through recovery on this one). She will continue to have surgeries until she's around 18 years old from what we understand, possibly longer. She still has a fisture in her palate, a deviated septum, and her lips are uneven. She has teeth in her palate and they are very uneven, some even overlapping. The road is still long ahead of her.
She is strong. She surprises me each and every time that she goes in for a surgery. She has to be a little scared, but you'd never know it by looking at her. She is so brave. She's incredible. She has been through the ringer, but she always comes out smiling and being goofy. She's amazing, she's super smart, she's beyond beautiful, and she is my rock. My first born, my baby girl.
Dreadfully, she's becoming a teenager (preteen) and she's starting to step out into her own. It's very hard for me. She was my baby girl only yesterday, and now she is becoming a young woman with thoughts and ideas and opinions of her own. I am learning with her how to let one of my children grow up. It's not easy, not at all. She's very mature for her age. I guess because she has had to face so much, so fast. And she is the oldest of 4, so that has a lot to do with it too. I lean on her a lot and depend on her help with the other 3 kids. She's had to grow up faster than most kids her age. But she's a great kid. She's respectful and caring. She's not like most other kids her age. She's better. ;)
She is a natural artist. She's truly amazing. She can master any artistic medium you put in front of her, probably because she started drawing as soon as she was big enough to hold a pencil. She has been drawing since she was just 2 years old. But I think her favorite is painting. She's also a designer. She gets bored and designs clothes for her dolls, she even used to take old bedsheets and use them to make dresses for her and her sister. lol :)
But now she wants to be a game designer/developer. Her dream is to go to S.C.A.D. (Savannah College of Art and Design) and she wants to go to the Savannah Campus, not Atlanta. So we will be moving there eventually.
Clara is a gamer girl. She loves Minecraft, FNAF, CoD, WoW, and other games. She is not a girly girl (though she used to be!), she is goofy and energetic, she has a weird, sometimes morbid sense of humor, and she is a big time Daddy's girl.
Clara has also been diagnosed with hypoglycemia and asthma. She has to eat throughout the day or she gets light-headed, dizzy, confused, pale, and faint. If it goes too long, she will pass out. It's just one more thing she deals with everyday and overcomes.
We found out through ultrasound that Clara was going to have a cleft just one week before my due date. We researched like crazy, cried lots of tears, had many breakdowns and then we got ready to care for our precious baby girl, a special needs baby. The tears were not for a child with a birth defect. The breakdowns were not because we were sad that our baby wasn't perfect (because she was, she is), the tears were for all we knew she'd have to go through right from birth. The breakdowns were because we weren't sure we would know how to care for her or help her when she faced the hardships we knew were coming. We knew it would be a long, hard road for her. And it has been.
When Clara was born, the hospital that we were in had no idea how to handle a cleft baby. She was one of few, if not the first that the hospital had ever seen. Our nurses told us that they had never personally seen or dealt with caring for a cleft baby. So we learned together how to feed her, which wasn't easy at all, the nurses were on the phone to Scottish Rite for most of our five day stay. She had trouble eating. She couldn't latch to me and she had trouble latching to a normal bottle. But our local hospital wasn't prepared for a cleft baby, so they did not have the special bottles, (we didn't even find out about the cleft bottles until she was 3 months old). Clara was in NICU for 12 hours before they even let me see her. She was an emergency C-section due to her heart rate rising and falling drastically during my 15 hour labor. When they went in to get her, they found that her cord had wrapped around her neck and was choking her. But they got her out and she was fine, thank God! (Except for the cleft and she was a bit jaundiced).
Clara had her first surgery at 3 months old. Her team of doctors are at the Craniofacial Center at Scottish Rite in Atlanta, Ga. They are absolutely wonderful. Dr. Burstein, her surgeon, is amazing. He is funny, and really does his best to put the child and the family at ease. (But truthfully, no matter how great and wonderful the doctor is, there is nothing that can prepare you to release your child to someone, knowing they are going back for surgery, especially that first time. We cried and held each other and were terrified to leave the waiting room even for a few minutes. We didn't sleep at all the night before, so when we finally got her back, we crashed, hard, in her room with her. I slept in the giant crib with her and Johnnie slept on the chair next to us. It's hard every surgery. You never know if something could go wrong, so it never really gets any easier. I cry every time they take her back and I don't feel like I start breathing again until they give her back to me.) But as for Dr. Burstein, he is great. He's very informative and takes the time to explain things to you so that you understand everything. He's caring, these kids are special to him, they are not just another surgery to be pad his wallet. He takes pride in his work and he really cares about the feelings of the kids and their families. That means a lot, especially in a time of such worry, fear and anxiety. I could not ask for a better surgeon. Dr. Burstein has a very special place in our family.
Clara's dentist/dental surgeon for most of her young life was Dr. Thomas. I can not even begin to tell you what that man meant to our family in the early days and still even now, (She doesn't see him anymore, at least not for now, because she has gotten older and she's moved to orthodontics). He made us feel comfortable in an office that I have never been comfortable in, (Dentists? Ewwww NO!). He was the first person we ever met on this journey. From day 1, he took care of our baby and he was always so kind and would take the time to make sure we were ok and comfortable and that we understood everything. He has a special place in our hearts.
Dr. Riski is her speech therapist. He's amazing. He got Clara to speak properly when she was struggling so hard. Now you can barely tell that she ever had a speech problem to begin with.
She has had many surgeries since her first. She has had a palate closure 3x, (it won't stay closed all the way right now, so we have to wait for the tissue to grow a bit more). She has had a lip/nose closure. She has had several revisions to her palate, lip and nose. And she's had a few dental surgeries as well. Her first tooth came in, unrooted, at one month old and had to be taken out, as well as teeth #2 and #3. She has had surgeries on her nostrils and she has had surgery to move her jaw forward, (this was the most difficult one yet. She had a hard time getting through recovery on this one). She will continue to have surgeries until she's around 18 years old from what we understand, possibly longer. She still has a fisture in her palate, a deviated septum, and her lips are uneven. She has teeth in her palate and they are very uneven, some even overlapping. The road is still long ahead of her.
She is strong. She surprises me each and every time that she goes in for a surgery. She has to be a little scared, but you'd never know it by looking at her. She is so brave. She's incredible. She has been through the ringer, but she always comes out smiling and being goofy. She's amazing, she's super smart, she's beyond beautiful, and she is my rock. My first born, my baby girl.
Dreadfully, she's becoming a teenager (preteen) and she's starting to step out into her own. It's very hard for me. She was my baby girl only yesterday, and now she is becoming a young woman with thoughts and ideas and opinions of her own. I am learning with her how to let one of my children grow up. It's not easy, not at all. She's very mature for her age. I guess because she has had to face so much, so fast. And she is the oldest of 4, so that has a lot to do with it too. I lean on her a lot and depend on her help with the other 3 kids. She's had to grow up faster than most kids her age. But she's a great kid. She's respectful and caring. She's not like most other kids her age. She's better. ;)
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