Our journey with Dylon began in February 2008 when I found out I was Pregnant. He is my 3rd child, but my husband’s first so we were very excited. The pregnancy couldn’t have gone any better until August 5th when I went into labor 6 weeks early. I was admitted to the hospital and given medicine to stop my labor. He held in there for another 4 weeks and was born on September 7, 2008. I had a natural birth with no drugs and he was born a healthy happy 6lb 7oz little man.
The first 6 months of his life were rough because he cried A LOT and slept very little!!!! I chose to breastfeed him because I had done so with my other 2, but it seemed like the only time he would calm down and sleep is when he was nursing. To say the least we were exhausted. Around his 6 month checkup I brought up the fact that he wasn’t attempting to crawl and he wasn’t able to sit up. We were told just to wait it out, that he was probably just behind and he would catch up. My gut told me otherwise. We were told the same thing at his 9 month checkup, but by his 1 year checkup we decided to switch pediatricians.
It was obvious to his new doctor that something was wrong, so she ordered genetic testing and a neurology consult. The results were inconclusive with genetics. They knew something was wrong but all of the tests were negative. The neurologist called us to let us know they had found that Dylon had delayedmylination and microcephaly. We were told that this was the reason that he was not progressing the way he should be, but that he would continue to produce mylin. They said he would progress, just slower than normal.
We continued for the next year to do lots of genetic tests to try and figure out what was the cause of his delays, but we had no luck. When he was about 3, his pediatrician suggested that we make an appointment with the neurologist at the Boston Children’s Hospital. We took the 5 hour trip down and came home with no new answers. Then we received a call a few months later to tell us that the number one MRI reader in the country had taken a look at Dylon’s MRI results and had potentially found something. So we made the trip again, this time they tested him specifically for the foxg1 gene and we had our answer. The doctor had told us that he only knew of 30 cases in the United States and the fact that this is such a new finding is why he wasn’t tested sooner. So we came home with the answer that we had waited so long for.
We spent the next few weeks researching this syndrome, asking questions and connecting with all of the other amazing fox families. We have learned to take it one day at a time and have found new ways of doing everyday things. Watching how Dylon has made such progress over the past years and seeing him learn new things everyday makes the hard times easier. Today he is a VERY happy 6 year old little spitfire that is in Kindergarten and loving every minute of it. His sleeping has improved drastically over the past 3 years and we are thankful for that every single day!!!! We continue to push him to do new things and he continues to amaze us with his perseverance over any obstacles placed in his way. Our journey with Dylon began in February 2008 when I found out I was Pregnant. He is my 3rd child, but my husband’s first so we were very excited. The pregnancy couldn’t have gone any better until August 5th when I went into labor 6 weeks early. I was admitted to the hospital and given medicine to stop my labor. He held in there for another 4 weeks and was born on September 7, 2008. I had a natural birth with no drugs and he was born a healthy happy 6lb 7oz little man.
The first 6 months of his life were rough because he cried A LOT and slept very little!!!! I chose to breastfeed him because I had done so with my other 2, but it seemed like the only time he would calm down and sleep is when he was nursing. To say the least we were exhausted. Around his 6 month checkup I brought up the fact that he wasn’t attempting to crawl and he wasn’t able to sit up. We were told just to wait it out, that he was probably just behind and he would catch up. My gut told me otherwise. We were told the same thing at his 9 month checkup, but by his 1 year checkup we decided to switch pediatricians.
It was obvious to his new doctor that something was wrong, so she ordered genetic testing and a neurology consult. The results were inconclusive with genetics. They knew something was wrong but all of the tests were negative. The neurologist called us to let us know they had found that Dylon had delayedmylination and microcephaly. We were told that this was the reason that he was not progressing the way he should be, but that he would continue to produce mylin. They said he would progress, just slower than normal.
We continued for the next year to do lots of genetic tests to try and figure out what was the cause of his delays, but we had no luck. When he was about 3, his pediatrician suggested that we make an appointment with the neurologist at the Boston Children’s Hospital. We took the 5 hour trip down and came home with no new answers. Then we received a call a few months later to tell us that the number one MRI reader in the country had taken a look at Dylon’s MRI results and had potentially found something. So we made the trip again, this time they tested him specifically for the foxg1 gene and we had our answer. The doctor had told us that he only knew of 30 cases in the United States and the fact that this is such a new finding is why he wasn’t tested sooner. So we came home with the answer that we had waited so long for.
We spent the next few weeks researching this syndrome, asking questions and connecting with all of the other amazing fox families. We have learned to take it one day at a time and have found new ways of doing everyday things. Watching how Dylon has made such progress over the past years and seeing him learn new things everyday makes the hard times easier. Today he is a VERY happy 6 year old little spitfire that is in Kindergarten and loving every minute of it. His sleeping has improved drastically over the past 3 years and we are thankful for that every single day!!!! We continue to push him to do new things and he continues to amaze us with his perseverance over any obstacles placed in his way.