Hello world, my life has been crazy. A beautiful, scary, unknown, wonderous life. I could use so many other words to explain how I feel. Since I have blogged I have a beautiful baby girl who has a rare chromsome abnormality called Xq22-q28. And a lot of wording goes along with it. Honestly I don't think very many people understand what I am telling them when I explain it. I think the best person that knows what it is is my Mom haha. I use to think chromosome abnormalities were just the deadly ones like Trisomy's or the well known Down's syndrome. So many abnormalities are out there and people just don't know it unless they know someone or are experiencing it themselves. When Lucy was first born she was a little peanut 3lbs 9.5 oz and 15 incles long. It's a complete miracle this child was born alive. She was in the NICU for almost 7 weeks. The first couple of weeks were very up and down for me. Not being able to take your child home from the hospital is excruitating. I balled and balled when we got home, and it doesn't help when you are hopped up on pain pills. Also a baby had died next to Lucy in the NICU and it had me shaken up.
Lucy had all these tests run on here to see why she was born so small. The Placenta was small and her umbilical cord was smaller than the width of a pencil. She has the smallest belly button ever, I challenge anyone to show me a smaller belly button haha. Her tests were coming out good until one day the nurses say they had gotten some results and to talk to the Neonatologist. So, I get on the phone and Dr. Burgar tells me that she tested positive for a chromsome abnormality. I was so confused, and had so many emotions running. They were going to do a more extensive test called a Micro Array Essay to see exactly what it was. Almost 2 long weeks go by and then another one of the Neo's comes up to me and says they got the results. He takes a look at it and says really loud "Oh My Gosh I need my glasses". Me and my Mom are pretty much horrified as we watch him run out to get his glasses. He sits us down and says well I'm telling you something you already know. And I'm thinking I have no clue what is going on. So, I ask him and he really doesn't know. He is an interesting fellow, I like him but don't like him. I was so confused... I had to wait to see a Geneticist. I spent many days just having a smile on my face, and then I would run away somewhere and cry out of nowhere. It wasn't very often, but I had my moments. When we saw the Geneticist it was after the seizures started, those crappy seizures. Those seizures I invision in my head when I punch the crap out of the bag in Kick boxing class. She was doing pretty well and then those started and the crap hit the fan. Ah.. that is when I started to really lose it and just cry and cry and Lucas would just reassure me. Me and him have had to reassure each other through these tough times. Lucas doesn't like to talk about it, it's a guy thing. Guy's cope differently than girls, girls just pour out emotions. Guys say like two words and walk away haha. Not all guys but most guys are like that. My beautiful baby girl has some development problems we are trying to help her with. She is currently on steroids and a bunch of other meds. She is only on her oxygen at night starting this week. It's nice to see more of her beautiful face. She takes baby food now which is awesome. She won't drink a bottle, it's not going to happen for her again it just won't and thats ok. I dedicated so much effort and time to get her to drink her bottle. It was a horrible task... but I am stubborn and I got her to drink her bottle. I feel like a feeding expert now, I think I could feed any baby a bottle now. Lucy still would be taking a bottle now if it wasn't for the seizures. But, that is life and life can suck. For the most part life has been good for me and my family. I know some people have said I wouldn't change my child. Nothing is wrong with your child or my child that has special needs. But, they are wrong. Our children do have something wrong with them, it's life and I would change my child if I had the choice. To want your child to be healthy is not selfish or wrong, we don't want our children to suffer. I don't care about myself, I just worry about a child hurting. The child I carried for 9 months and didn't know if she would make it to birth. This child who is tougher than you could ever imagine all 10 lbs of her. She is such a strong fighter, and that is why I am here to be an advocate to help her. She does have something wrong with her, I know this and that is why we have many doctors and programs to help children like her. Denial is hard for parents that hear that they have a child that has special needs.
My daughter Lucinda Jane has an extremely rare chromosome abnormality that doesn't have a name. She has a disability and is a special needs child. She needs to be fed through a tube to live and on a low flow of oxygen. She has Infantile Spasms with hypsorrythmia. Hypsorrythmia can lead to something horrible if not fixed. She is on Prednisolone to help stop them. She acts like a newborn and cannot lift her head. She cannot track objects very well because of the hypsorrythmia. She has up to 10 appointments a month with doctors or a specialist of some sort. Now, if I were to ignore what Lucy has she would not get help that she needs. She may lead a good life one day because we took action. Because, I acknowledge she does need help. That is why we have these hospitals, we want to help our child's problems so they can thrive. I hope this makes sense to everyone, but this is how I see it. I love my baby girl, and I want her here and I want to help her the best I can. I do not want her to suffer, she is fighting so hard to be here so I need to fight back and say "Oh no you didn't" :). This is my life, I am so grateful she is here now that is what I wouldn't change. I just want to help her be happy and smile again, that is a goal worth striving for. Because, she gave the best smiles. I love my son, who I will just hug and hug because I am so grateful for him. I love that little guy so much, he has my heart in his hands. He is a beautiful little boy who will have the girls chasing him one day. I love my children and am so grateful they are here. I love them with all my heart. Being a parent is such a blessing, and I am so greatful I am one.
Lucy had all these tests run on here to see why she was born so small. The Placenta was small and her umbilical cord was smaller than the width of a pencil. She has the smallest belly button ever, I challenge anyone to show me a smaller belly button haha. Her tests were coming out good until one day the nurses say they had gotten some results and to talk to the Neonatologist. So, I get on the phone and Dr. Burgar tells me that she tested positive for a chromsome abnormality. I was so confused, and had so many emotions running. They were going to do a more extensive test called a Micro Array Essay to see exactly what it was. Almost 2 long weeks go by and then another one of the Neo's comes up to me and says they got the results. He takes a look at it and says really loud "Oh My Gosh I need my glasses". Me and my Mom are pretty much horrified as we watch him run out to get his glasses. He sits us down and says well I'm telling you something you already know. And I'm thinking I have no clue what is going on. So, I ask him and he really doesn't know. He is an interesting fellow, I like him but don't like him. I was so confused... I had to wait to see a Geneticist. I spent many days just having a smile on my face, and then I would run away somewhere and cry out of nowhere. It wasn't very often, but I had my moments. When we saw the Geneticist it was after the seizures started, those crappy seizures. Those seizures I invision in my head when I punch the crap out of the bag in Kick boxing class. She was doing pretty well and then those started and the crap hit the fan. Ah.. that is when I started to really lose it and just cry and cry and Lucas would just reassure me. Me and him have had to reassure each other through these tough times. Lucas doesn't like to talk about it, it's a guy thing. Guy's cope differently than girls, girls just pour out emotions. Guys say like two words and walk away haha. Not all guys but most guys are like that. My beautiful baby girl has some development problems we are trying to help her with. She is currently on steroids and a bunch of other meds. She is only on her oxygen at night starting this week. It's nice to see more of her beautiful face. She takes baby food now which is awesome. She won't drink a bottle, it's not going to happen for her again it just won't and thats ok. I dedicated so much effort and time to get her to drink her bottle. It was a horrible task... but I am stubborn and I got her to drink her bottle. I feel like a feeding expert now, I think I could feed any baby a bottle now. Lucy still would be taking a bottle now if it wasn't for the seizures. But, that is life and life can suck. For the most part life has been good for me and my family. I know some people have said I wouldn't change my child. Nothing is wrong with your child or my child that has special needs. But, they are wrong. Our children do have something wrong with them, it's life and I would change my child if I had the choice. To want your child to be healthy is not selfish or wrong, we don't want our children to suffer. I don't care about myself, I just worry about a child hurting. The child I carried for 9 months and didn't know if she would make it to birth. This child who is tougher than you could ever imagine all 10 lbs of her. She is such a strong fighter, and that is why I am here to be an advocate to help her. She does have something wrong with her, I know this and that is why we have many doctors and programs to help children like her. Denial is hard for parents that hear that they have a child that has special needs.
My daughter Lucinda Jane has an extremely rare chromosome abnormality that doesn't have a name. She has a disability and is a special needs child. She needs to be fed through a tube to live and on a low flow of oxygen. She has Infantile Spasms with hypsorrythmia. Hypsorrythmia can lead to something horrible if not fixed. She is on Prednisolone to help stop them. She acts like a newborn and cannot lift her head. She cannot track objects very well because of the hypsorrythmia. She has up to 10 appointments a month with doctors or a specialist of some sort. Now, if I were to ignore what Lucy has she would not get help that she needs. She may lead a good life one day because we took action. Because, I acknowledge she does need help. That is why we have these hospitals, we want to help our child's problems so they can thrive. I hope this makes sense to everyone, but this is how I see it. I love my baby girl, and I want her here and I want to help her the best I can. I do not want her to suffer, she is fighting so hard to be here so I need to fight back and say "Oh no you didn't" :). This is my life, I am so grateful she is here now that is what I wouldn't change. I just want to help her be happy and smile again, that is a goal worth striving for. Because, she gave the best smiles. I love my son, who I will just hug and hug because I am so grateful for him. I love that little guy so much, he has my heart in his hands. He is a beautiful little boy who will have the girls chasing him one day. I love my children and am so grateful they are here. I love them with all my heart. Being a parent is such a blessing, and I am so greatful I am one.
