Meredith was born on June 13th, 2008 after a normal pregnancy. I had a very pleasant pregnancy and felt really good the whole time. Meredith wasn’t terribly active in my belly, but I could always feel her moving around a little and was never concerned. In my third trimester, the doctors noticed she was measuring small so I was monitored very closely. At 39 weeks, she was still inexplicably small so my doctor felt it was best to induce me in case there was something preventing her from getting the nutrients she needed to grow. She was born 5lb 9oz – tiny – even smaller than they were estimating. We had about 2 minutes of bliss admiring our new miracle and then Meredith stopped breathing. The nurse scooped her up and gave her oxygen. She recovered, but we remained in the NICU for 19 long days while her oxygen levels stabilized. Meredith nursed well and was normal to us. But looking back, there were definitely signs very early on, but being new and first-time parents, we just didn’t know any better. She was very floppy and made very little eye contact. When I held other babies, they would feel rigid and wiry to me. Meredith was my snuggly little sack of potatoes. That wasn’t big on eye contact.
At her 8-week appointment, the doctor pointed out her low muscle tone and head lag and sent us off to a neurologist. This began our 3-year search for what was going on. We went through countless test that never turned up any answers. As Meredith grew and continued to miss milestones, it became more and more clear that something was off, but the tests continued to come back normal. Finally, on August 19th, 2011 we got a positive test result for a mutation on the FOXG1 gene. Meredith had a truncation. I scoured the internet looking for information – anything. I found a (very) small group of people on a website called Circle of Moms where I found a scrap of a trail of a conversation from a mother who had a child with FOXG1. Eventually we made contact and a tiny group of us formed. Over time, we picked up a bit of momentum, found a few other moms, and one of the moms kindly started a Facebook Group. At the beginning, it was startling to me to only be able to find 3 or 4 other moms in the same boat – IN THE WORLD. It is a difficult diagnosis to accept, and at the time, there was nowhere to turn. I was not handed a brochure or pamphlet. There was no specialist to go see, no website to check out and educate myself with, no other parents to connect with. It comforts me to have this group and the International FOXG1 Foundation in place. Now when parents leave that doctors office with a new diagnosis, they have somewhere to go and people to connect with who understand this complicated journey. Leaning on the moms and dads in this group has helped me tremendously with coming to accept Meredith’s diagnosis.
Meredith is Microcephalic, has Partial Agnesis of the Corpus Calossum, Cortical Visual Impairment, low muscle tone and a seizure disorder. Fortunately, her fussy days are pretty much behind her and she is a super-happy kid. Our first year, she cried a LOT. Now, she is generally content, laughs, smiles a lot and loves music, loud sounds and anything that squeaks or beeps. Her eye contact has improved so much and she loves to watch what’s going on around her. She cannot sit independently, walk, or crawl and has very little motor control. She cannot self-feed at all. She eats soft and pureed foods by mouth and we give her liquids from a sippy cup. She gets the full lineup of therapies including PT, OT, Vision and Speech all at school – which she LOVES. Her favorite part of the school day is riding the bus. She has a major sweet tooth and she LOVES flowers, mylar snd shiny things, pom-poms, loud squeaky noises, and music.
She started having seizures at 15 months old and they are moderately controlled with a combo of Dilantin, Lamictal and Onfi. She loves to laugh and she cracks us up every single day. She has quite a personality despite her limited ability to communicate and she’s quite expressive. She’s in a small classroom in a regular public school with 5 other kids that have similar developmental needs. The transition to school was a very good thing for us and she LOVES it there – except the getting up early part! Her sleep used to be very erratic, but has stabilized as her seizures have come under more control and as she’s grown older.
Parenting a child like Meredith has definitely come with its challenges, but over the years, I have come to view this as the greatest honor. I absolutely love being her mom. She has taught me so much and has impacted and changed so many people around her without ever saying a word. She is the happiest person I have ever come across in my time here on this earth, it is amazing.
Meredith was born on June 13th, 2008 after a normal pregnancy. I had a very pleasant pregnancy and felt really good the whole time. Meredith wasn’t terribly active in my belly, but I could always feel her moving around a little and was never concerned. In my third trimester, the doctors noticed she was measuring small so I was monitored very closely. At 39 weeks, she was still inexplicably small so my doctor felt it was best to induce me in case there was something preventing her from getting the nutrients she needed to grow. She was born 5lb 9oz – tiny – even smaller than they were estimating. We had about 2 minutes of bliss admiring our new miracle and then Meredith stopped breathing. The nurse scooped her up and gave her oxygen. She recovered, but we remained in the NICU for 19 long days while her oxygen levels stabilized. Meredith nursed well and was normal to us. But looking back, there were definitely signs very early on, but being new and first-time parents, we just didn’t know any better. She was very floppy and made very little eye contact. When I held other babies, they would feel rigid and wiry to me. Meredith was my snuggly little sack of potatoes. That wasn’t big on eye contact.
At her 8-week appointment, the doctor pointed out her low muscle tone and head lag and sent us off to a neurologist. This began our 3-year search for what was going on. We went through countless test that never turned up any answers. As Meredith grew and continued to miss milestones, it became more and more clear that something was off, but the tests continued to come back normal. Finally, on August 19th, 2011 we got a positive test result for a mutation on the FOXG1 gene. Meredith had a truncation. I scoured the internet looking for information – anything. I found a (very) small group of people on a website called Circle of Moms where I found a scrap of a trail of a conversation from a mother who had a child with FOXG1. Eventually we made contact and a tiny group of us formed. Over time, we picked up a bit of momentum, found a few other moms, and one of the moms kindly started a Facebook Group. At the beginning, it was startling to me to only be able to find 3 or 4 other moms in the same boat – IN THE WORLD. It is a difficult diagnosis to accept, and at the time, there was nowhere to turn. I was not handed a brochure or pamphlet. There was no specialist to go see, no website to check out and educate myself with, no other parents to connect with. It comforts me to have this group and the International FOXG1 Foundation in place. Now when parents leave that doctors office with a new diagnosis, they have somewhere to go and people to connect with who understand this complicated journey. Leaning on the moms and dads in this group has helped me tremendously with coming to accept Meredith’s diagnosis.
Meredith is Microcephalic, has Partial Agnesis of the Corpus Calossum, Cortical Visual Impairment, low muscle tone and a seizure disorder. Fortunately, her fussy days are pretty much behind her and she is a super-happy kid. Our first year, she cried a LOT. Now, she is generally content, laughs, smiles a lot and loves music, loud sounds and anything that squeaks or beeps. Her eye contact has improved so much and she loves to watch what’s going on around her. She cannot sit independently, walk, or crawl and has very little motor control. She cannot self-feed at all. She eats soft and pureed foods by mouth and we give her liquids from a sippy cup. She gets the full lineup of therapies including PT, OT, Vision and Speech all at school – which she LOVES. Her favorite part of the school day is riding the bus. She has a major sweet tooth and she LOVES flowers, mylar snd shiny things, pom-poms, loud squeaky noises, and music.
She started having seizures at 15 months old and they are moderately controlled with a combo of Dilantin, Lamictal and Onfi. She loves to laugh and she cracks us up every single day. She has quite a personality despite her limited ability to communicate and she’s quite expressive. She’s in a small classroom in a regular public school with 5 other kids that have similar developmental needs. The transition to school was a very good thing for us and she LOVES it there – except the getting up early part! Her sleep used to be very erratic, but has stabilized as her seizures have come under more control and as she’s grown older.
Parenting a child like Meredith has definitely come with its challenges, but over the years, I have come to view this as the greatest honor. I absolutely love being her mom. She has taught me so much and has impacted and changed so many people around her without ever saying a word. She is the happiest person I have ever come across in my time here on this earth, it is amazing.