Hello all! this is my about me page, and i know it is pretty long, but
it's here if you want to know all about me!
My name is Erika, I live in Indiana, I have been married to Christopher for almost 9 years, and we have a 2 YEAR old daughter Abby. At this point in time we are living with my mother, and that probably won't ever change. We have 2 beautiful Yorkshire Terriers, Maya AND Dakota. We also have a cat named Scotchie, who is not really very nice, but she's ours LOL. i have a bachelor's degree from indiana university in english literature (yeah, I know, I always get the groans when i tell people that) LOL. i was one spanish class and a thesis away from having my master's, but i quit because i was never going to be able to teach college lit like i wanted, unless i went back for more time to get a phd. no thank you!!! my school bills are already high enough as it is LOL. anyhoo, i love computers and working with the web, i actually received an advanced certificate in web design last year, but haven't used it much yet LOL!!!
last year i became a stay-at-home mom because I was working for a small office that designed insurance forms, and they downsized us, I had an extended family of about 35 people that I miss immensely! But usually everything happens for a reason, and now I see why I lost my job.
I had a c-section with my daughter in November 2006 because I had gestational diabetes. Type 2 is in my family, so I pretty much was a sitting duck for that. I kept it under control with the pills, and Abby was only 6 lbs. 7 1/2 oz. when she was born. We thought everything was fine, but less than 24 hours later she wouldn't take her formula and her blood sugar dropped dangerously low - to 51. She was put into the PICU and monitored, she had a lot of trouble learning how to suck on the bottle. Let me tell you, feeding that child was absolutely torturous for the next 6 months. When we went home from the hospital 4 days later, we had no clue how much our lives would change. Abby had one of the most severe cases of colic the doctors had ever seen, she cried on average 15 hours a day, and only slept about 6, and only for about 45 minutes at a time. We tried every different formula, bottle, doctor, but nothing worked for the poor child. We took her to a pediatric gastroenterologist and he heard a heart murmur. Of course everyone told us that it was normal, and there was most likely nothing wrong, but we took her to a cardiologist anyways. After the exam and the echo were taken, it was sent to Indianapolis for the cardiologist to review. On February 21, 2006 the doctor called and my world collapsed. Abby had coarctation, which is when the aorta is narrowed for some reason, and she needed surgery asap or she could die.
on February 27 at 2 1/2 months old Abby went in for heart surgery. Luckily for us and her, it was something they could fix by going in through her back, it wasn't open heart surgery. She spent 8 days in the NICU at St. Vincent's Hospital in Indianapolis, until finally coming home in early March 2006. We were hoping that the surgery would help her colic, but it didn't, and she suffered with the colic until she was 6 months old. Which was strange, because most colic ends by 3 months. So now we were blaming ourselves, wondering what we did that caused her heart problems. At the time of her 6 month cardio checkup the doctor told us that she had a very small aorta, and he was a little concerned that it would not grow and she may have to have a complete aortic replacement as an adult. So yet something else to worry about :( He then told us that we should possibly consider seeing a geneticist, because there are certain genetic syndromes that go with this type of heart problem. We didn't worry too much about it, because we didn't want to believe she had anything wrong.
at her pediatric appointment in august 2008 her family doctor told us the same thing, that she wanted to make sure Abby didn't have anything wrong. This time we listened, because we had been doing some research and "just in case" we made an appointment at Riley's. So we go into the office and as we are walking down the hallway to the exam room the genetics doctor takes a look at Abby and says "She has Williams Syndrome". The other doctor agreed, and because WS was one of the syndromes we had researched, we were considerably upset. WS occurs when a piece of Chromosome #7 is broken off, it can be mild to severe in range, and can cause mental retardation, LEARNING DISABILITIES, AND CAN RUN THE GAMUT WITH HEALTH PROBLEMS. It also can cause kidney, thyroid, and high calcium --- as well as the extended colic, coarctation, and feeding problems. Abby fit the bill perfectly, there was pretty much no doubt in our minds when we left that the FISH-test would come back positive. Sure enough, 7 days later we learned she definitely had WS. But in some ways we are now relieved, because at least we know what to expect, and it explains all the strange things that we couldn't understand before.
Abby will have an uphill battle her entire life, most people with WS cannot live on their own because they are too trusting and can't deal with certain things, and there is a very good chance that Abby may not ever be able to have children. If she does, there is a 50% chance of passing WS on to the children. This syndrome is not widely known, and most schools are not equipped to deal with WS children. Severe learning disabilities and distinctive facial characteristics also accompany this syndrome. they also have thyroid, kidney and various other health problems to deal with - most of the time the heart problem is the worst, and we fixed that early!! (Update 04/09 -- abby has gone for her cardio scans and the doctor said she is doing excellent!!! he won't need to see her again for over a year, and she no longer needs antibiotics before dental procedures :) We are so thrilled!
The wonderful part of all this is that children with WS are very happy, sweet and outgoing, love people and are normally not scared of much, and they usually sing beautifully and have great musical acuity. So music therapy and phonics are great ways for them to learn. The downside is that because they are so trusting, they don't know a stranger, and can be taken advantage of very easily. They also sometimes have more problems as a teenager such as depression and anxiety, so it can be difficult while they are in high school - kids just don't understand. But even with all the bad stuff, Abby is a joy to be around, and everyone just comments on her when we go places - she has this magnetic personality and beautiful blue eyes and tons of blond hair, so she makes quite an impression. Don't know where she got the beauty from, because it DEFINITELY wasn't me LOL. For now, Abby is healthy, with no other problems, we just have to keep checking her for kidney and thyroid and calcium levels pretty often. She is our little angel!
I was finally tested for WS and it came back negative! So now just my hubby has to be tested, I hope to have a page up soon for information and resources on Williams Syndrome as well!
above - Abby at 16 months (april 2008)
OUR LITTLE ANGEL EMMY HAD TO BE PUT TO SLEEP IN JUNE 2009, SHE WAS GETTING WORSE AND SHE HAD GONE COMPLETELY LAME. iT WAS TERRIBLE, BUT I COULDN'T LET HER GO ON LIKE THAT :( WE WILL ALWAYS REMEMBER HER SWEETNESS AND THE JOY SHE BROUGHT US FOR THE FEW SHORT MONTHS SHE WAS HERE!!!
My name is Erika, I live in Indiana, I have been married to Christopher for almost 9 years, and we have a 2 YEAR old daughter Abby. At this point in time we are living with my mother, and that probably won't ever change. We have 2 beautiful Yorkshire Terriers, Maya AND Dakota. We also have a cat named Scotchie, who is not really very nice, but she's ours LOL. i have a bachelor's degree from indiana university in english literature (yeah, I know, I always get the groans when i tell people that) LOL. i was one spanish class and a thesis away from having my master's, but i quit because i was never going to be able to teach college lit like i wanted, unless i went back for more time to get a phd. no thank you!!! my school bills are already high enough as it is LOL. anyhoo, i love computers and working with the web, i actually received an advanced certificate in web design last year, but haven't used it much yet LOL!!!
last year i became a stay-at-home mom because I was working for a small office that designed insurance forms, and they downsized us, I had an extended family of about 35 people that I miss immensely! But usually everything happens for a reason, and now I see why I lost my job.
I had a c-section with my daughter in November 2006 because I had gestational diabetes. Type 2 is in my family, so I pretty much was a sitting duck for that. I kept it under control with the pills, and Abby was only 6 lbs. 7 1/2 oz. when she was born. We thought everything was fine, but less than 24 hours later she wouldn't take her formula and her blood sugar dropped dangerously low - to 51. She was put into the PICU and monitored, she had a lot of trouble learning how to suck on the bottle. Let me tell you, feeding that child was absolutely torturous for the next 6 months. When we went home from the hospital 4 days later, we had no clue how much our lives would change. Abby had one of the most severe cases of colic the doctors had ever seen, she cried on average 15 hours a day, and only slept about 6, and only for about 45 minutes at a time. We tried every different formula, bottle, doctor, but nothing worked for the poor child. We took her to a pediatric gastroenterologist and he heard a heart murmur. Of course everyone told us that it was normal, and there was most likely nothing wrong, but we took her to a cardiologist anyways. After the exam and the echo were taken, it was sent to Indianapolis for the cardiologist to review. On February 21, 2006 the doctor called and my world collapsed. Abby had coarctation, which is when the aorta is narrowed for some reason, and she needed surgery asap or she could die.
on February 27 at 2 1/2 months old Abby went in for heart surgery. Luckily for us and her, it was something they could fix by going in through her back, it wasn't open heart surgery. She spent 8 days in the NICU at St. Vincent's Hospital in Indianapolis, until finally coming home in early March 2006. We were hoping that the surgery would help her colic, but it didn't, and she suffered with the colic until she was 6 months old. Which was strange, because most colic ends by 3 months. So now we were blaming ourselves, wondering what we did that caused her heart problems. At the time of her 6 month cardio checkup the doctor told us that she had a very small aorta, and he was a little concerned that it would not grow and she may have to have a complete aortic replacement as an adult. So yet something else to worry about :( He then told us that we should possibly consider seeing a geneticist, because there are certain genetic syndromes that go with this type of heart problem. We didn't worry too much about it, because we didn't want to believe she had anything wrong.
at her pediatric appointment in august 2008 her family doctor told us the same thing, that she wanted to make sure Abby didn't have anything wrong. This time we listened, because we had been doing some research and "just in case" we made an appointment at Riley's. So we go into the office and as we are walking down the hallway to the exam room the genetics doctor takes a look at Abby and says "She has Williams Syndrome". The other doctor agreed, and because WS was one of the syndromes we had researched, we were considerably upset. WS occurs when a piece of Chromosome #7 is broken off, it can be mild to severe in range, and can cause mental retardation, LEARNING DISABILITIES, AND CAN RUN THE GAMUT WITH HEALTH PROBLEMS. It also can cause kidney, thyroid, and high calcium --- as well as the extended colic, coarctation, and feeding problems. Abby fit the bill perfectly, there was pretty much no doubt in our minds when we left that the FISH-test would come back positive. Sure enough, 7 days later we learned she definitely had WS. But in some ways we are now relieved, because at least we know what to expect, and it explains all the strange things that we couldn't understand before.
Abby will have an uphill battle her entire life, most people with WS cannot live on their own because they are too trusting and can't deal with certain things, and there is a very good chance that Abby may not ever be able to have children. If she does, there is a 50% chance of passing WS on to the children. This syndrome is not widely known, and most schools are not equipped to deal with WS children. Severe learning disabilities and distinctive facial characteristics also accompany this syndrome. they also have thyroid, kidney and various other health problems to deal with - most of the time the heart problem is the worst, and we fixed that early!! (Update 04/09 -- abby has gone for her cardio scans and the doctor said she is doing excellent!!! he won't need to see her again for over a year, and she no longer needs antibiotics before dental procedures :) We are so thrilled!
The wonderful part of all this is that children with WS are very happy, sweet and outgoing, love people and are normally not scared of much, and they usually sing beautifully and have great musical acuity. So music therapy and phonics are great ways for them to learn. The downside is that because they are so trusting, they don't know a stranger, and can be taken advantage of very easily. They also sometimes have more problems as a teenager such as depression and anxiety, so it can be difficult while they are in high school - kids just don't understand. But even with all the bad stuff, Abby is a joy to be around, and everyone just comments on her when we go places - she has this magnetic personality and beautiful blue eyes and tons of blond hair, so she makes quite an impression. Don't know where she got the beauty from, because it DEFINITELY wasn't me LOL. For now, Abby is healthy, with no other problems, we just have to keep checking her for kidney and thyroid and calcium levels pretty often. She is our little angel!
I was finally tested for WS and it came back negative! So now just my hubby has to be tested, I hope to have a page up soon for information and resources on Williams Syndrome as well!
above - Abby at 16 months (april 2008)
And these are our FURBABIES (maya, dakota and our cat scotchie!
OUR LITTLE ANGEL EMMY HAD TO BE PUT TO SLEEP IN JUNE 2009, SHE WAS GETTING WORSE AND SHE HAD GONE COMPLETELY LAME. iT WAS TERRIBLE, BUT I COULDN'T LET HER GO ON LIKE THAT :( WE WILL ALWAYS REMEMBER HER SWEETNESS AND THE JOY SHE BROUGHT US FOR THE FEW SHORT MONTHS SHE WAS HERE!!!