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Wednesday, December 28, 2011
Tuesday, December 13, 2011
What is Zellweger Syndrome...
What is Zellweger Syndrome (ZS) and what it means for our family....Ok people put on your thinking caps and try to follow along..:)
Zellweger syndrome is the severe form of a peroxisome biogenesis disorder(there are two other disorders that fall under peroxisome biogenesis disorder, Zellweger being the most severe) Peroxisome biogenesis disorders are a group of conditions in which the process of making peroxisomes (specialized structures in the cell responsible for a variety of metabolic processes) does not work properly. The signs and symptoms of Zellweger syndrome typically appear during the newborn period and include poor muscle tone (hypotonia), poor feeding, seizures, cysts in the liver, affected liver functioning, and characteristic facial features. The prognosis for Zellweger syndrome is usually poor, with most children passing during the first year of life.
Peroxisomes are cell structures that break down toxic substances and synthesize lipids (fatty acids. oils, and waxes) that are necessary for cell function. Peroxisomes are required for normal brain development and function and the formation of myelin, the whitish substance that coats nerve fibers. Babies born with ZS do not have proper functioning peroxisomes and aren't able to break down fatty acids.
So I had a very hard time understanding what ZS was, it wasn't until after Corinne's passing I fully understood it. The diease is very rare, only 2-3 doctors/nurses that met Corinne had ever had a patient with ZS... Maybe the above paragraph made since to everyone else but it took me weeks to fully understand it.. So here is my layman's terms..
ZS is a disorder that effects peroxisomes in our body, that we must have for normal cell function and development (everything in our body is made of a cell).. i.e. most ZS babies do not have fully developed brains and do not have healthy functioning organs. Most of them have liver failure (which Corinne did not have) and mild heart issues(which Corinne had severe heart conditions). Most babies to not have a suck reflex so they are not able to bottle feed and have feeding tubes. Because of these peroxisome disorder their muscles do not form like they should and they have limp limbs (hypotonia). Most ZS babies have daily seizures with increase and severity in their final weeks/days of life. Corinne only had a few the first few weeks of life but had 20-30 a day in her last week. Most babies are not able to breath without assistance whether it is a nasal tube that provides a flow of oxygen or are put a ventilator that does all the breathing for them (Corinne was put on a vent at 10 days old) Most children pass from respiratory distress because they become to weak to breath on their own and their brain simply forgets to tell them to breath. Corinne's vent kept her alive those last 19 days of life, it was her life support.
Zellweger's is a genetic recessive disorder- meaning Ryan and I both carried the recessive gene and passed them both onto Corinne making it a dominate gene in her. We have a 1 in 4 chance of having a child with Zellweger's and our children born without Zellweger's (Evan) have a 66% chance of carrying the gene as well (ie.. Evan could have a child with Zellweger's).
What this means for Ryan, I, and our future children.. Ryan and I will not be able to have children naturally. IVF (in vetro vertilization) will be extremely expensive (way beyond the usual price tag of around $12,000 a round)because we will also need to have pre genetic testing/diagnosis (PGD) done on our embryos to "weed" out those that have ZS. The first baby born without ZS using IVF and PGD was in 2007. Our other options is to use a egg or sperm donor so biologically one of us would not be the babies genetic parent. Adoption is and has always been high on our list, but again very expensive and so emotionally taxing.
The grief we have from loosing Corinne far out ways the grief we have for not being able to have our own biological children the natural way but it does add a new loss to our life. I know people have a hard time understanding that. IVF and adoption are so common now a days that people just think " oh they can have another baby, thats easy" but its not. My heart feels for all families out there that have gone thru the IVF and adoption process they know its not "easy".
Many people ask why we didn't know Corinne had ZS while I was pregnant or is their any testing they could of done to find out. Basically the answer is NO.. If we knew that Ryan and I carried this gene they could of done an amnio around 20 weeks to determine if Corinne had it but ZS is rare and there were no reasons for us to think that we had it. Regular amnio test are done for very common genetic or trisomy disorders. But even if we did know there would of been nothing they could do for her, we would of just of had the added heartbreak of carrying a unborn baby knowing she would not live.
Here are some facts on ZS
-There is a less then 1% (.65%) chance you carry the Zellweger gene
-There is a .0078% chance you meet someone that carries the gene and have children
-80 babies a year die from Zellwegner's in the US; 2,6000 in the world; that equals 1 in 50,000 babies are born a year with ZS.
-if two parents have the recessive ZS gene (as Ryan and I do) they have a -25% chance of having a child born with the dominant gene ( ie a child born with ZS)- they have a 25% chance of not passing the recessive ZS gene on at all- and a 50% chance just one parent passes the recessive gene onto their child ( ie child does not have the dominant ZS gene but the recessive and could continue to pass it on to future generations)
Zellweger syndrome is the severe form of a peroxisome biogenesis disorder(there are two other disorders that fall under peroxisome biogenesis disorder, Zellweger being the most severe) Peroxisome biogenesis disorders are a group of conditions in which the process of making peroxisomes (specialized structures in the cell responsible for a variety of metabolic processes) does not work properly. The signs and symptoms of Zellweger syndrome typically appear during the newborn period and include poor muscle tone (hypotonia), poor feeding, seizures, cysts in the liver, affected liver functioning, and characteristic facial features. The prognosis for Zellweger syndrome is usually poor, with most children passing during the first year of life.
Peroxisomes are cell structures that break down toxic substances and synthesize lipids (fatty acids. oils, and waxes) that are necessary for cell function. Peroxisomes are required for normal brain development and function and the formation of myelin, the whitish substance that coats nerve fibers. Babies born with ZS do not have proper functioning peroxisomes and aren't able to break down fatty acids.
So I had a very hard time understanding what ZS was, it wasn't until after Corinne's passing I fully understood it. The diease is very rare, only 2-3 doctors/nurses that met Corinne had ever had a patient with ZS... Maybe the above paragraph made since to everyone else but it took me weeks to fully understand it.. So here is my layman's terms..
ZS is a disorder that effects peroxisomes in our body, that we must have for normal cell function and development (everything in our body is made of a cell).. i.e. most ZS babies do not have fully developed brains and do not have healthy functioning organs. Most of them have liver failure (which Corinne did not have) and mild heart issues(which Corinne had severe heart conditions). Most babies to not have a suck reflex so they are not able to bottle feed and have feeding tubes. Because of these peroxisome disorder their muscles do not form like they should and they have limp limbs (hypotonia). Most ZS babies have daily seizures with increase and severity in their final weeks/days of life. Corinne only had a few the first few weeks of life but had 20-30 a day in her last week. Most babies are not able to breath without assistance whether it is a nasal tube that provides a flow of oxygen or are put a ventilator that does all the breathing for them (Corinne was put on a vent at 10 days old) Most children pass from respiratory distress because they become to weak to breath on their own and their brain simply forgets to tell them to breath. Corinne's vent kept her alive those last 19 days of life, it was her life support.
Zellweger's is a genetic recessive disorder- meaning Ryan and I both carried the recessive gene and passed them both onto Corinne making it a dominate gene in her. We have a 1 in 4 chance of having a child with Zellweger's and our children born without Zellweger's (Evan) have a 66% chance of carrying the gene as well (ie.. Evan could have a child with Zellweger's).
What this means for Ryan, I, and our future children.. Ryan and I will not be able to have children naturally. IVF (in vetro vertilization) will be extremely expensive (way beyond the usual price tag of around $12,000 a round)because we will also need to have pre genetic testing/diagnosis (PGD) done on our embryos to "weed" out those that have ZS. The first baby born without ZS using IVF and PGD was in 2007. Our other options is to use a egg or sperm donor so biologically one of us would not be the babies genetic parent. Adoption is and has always been high on our list, but again very expensive and so emotionally taxing.
The grief we have from loosing Corinne far out ways the grief we have for not being able to have our own biological children the natural way but it does add a new loss to our life. I know people have a hard time understanding that. IVF and adoption are so common now a days that people just think " oh they can have another baby, thats easy" but its not. My heart feels for all families out there that have gone thru the IVF and adoption process they know its not "easy".
Many people ask why we didn't know Corinne had ZS while I was pregnant or is their any testing they could of done to find out. Basically the answer is NO.. If we knew that Ryan and I carried this gene they could of done an amnio around 20 weeks to determine if Corinne had it but ZS is rare and there were no reasons for us to think that we had it. Regular amnio test are done for very common genetic or trisomy disorders. But even if we did know there would of been nothing they could do for her, we would of just of had the added heartbreak of carrying a unborn baby knowing she would not live.
Here are some facts on ZS
-There is a less then 1% (.65%) chance you carry the Zellweger gene
-There is a .0078% chance you meet someone that carries the gene and have children
-80 babies a year die from Zellwegner's in the US; 2,6000 in the world; that equals 1 in 50,000 babies are born a year with ZS.
-if two parents have the recessive ZS gene (as Ryan and I do) they have a -25% chance of having a child born with the dominant gene ( ie a child born with ZS)- they have a 25% chance of not passing the recessive ZS gene on at all- and a 50% chance just one parent passes the recessive gene onto their child ( ie child does not have the dominant ZS gene but the recessive and could continue to pass it on to future generations)
Monday, December 12, 2011
Again I am touched
The below blog is written by a women, Leah Martin, who worked at and some times lead Evan's Gymboree class while I was pregnant with Corinne. She was also pregnant right before I was with her daughter being a few months older then Corinne. She wrote this blog back in August about our sweet Corinne. And tonight she felt the urge to share it with me.. It couldn't have come at a better time and as we are mourning Corinne's 5 month birthday.
WEDNESDAY, AUGUST 17, 2011
Blessed.
When I was in the 4th grade my friend Brandy had a baby sister who died from complications of a hole in her heart. I remember when it happened because we were actually at a Jump Rope for Heart rally at my school {you remember those, right? You raised money and got super cool prizes crap based on how much money you raised?!} and Brandy was jumping rope in the same area of the gym I was. I don't remember all the details, but I do remember Brandy telling me her mom was holding her baby sister when she died. Being around 9 at the time I had no concept of what that meant, but as I sit here 17 years later with tears streaming down my face my heart aches for Brandy's mom as I can only imagine her pain is still as real today as it was back then.
I moved a year or so later and have no idea what Brandy is up to these days. I honestly cannot even remember her last name, but was reminded of her and her sweet baby sister this past Saturday as the Moll family {a family I know through Gymboree} said goodbye to their daughter Corinne. She went to be with Jesus on August 10 - just 2 days before she would have been a month old. My heart aches for Emily as much as it does for Brandy's mom.
As I tucked Campbell in Saturday night I sobbed as I prayed for Emily. I prayed for God to give her a peace only He can provide. I prayed that her soul would rest in the fact that He is good and would carry her through this. I also thanked God for my healthy, happy 10 month old baby girl. It was at that moment I realized that she is not mine, but precious a gift God has entrusted to me. One He can take back at any time. I knew I was blessed, or at least I thought I knew, but in the stillness of that night I felt the presence of the Lord like I haven't felt in a long time. I had gotten to a place where I felt like Campbell was more of a burden than a blessing. Do not misunderstand what I am saying there. I am head over heals in love with my daughter, but I am sinful and selfish and if her schedule and/or needs did not fit into the perfect mold I had created I would often feel put out. I am not proud to say I felt that way, but am being honest to show that God is so much bigger than my weakness. It is a learning process and takes me surrendering daily, sometimes hourly, but the Lord is completely changing my heart. That moment completely shifted my focus and I believe I will be a better mother for it.
I have no idea why God chose to take Corinne so soon, but her short little life significantly changed mine. Join me in praying for the Moll family as they figure out life without their sweet girl.
To read here blog go to http://ohthemartins.blogspot.com/2011/08/blessed.html
WEDNESDAY, AUGUST 17, 2011
Blessed.
When I was in the 4th grade my friend Brandy had a baby sister who died from complications of a hole in her heart. I remember when it happened because we were actually at a Jump Rope for Heart rally at my school {you remember those, right? You raised money and got super cool prizes crap based on how much money you raised?!} and Brandy was jumping rope in the same area of the gym I was. I don't remember all the details, but I do remember Brandy telling me her mom was holding her baby sister when she died. Being around 9 at the time I had no concept of what that meant, but as I sit here 17 years later with tears streaming down my face my heart aches for Brandy's mom as I can only imagine her pain is still as real today as it was back then.
I moved a year or so later and have no idea what Brandy is up to these days. I honestly cannot even remember her last name, but was reminded of her and her sweet baby sister this past Saturday as the Moll family {a family I know through Gymboree} said goodbye to their daughter Corinne. She went to be with Jesus on August 10 - just 2 days before she would have been a month old. My heart aches for Emily as much as it does for Brandy's mom.
As I tucked Campbell in Saturday night I sobbed as I prayed for Emily. I prayed for God to give her a peace only He can provide. I prayed that her soul would rest in the fact that He is good and would carry her through this. I also thanked God for my healthy, happy 10 month old baby girl. It was at that moment I realized that she is not mine, but precious a gift God has entrusted to me. One He can take back at any time. I knew I was blessed, or at least I thought I knew, but in the stillness of that night I felt the presence of the Lord like I haven't felt in a long time. I had gotten to a place where I felt like Campbell was more of a burden than a blessing. Do not misunderstand what I am saying there. I am head over heals in love with my daughter, but I am sinful and selfish and if her schedule and/or needs did not fit into the perfect mold I had created I would often feel put out. I am not proud to say I felt that way, but am being honest to show that God is so much bigger than my weakness. It is a learning process and takes me surrendering daily, sometimes hourly, but the Lord is completely changing my heart. That moment completely shifted my focus and I believe I will be a better mother for it.
I have no idea why God chose to take Corinne so soon, but her short little life significantly changed mine. Join me in praying for the Moll family as they figure out life without their sweet girl.
To read here blog go to http://ohthemartins.blogspot.com/2011/08/blessed.html
Corinne in my belly
I know these pictures are probably a little personal, but hey they are all I got:) These are the pictures we took while I was pregnant with Corinne!!
6 weeks pregnant
11 weeks
16 weeks
21 weeks
24 weeks.. man I wore a lot of elastic waste band pants!
28 weeks
still 28 weeks :)
31 weeks
35 weeks
38 weeks
Ok folks I am putting it out there.. no that is not a beached whale but me 38 weeks pregnant trying to find some relief from the heat in Evan's swimming pool :)
38 weeks
39weeks.. Corinne was born less then 7 hours after this picture was taken
16 weeks
21 weeks
24 weeks.. man I wore a lot of elastic waste band pants!
28 weeks
31 weeks
35 weeks
38 weeks
Ok folks I am putting it out there.. no that is not a beached whale but me 38 weeks pregnant trying to find some relief from the heat in Evan's swimming pool :)
38 weeks
39weeks.. Corinne was born less then 7 hours after this picture was taken
Corinne's 5 month birthday- Evan missing his little sis
Corinne would of been 5 months old today. Its all so bitter sweet. Mostly feeling the bitter right now. We miss her so much!!! What has really been breaking my heart lately is how Evan thinks and talks of Corinne often. I some times forget that he lost out on having a little sister too.
Today Evan asked me if we could get Corinne a Christmas present and take it to her in Heaven! Such a sweet considerate boy. Now his first suggestion on gifts were drums (which is the top thing he ask Santa for, so there does seem to be some self motivation there :)
A few times he has asked me if when Corinne comes home from Heaven and gets all better can he help feed her and play with her like his friend Harrison gets to do with his sister Elliott. I told him that one day we will get to visit Corinne in Heaven but she wont be able to come home, his response was well Heaven is far away but so is Tennessee and Grandpa Bob and Grandma Cheryl get to visit our house.
Most of the time Evan seems to get "it", but it has offered a new level of heartbreak lately when I notice him missing doing the things he thought a big brother would get to do.
Arkansas Children's Hospital had a memorial service for the children that lost their lives this year. We were not able to attend but they sent us the program and an ornament with Corinne's name on it. It broke my heart when I read the program and there were over 60 children listed just in the months of August-October who passed away. One of the names I think I recognized was of the baby boy that was next to Corinne during her time there in the NICU. I didn't realize he was terminal :( He was so adorable I always wanted to go over and kiss his chubby little cheeks.
Happy 5 month birthday baby girl, we love you and miss you soooo much!!
Corinne getting to wear her first outfit!! Her little sister onsie! It was one of the two outfits we had packed when we left to have Corinne in the hosptial
Our Family, December 2011 sitting in front of our angel christmas tree
Today Evan asked me if we could get Corinne a Christmas present and take it to her in Heaven! Such a sweet considerate boy. Now his first suggestion on gifts were drums (which is the top thing he ask Santa for, so there does seem to be some self motivation there :)
A few times he has asked me if when Corinne comes home from Heaven and gets all better can he help feed her and play with her like his friend Harrison gets to do with his sister Elliott. I told him that one day we will get to visit Corinne in Heaven but she wont be able to come home, his response was well Heaven is far away but so is Tennessee and Grandpa Bob and Grandma Cheryl get to visit our house.
Most of the time Evan seems to get "it", but it has offered a new level of heartbreak lately when I notice him missing doing the things he thought a big brother would get to do.
Arkansas Children's Hospital had a memorial service for the children that lost their lives this year. We were not able to attend but they sent us the program and an ornament with Corinne's name on it. It broke my heart when I read the program and there were over 60 children listed just in the months of August-October who passed away. One of the names I think I recognized was of the baby boy that was next to Corinne during her time there in the NICU. I didn't realize he was terminal :( He was so adorable I always wanted to go over and kiss his chubby little cheeks.
Happy 5 month birthday baby girl, we love you and miss you soooo much!!
Corinne getting to wear her first outfit!! Her little sister onsie! It was one of the two outfits we had packed when we left to have Corinne in the hosptial
Tuesday, December 6, 2011
Corinne visits w/Mommy and Ronda Part 2
Most of Corinne's life was spent sleeping with very few seconds of awakeness or movement. These few minutes captured the most alert moment Corinne had had up to this point in her life. She was 2.5 weeks old. This was the first time she truly responded to my voice and moved multiple limbs at at a time. There is even one point you can see her trying to follow my voice ( not sure if its this portion or the video before)
Monday, December 5, 2011
my sunSHINE
Tonight has been a hard night for me. I knew it was going to be, but thought overall I would handle it better...not here writing this. A good friend of mine Sarah lost her mom (Susan Richard) to cancer on Friday. Susan had been fighting this aggressive cancer for almost a year with her friends, family, and always her daughter Sarah by her side. Her veiwing awas tonight and her funeral service tomorrow. There was a lot of talk about how amazing Susan was as a mother and grandmother and it made me reflect on my relationship with Corinne even though it was rather short.
I know its in Gods hands, he is in control, but I also know we have free will. I look back and wondered did I try/fight hard enough for Corinne? I am a realist and when I saw her medical charts I knew realistcially we were not looking at a good outcome. I wish I woulld of hoped for more!, prayed for more!, begged for more!! The idea of Corinne being non responsive in a wheel chair was really hard for me to wrap my mind around. Now I would do anything to have her in that capacity. Just to have her I would do anything! Whether it be 2 weeks, 2 months, 2 years, or a life time. I would do anything to have her here on earth with me. I know this was God's plan but was it because he saw that I was too weak to care for a child with special needs? As I always say "God only gives us as much as we could handle" I have always thought of my self as a strong women who knows how to keep her head up, back lash when needed, and zip it lock it when it most counts. I always said I could handle a child with special needs, but did God not see that in me? I don't blame him or struggle with our relationship at all. I become closer with him every day. I struggle with who I am and I how must continue on with my life. Because I think I will continue to break if I walk into another room and I am just known "as the women who lost her baby" or "I am the person no one cares to ask how we are doing because they are busy in their lives", or the most hurtful "don't say anything at all..because maybe they have forgotten about it". I know Corinne is in the most amazing place in the world and I look forward to the day I get to be with her again. But as a human I can't but help but miss not having her with me, grieving it daily on one level or another.
( I just studied James in my bible study group you would think I would of learned something, but I am just trying to speak my feelings not hurt anyone else's)Im sorry if this is too much for people as always I hesitate what to say so there is no judging or misunderstanding of my thoughts.
But I lost my baby tragically and it devastates me almost daily
I said I wasn't one of those mothers that curled up in a ball when my child died, but I am one of those mothers that cant fake it threw another day of people wanting to pretend Corinne wasn't born so they feel more comfortable. She was our daughter that I carried for 9 months, planned a future with but was only given 29 days full of hospitals, more then 50 doctors and nurses, wires, machines, leads, needles, test results. Corinne was never even a baby but a report. A thick 3 inch medical report that lays in her crib that I read every so often...
I love you Corinne Sophia Moll- My SunSHINE!
I know its in Gods hands, he is in control, but I also know we have free will. I look back and wondered did I try/fight hard enough for Corinne? I am a realist and when I saw her medical charts I knew realistcially we were not looking at a good outcome. I wish I woulld of hoped for more!, prayed for more!, begged for more!! The idea of Corinne being non responsive in a wheel chair was really hard for me to wrap my mind around. Now I would do anything to have her in that capacity. Just to have her I would do anything! Whether it be 2 weeks, 2 months, 2 years, or a life time. I would do anything to have her here on earth with me. I know this was God's plan but was it because he saw that I was too weak to care for a child with special needs? As I always say "God only gives us as much as we could handle" I have always thought of my self as a strong women who knows how to keep her head up, back lash when needed, and zip it lock it when it most counts. I always said I could handle a child with special needs, but did God not see that in me? I don't blame him or struggle with our relationship at all. I become closer with him every day. I struggle with who I am and I how must continue on with my life. Because I think I will continue to break if I walk into another room and I am just known "as the women who lost her baby" or "I am the person no one cares to ask how we are doing because they are busy in their lives", or the most hurtful "don't say anything at all..because maybe they have forgotten about it". I know Corinne is in the most amazing place in the world and I look forward to the day I get to be with her again. But as a human I can't but help but miss not having her with me, grieving it daily on one level or another.
( I just studied James in my bible study group you would think I would of learned something, but I am just trying to speak my feelings not hurt anyone else's)Im sorry if this is too much for people as always I hesitate what to say so there is no judging or misunderstanding of my thoughts.
But I lost my baby tragically and it devastates me almost daily
I said I wasn't one of those mothers that curled up in a ball when my child died, but I am one of those mothers that cant fake it threw another day of people wanting to pretend Corinne wasn't born so they feel more comfortable. She was our daughter that I carried for 9 months, planned a future with but was only given 29 days full of hospitals, more then 50 doctors and nurses, wires, machines, leads, needles, test results. Corinne was never even a baby but a report. A thick 3 inch medical report that lays in her crib that I read every so often...
I love you Corinne Sophia Moll- My SunSHINE!
Thursday, December 1, 2011
How am I?...
"How are you?" is a daily questions I get from friends and family, well it use to be. Its been 4 months most people don't ask anymore.... I use tom come up with a new phrase to sooth them. I struggle with what to say. I am a honest person but I am too sensitive to poeple's opinions at times.. Most days I wake up searching for something that will motivate me to be a happy mother, wife, and person. Most days I fail. And stay like a hermit in my house walking the rooms oblivious as to what is missing. Other days I put my act together and head out and pretend like nothing happened and keep living life. I think I pull those days off relatively well, but who knows.
I didn't know pain existed like this. I physically hurt for Corinne everyday. It however does bring me peace knowing she is in Heaven, the most amazing place ever and I long for the day we can be together!
I know people that lost their children too soon and they say it "was a blessing" and Corinne did bless me, but its very hard to feel blessed when you lost your child. For me Corinne did not have a huge legacy to leave behind.. no cancer awareness, no ad for drunk driving, no genetic disorder that could have game changing medical resources available to them one day. Zellweger will never be cured and mostly will continue to never be heard of. I am okay with that. I don't feel like I was blessed with Corinne to rid the world or educate them on ZS. But I do still search as to what this means for me as a women and mother. Because right now I feel empty and alone.
I didn't know pain existed like this. I physically hurt for Corinne everyday. It however does bring me peace knowing she is in Heaven, the most amazing place ever and I long for the day we can be together!
I know people that lost their children too soon and they say it "was a blessing" and Corinne did bless me, but its very hard to feel blessed when you lost your child. For me Corinne did not have a huge legacy to leave behind.. no cancer awareness, no ad for drunk driving, no genetic disorder that could have game changing medical resources available to them one day. Zellweger will never be cured and mostly will continue to never be heard of. I am okay with that. I don't feel like I was blessed with Corinne to rid the world or educate them on ZS. But I do still search as to what this means for me as a women and mother. Because right now I feel empty and alone.
Wrapping up 2011
The Moll Family 2011
In November of 2010 we found out we were pregnant with our second child! In February of 2011 right before my sisters, Sarah and Rachel, visited Arkansas for one of our annual gatherings I found out it was a girl! I specifically asked the doctor if I could have my ultra sound before their visit so we could enjoy some shopping—anyone who knows us knows the Wegner girls shop when they are together!
In May Ryan, Evan, and I did a 10 day road trip to visit our family and have our last hoorah before our lives would be taken over with sleep deprivation, naps, feedings, and road trips that consisted of screaming children. We stopped outside of St Louis for Ryan’s cousins wedding where we got to see Ryan’s parents, Aunt, Uncle, and cousins. We then headed to Lake Cumberland, Kentucky to visit with my sister Sarah, husband Jason, daughter Elise, and her in-laws on their houseboat. It was suppose to be 5 days of fun in the sun and water, but instead it ended up 5 days in the rain and kiddy pool up top ( this was during the same time the Joplin Tornado hit and so many lives were devastated). As always we made the best of it and enjoyed our time together. After that we headed to Memphis to visit one of Ryan’s best friends and his brother Jerrod and his daughter Meredith for a trip to the zoo and a baseball game. The trip overall was a huge success. Evan did great in the car! I was 7 months pregnant and I did pretty well myself!
On July 12, 2011 at 1:27pm our beautiful blessing of a daughter was born. I had an amazing pregnancy and delivery with no concerns and great medical care. The minute Corinne Sophia Moll was born she was not breathing and her heart was not beating. After several hours in the NICU she was helicoptered 3 hours away to Arkansas Children’s Hospital. After 2 weeks of testing Corinne was diagnosed with Zellwegers syndrome. Zellwegers is a recessive genetic disorder that damages the white matter of the brain and also affects how the body metabolizes particular substances in the blood and organ tissues. Due to these things Corinne had severe brain damage, 2 holes in heart causing excessive heart failure, and her other organs could start failing her at any moment. Zellwegers has an average life expectancy of 6 months but due to Corinne’s severe heart failure and poor brain development our time with her would be much less.
In early August Corinne was back transported to a local hospital (Washington Regional) so she could meet her friends, family and spend some quality time with her big brother Evan. On August 10, 2011 after Corinne’s 29 days to struggle for life Corinne died in our arms.
Corinne has given us the biggest heart break of our lives and been the best blessing. Bitter sweet I know…
In September Evan and I went to Tahoe for a vacation with my sisters and their families. The trip was difficult for me being away from things that reminded me of Corinne, but Tahoe is breathtaking and it was nice to be with family. It also marked the first visit where all the cousins successfully got along! No biting, no hitting, no wrestling moves (Jack), and overall good sharing skills :)
The end of our year has been difficult on so many levels, but our time with Evan becomes more amazing and precious. Evan turned 3 on November 16th and we celebrated with a birthday party to Build-a-Bear! In November Evan also started soccer!
Every day Evan amazes us with his words and actions. Here a few of our favorites..
1-Mommy “Evan Thanksgiving is a time where we say what we are thankful for, what are you thankful for?”
Evan- “My Mommy and Daddy”
2- Mommy sarcastically asks “Evan what planet are you from?”
Evan- “Earth”
3- Mommy “Evan where is Corinne?”
Evan- “Heaven and I will get to go there one day because I told Jesus I love him”
4- Katie (family friend) asks Evan during a middle of a tantrum “Evan what do you want for your birthday?”
Evan instantly dries up the tears and says “a John Deere, a football helmet… (then looks around the room and points to their TV and says..) and that TV.”
Another huge part of our year has been the amazing outreach from our family, friends, and new friends we have meet along the way. Thank you for all of your love and support.
Lastly we have some friends that have dealt with tragedy this year too.
The Woodruff family reached out to me when Corinne was at Children’s. They lost their son Miller in June 2011 to Spinal Muscular Atrophy; he was almost 3 months old. Please check out www.imwithmiller.com to learn more about their story and support their amazing cause.
Another family who has touched our lives is the Tucker’s. They are friends we have had for years and have been a huge support during this time in our lives. This year has been a difficult year for them as well. Jeff lost his stepmother in November 2010 to cancer and his stepfather has recently been diagnosed with throat cancer. Sarah’s mom was also diagnosed with an aggressive Cancer in January of 2011. In support of their family they have started a team to raise money for the American Cancer Society. To learn more please check out their link. www.relayforlife.org/bentoncounty Team Name- Fighting Like Hogs
2011 started off on a higher note and ended on a lower one, but we our thankful for what we do have and thank God every day for the blessings he has given us. Its gives me much peace to know Corinne is in Heaven and there will be a day we are all together!
The Moll Family
Ryan, Emily, Evan, & Corinne
To read more about Corinne’s life please check out her blog at
www.corinnesophia.blogspot.com
In November of 2010 we found out we were pregnant with our second child! In February of 2011 right before my sisters, Sarah and Rachel, visited Arkansas for one of our annual gatherings I found out it was a girl! I specifically asked the doctor if I could have my ultra sound before their visit so we could enjoy some shopping—anyone who knows us knows the Wegner girls shop when they are together!
In May Ryan, Evan, and I did a 10 day road trip to visit our family and have our last hoorah before our lives would be taken over with sleep deprivation, naps, feedings, and road trips that consisted of screaming children. We stopped outside of St Louis for Ryan’s cousins wedding where we got to see Ryan’s parents, Aunt, Uncle, and cousins. We then headed to Lake Cumberland, Kentucky to visit with my sister Sarah, husband Jason, daughter Elise, and her in-laws on their houseboat. It was suppose to be 5 days of fun in the sun and water, but instead it ended up 5 days in the rain and kiddy pool up top ( this was during the same time the Joplin Tornado hit and so many lives were devastated). As always we made the best of it and enjoyed our time together. After that we headed to Memphis to visit one of Ryan’s best friends and his brother Jerrod and his daughter Meredith for a trip to the zoo and a baseball game. The trip overall was a huge success. Evan did great in the car! I was 7 months pregnant and I did pretty well myself!
On July 12, 2011 at 1:27pm our beautiful blessing of a daughter was born. I had an amazing pregnancy and delivery with no concerns and great medical care. The minute Corinne Sophia Moll was born she was not breathing and her heart was not beating. After several hours in the NICU she was helicoptered 3 hours away to Arkansas Children’s Hospital. After 2 weeks of testing Corinne was diagnosed with Zellwegers syndrome. Zellwegers is a recessive genetic disorder that damages the white matter of the brain and also affects how the body metabolizes particular substances in the blood and organ tissues. Due to these things Corinne had severe brain damage, 2 holes in heart causing excessive heart failure, and her other organs could start failing her at any moment. Zellwegers has an average life expectancy of 6 months but due to Corinne’s severe heart failure and poor brain development our time with her would be much less.
In early August Corinne was back transported to a local hospital (Washington Regional) so she could meet her friends, family and spend some quality time with her big brother Evan. On August 10, 2011 after Corinne’s 29 days to struggle for life Corinne died in our arms.
Corinne has given us the biggest heart break of our lives and been the best blessing. Bitter sweet I know…
In September Evan and I went to Tahoe for a vacation with my sisters and their families. The trip was difficult for me being away from things that reminded me of Corinne, but Tahoe is breathtaking and it was nice to be with family. It also marked the first visit where all the cousins successfully got along! No biting, no hitting, no wrestling moves (Jack), and overall good sharing skills :)
The end of our year has been difficult on so many levels, but our time with Evan becomes more amazing and precious. Evan turned 3 on November 16th and we celebrated with a birthday party to Build-a-Bear! In November Evan also started soccer!
Every day Evan amazes us with his words and actions. Here a few of our favorites..
1-Mommy “Evan Thanksgiving is a time where we say what we are thankful for, what are you thankful for?”
Evan- “My Mommy and Daddy”
2- Mommy sarcastically asks “Evan what planet are you from?”
Evan- “Earth”
3- Mommy “Evan where is Corinne?”
Evan- “Heaven and I will get to go there one day because I told Jesus I love him”
4- Katie (family friend) asks Evan during a middle of a tantrum “Evan what do you want for your birthday?”
Evan instantly dries up the tears and says “a John Deere, a football helmet… (then looks around the room and points to their TV and says..) and that TV.”
Another huge part of our year has been the amazing outreach from our family, friends, and new friends we have meet along the way. Thank you for all of your love and support.
Lastly we have some friends that have dealt with tragedy this year too.
The Woodruff family reached out to me when Corinne was at Children’s. They lost their son Miller in June 2011 to Spinal Muscular Atrophy; he was almost 3 months old. Please check out www.imwithmiller.com to learn more about their story and support their amazing cause.
Another family who has touched our lives is the Tucker’s. They are friends we have had for years and have been a huge support during this time in our lives. This year has been a difficult year for them as well. Jeff lost his stepmother in November 2010 to cancer and his stepfather has recently been diagnosed with throat cancer. Sarah’s mom was also diagnosed with an aggressive Cancer in January of 2011. In support of their family they have started a team to raise money for the American Cancer Society. To learn more please check out their link. www.relayforlife.org/bentoncounty Team Name- Fighting Like Hogs
2011 started off on a higher note and ended on a lower one, but we our thankful for what we do have and thank God every day for the blessings he has given us. Its gives me much peace to know Corinne is in Heaven and there will be a day we are all together!
The Moll Family
Ryan, Emily, Evan, & Corinne
To read more about Corinne’s life please check out her blog at
www.corinnesophia.blogspot.com
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