We switched to another specialist. I loved CHOP for Tanner but Tanner had a genetic syndrome. I felt that CHOP was great for him. But C was a "normal" child in CHOP's eyes and I don't think they gave him the attention he needed. The suppositories every Friday worked for a while but were very upsetting to us and C. Eventually he was able to resist them. The new specialist had me administer adult enemas 3 days in a row. He said this would clean him totally out so that he would be able to pass bowel movements easier from then on. That was awful! He hated it. It did clean him out but still held in the stool that the miralax was creating. Enemas became a common occurrence since suppositories no longer worked.
Now C was 4. His anxiety was getting worse and so was his anger. He was becoming physically aggressive to his himself and his siblings. He would hit himself with force over and over again in his head. By age 6 he had said he wanted to kill himself more than once. I caught him punching Tanner in the face and multiple times caught him with sharp kitchen utensils pretending to use them as weapons on his siblings. During this time he was in a little Christian preschool. Everyday that I picked him up the teacher would hold C until last to she make sure I knew all of the problems he had that day. At one point he told all the kids in his class and the teacher that he had a bomb in his backpack and was going to blow up the school. Eventually I just tried not to make eye contact with the teacher. Obviously I knew something was wrong and she knew I was trying to figure it out.
This was getting worse by the day. All this time he was still holding his bowels, was on a high dose of Miralax and getting enemas to poop. I did question Miralax multiple times since the back of bottle says to discontinue use after 7 days. I was assured it completely harmless.
C's behaviors were very alarming. It was time to have him evaluated. In addition to all of his sensory issues he was very smart for his age. His vocabulary was amazing! He loved scientific type things and knew every detail. Dinosaurs, planets, insects, sea creatures and especially sting rays.....he was an expert. When he was first evaluated they tested him for Asperger's syndrome which was on the high functioning end of the autistic spectrum. Because he was so social and could look you in the eye they ruled that out and labeled him ADHD. That's what they label every kid that they don't really know what's going on yet. I was advised to medicate him for the ADHD but declined. So, the summer going in to Kindergarten he received occupational therapy and attended social groups with other children with similar issues and was then transferred into the school system with an IEP.
We were blessed that his kindergarten teacher was very in tune with C. Instead of treating him like "the bad kid" she embraced him and helped him so much. He ended up having her for 2nd and 3rd grade too. She knew his actions were out of his control and she helped so much through the process of getting him what he needed in the classroom. C was still a bit physically aggressive with his siblings (like sticking his foot out to trip them or pulling their hair) but verbal aggression took over. Anything we asked him to do it was a fight. Brushing teeth, taking a bath, getting dressed, going to the bathroom, eating.....you name it. The first time he said "I hate you you" I cried. I thought that was teenage behavior. If we were telling him to do something he was fighting us. Big fights came when we expected him to go into a room or upstairs by himself. It didn't matter if it was broad daylight with all of the lights on. Going to bed was a bigger fight. He always needed an adult in the room to go to sleep and then he would wake up all night long in panics yelling for me. The anxiety was brutal for him and us.
When C was 5 and half years old, in kindergarten and still holding his stool in I decided to look into Miralax. I was horrified when I found this article written by a pharmacist. It was titled "Getting mad or forgetful after taking a laxative? Well, according to the US Food and Drug Administration that’s exactly what certain best-selling laxatives can do to you." You can click this link to read for yourself. here. I took the article to our pediatrician immediately!!!! I was sure they would tell me to discontinue use of it now. No! I was assured it was a totally harmless, natural, over the counter drug. I left that appointment and took him off of it. Guess what? In a little over a month C was going to the bathroom regularly. I couldn't believe it. But now I still had to figure out what to do about the psychological damage he had endured. I got wrap around services for him. By third grade he had a mobile therapist, a behavioral therapist, a psychologist and a TSS (an assistant in the classroom to help him). Between 1st and 3rd grade he was diagnosed with anxiety and then he was put on the autistic spectrum (as asperger's syndrome). By the middle of third grade his therapists were quite sure he did not belong on the autistic spectrum and that he was suffering from a personality disorder. Disorders like bipolar, borderline personality and schizophrenia were being considered. His main therapist who I trusted so very much (she's one of the wisest women in the field) advised me to get a psychiatrist. It was really time to consider medication. He was scaring other kids at school, making threats and getting called to guidance counselor multiple times a week. Right before Christmas of 2015 we finally decided to try medication. This was hard. We had fought medication for nearly 5 years. It has taken months to get the right combination but C seems to be doing much better. He is on a medication for the anxiety, a mood stabilizer and a focus medication. He has admitted to hearing voices, seeing things and not being able to tell what is real and what is pretend. The therapists no longer believe Bipolar is what he has. Borderline personality disorder and schizophrenia are very hard to diagnose in a 9 year old child so they are not even trying. Instead they are treating the symptoms and medicating him accordingly. As C gets older we will eventually have a true diagnosis.
Now that I'm not working a bunch of little jobs and just have one very flexible career with Stella and Dot, I decided it's time to do something about this. I started researching again and came across this article written by Dr. Mercola. In this article I found out that there have been over 7000 reports to the FDA about Miralax and these adverse effects. That's ALOT!!! The FDA has granted The Children's Hospital of Philadelphia $325k to do research on this exact matter. It also includes a link to report your adverse effects the the FDA. If you would like to report your story click here. I did a little more research and found the name of the co-director conducting the study. Her name is Dr.Ritu Verma. I called the hospital and asked to leave a voicemail with her but was given this website to report my story. I wrote a book. Even though the FDA has a warning on the bottle to discontinue use after 7 days and that there is only a approved dosage for adults, our children are still being poisoned with Miralax. It is toxic to them in these large, ongoing doses. We need to find out who is telling the doctors this is ok! Where are they getting their information???? It needs to stop! I feel like my child was robbed of a normal, happy childhood. I'm not saying he's had a horrible life so far but he has had worries and obstacles that no child should have to go through.
If your child has had adverse effects from the over dosage of Miralax please take these steps and report them to the FDA and write your story to the study at CHOP with the links I provided. The more people that report these cases the better chance we have of stopping it.
Friday, July 29, 2016
Me Against Miralax
This post is the start of something I've been very passionate about but just recently had the time to address. It involves my, now, 9 year old son, that I'll call C. C was born a very healthy, almost 10lb, happy boy. Gorgeous blue eyes and dimples.....I fell in love immediately. He rarely cried and was always smiling.
I breastfed him exclusively for 6 months. I was working full time at a bank and pumping was getting really tough in the tiny bathroom right beside the tiny lunch room. So, I decided it was time to gradually make the switch to formula. One day C was crying and having a very hard time with a bowel movement. I was rubbing his belly and holding him as he cried trying to get it out. He got a little out but his little bottom was bleeding a bit. I called the pediatrician immediately and they saw me on a Sunday morning. They have always been so good like that :) They had me try natural things like pear juice, prune juice and kyro syrup. Nothing was really working though. I believe now that even though the switch to formula initially started a case of constipation, there was a new problem. C was afraid to poop. It really hurt him. He was holding it in. I wish I had realized this earlier but at that time we just believed he was constipated.
By the time he was one year old he was prescribed to Miralax and put on a high fiber diet. This was sure helping him produce a lot of stool but he was still holding it in. I had him tested for Celiac disease thinking maybe he had an allergy to gluten. That was negative. By the time he was 2 and half years old he created a bowel obstruction from holding it in. I made him an appointment with GI at Children's Hospital of Philadelphia. This doctor assured me that this was "normal" and a "phase" and to continue miralax but to add another cap full a day. It was around this time that every time C went to sleep, whether it be a nap or bed time, he woke up violently throwing up. This went on for 3 months. I took him to the pediatrician multiple times, had bloodwork done and no answers. Then it just stopped! We never knew what caused that 3 month episode. I wish I had made the connection then because I believe Miralax was the culprit and it stopped because his body was adjusting to the new dosage.
A couple months went by and still no bowel movements. The blockage was still there but the old stool was becoming liquid and seeping out. He couldn't control it. C's stomach was distended. So full! He was frustrated, uncomfortable and angry. I took him back to CHOP GI. They performed an ultrasound and said that he was full of stool. No kidding, right??! Now I was told to give him a suppository every Friday. This was awful. He would run around in his diaper screaming and crying. But it came out. I was so disturbed that I took a short video of the pain my son was in. I also took a picture of the full diaper weighing a full pound on the scale I used to weigh Tanner. I took this video back to CHOP to show the doctor. This was not normal! When I tried to show him he arrogantly stated there was no need for him to see that and turned his head away in disgust. We never went back.
Now C was 3 years old. He could pee in the potty but was not willing poop even in a diaper. C was now developing some other concerns. He was extremely clingy. He never wanted to leave my side. He developed a sensitivity to a lot of normal things around him. The toilet flushing, echos in big buildings, the site of a balloon, thunder storms and especially fireworks. When he experienced any of those things it resulted in a huge crying panic attack. He was having anxiety about everything. I can remember a christening party we went to and there was a sprinkler system in place in the ceiling. There were also a lot of balloons around the ceiling. We had to leave that party. C was inconsolable because he was so worried the balloons were going to hit the pointy sprinklers and pop. This was just the beginning of a much bigger problem.
We switched to another specialist. I loved CHOP for Tanner but Tanner had a genetic syndrome. I felt that CHOP was great for him. But C was a "normal" child in CHOP's eyes and I don't think they gave him the attention he needed. The suppositories every Friday worked for a while but were very upsetting to us and C. Eventually he was able to resist them. The new specialist had me administer adult enemas 3 days in a row. He said this would clean him totally out so that he would be able to pass bowel movements easier from then on. That was awful! He hated it. It did clean him out but still held in the stool that the miralax was creating. Enemas became a common occurrence since suppositories no longer worked.
Now C was 4. His anxiety was getting worse and so was his anger. He was becoming physically aggressive to his himself and his siblings. He would hit himself with force over and over again in his head. By age 6 he had said he wanted to kill himself more than once. I caught him punching Tanner in the face and multiple times caught him with sharp kitchen utensils pretending to use them as weapons on his siblings. During this time he was in a little Christian preschool. Everyday that I picked him up the teacher would hold C until last to she make sure I knew all of the problems he had that day. At one point he told all the kids in his class and the teacher that he had a bomb in his backpack and was going to blow up the school. Eventually I just tried not to make eye contact with the teacher. Obviously I knew something was wrong and she knew I was trying to figure it out.
This was getting worse by the day. All this time he was still holding his bowels, was on a high dose of Miralax and getting enemas to poop. I did question Miralax multiple times since the back of bottle says to discontinue use after 7 days. I was assured it completely harmless.
C's behaviors were very alarming. It was time to have him evaluated. In addition to all of his sensory issues he was very smart for his age. His vocabulary was amazing! He loved scientific type things and knew every detail. Dinosaurs, planets, insects, sea creatures and especially sting rays.....he was an expert. When he was first evaluated they tested him for Asperger's syndrome which was on the high functioning end of the autistic spectrum. Because he was so social and could look you in the eye they ruled that out and labeled him ADHD. That's what they label every kid that they don't really know what's going on yet. I was advised to medicate him for the ADHD but declined. So, the summer going in to Kindergarten he received occupational therapy and attended social groups with other children with similar issues and was then transferred into the school system with an IEP.
We were blessed that his kindergarten teacher was very in tune with C. Instead of treating him like "the bad kid" she embraced him and helped him so much. He ended up having her for 2nd and 3rd grade too. She knew his actions were out of his control and she helped so much through the process of getting him what he needed in the classroom. C was still a bit physically aggressive with his siblings (like sticking his foot out to trip them or pulling their hair) but verbal aggression took over. Anything we asked him to do it was a fight. Brushing teeth, taking a bath, getting dressed, going to the bathroom, eating.....you name it. The first time he said "I hate you you" I cried. I thought that was teenage behavior. If we were telling him to do something he was fighting us. Big fights came when we expected him to go into a room or upstairs by himself. It didn't matter if it was broad daylight with all of the lights on. Going to bed was a bigger fight. He always needed an adult in the room to go to sleep and then he would wake up all night long in panics yelling for me. The anxiety was brutal for him and us.
When C was 5 and half years old, in kindergarten and still holding his stool in I decided to look into Miralax. I was horrified when I found this article written by a pharmacist. It was titled "Getting mad or forgetful after taking a laxative? Well, according to the US Food and Drug Administration that’s exactly what certain best-selling laxatives can do to you." You can click this link to read for yourself. here. I took the article to our pediatrician immediately!!!! I was sure they would tell me to discontinue use of it now. No! I was assured it was a totally harmless, natural, over the counter drug. I left that appointment and took him off of it. Guess what? In a little over a month C was going to the bathroom regularly. I couldn't believe it. But now I still had to figure out what to do about the psychological damage he had endured. I got wrap around services for him. By third grade he had a mobile therapist, a behavioral therapist, a psychologist and a TSS (an assistant in the classroom to help him). Between 1st and 3rd grade he was diagnosed with anxiety and then he was put on the autistic spectrum (as asperger's syndrome). By the middle of third grade his therapists were quite sure he did not belong on the autistic spectrum and that he was suffering from a personality disorder. Disorders like bipolar, borderline personality and schizophrenia were being considered. His main therapist who I trusted so very much (she's one of the wisest women in the field) advised me to get a psychiatrist. It was really time to consider medication. He was scaring other kids at school, making threats and getting called to guidance counselor multiple times a week. Right before Christmas of 2015 we finally decided to try medication. This was hard. We had fought medication for nearly 5 years. It has taken months to get the right combination but C seems to be doing much better. He is on a medication for the anxiety, a mood stabilizer and a focus medication. He has admitted to hearing voices, seeing things and not being able to tell what is real and what is pretend. The therapists no longer believe Bipolar is what he has. Borderline personality disorder and schizophrenia are very hard to diagnose in a 9 year old child so they are not even trying. Instead they are treating the symptoms and medicating him accordingly. As C gets older we will eventually have a true diagnosis.
Now that I'm not working a bunch of little jobs and just have one very flexible career with Stella and Dot, I decided it's time to do something about this. I started researching again and came across this article written by Dr. Mercola. In this article I found out that there have been over 7000 reports to the FDA about Miralax and these adverse effects. That's ALOT!!! The FDA has granted The Children's Hospital of Philadelphia $325k to do research on this exact matter. It also includes a link to report your adverse effects the the FDA. If you would like to report your story click here. I did a little more research and found the name of the co-director conducting the study. Her name is Dr.Ritu Verma. I called the hospital and asked to leave a voicemail with her but was given this website to report my story. I wrote a book. Even though the FDA has a warning on the bottle to discontinue use after 7 days and that there is only a approved dosage for adults, our children are still being poisoned with Miralax. It is toxic to them in these large, ongoing doses. We need to find out who is telling the doctors this is ok! Where are they getting their information???? It needs to stop! I feel like my child was robbed of a normal, happy childhood. I'm not saying he's had a horrible life so far but he has had worries and obstacles that no child should have to go through.
If your child has had adverse effects from the over dosage of Miralax please take these steps and report them to the FDA and write your story to the study at CHOP with the links I provided. The more people that report these cases the better chance we have of stopping it.
We switched to another specialist. I loved CHOP for Tanner but Tanner had a genetic syndrome. I felt that CHOP was great for him. But C was a "normal" child in CHOP's eyes and I don't think they gave him the attention he needed. The suppositories every Friday worked for a while but were very upsetting to us and C. Eventually he was able to resist them. The new specialist had me administer adult enemas 3 days in a row. He said this would clean him totally out so that he would be able to pass bowel movements easier from then on. That was awful! He hated it. It did clean him out but still held in the stool that the miralax was creating. Enemas became a common occurrence since suppositories no longer worked.
Now C was 4. His anxiety was getting worse and so was his anger. He was becoming physically aggressive to his himself and his siblings. He would hit himself with force over and over again in his head. By age 6 he had said he wanted to kill himself more than once. I caught him punching Tanner in the face and multiple times caught him with sharp kitchen utensils pretending to use them as weapons on his siblings. During this time he was in a little Christian preschool. Everyday that I picked him up the teacher would hold C until last to she make sure I knew all of the problems he had that day. At one point he told all the kids in his class and the teacher that he had a bomb in his backpack and was going to blow up the school. Eventually I just tried not to make eye contact with the teacher. Obviously I knew something was wrong and she knew I was trying to figure it out.
This was getting worse by the day. All this time he was still holding his bowels, was on a high dose of Miralax and getting enemas to poop. I did question Miralax multiple times since the back of bottle says to discontinue use after 7 days. I was assured it completely harmless.
C's behaviors were very alarming. It was time to have him evaluated. In addition to all of his sensory issues he was very smart for his age. His vocabulary was amazing! He loved scientific type things and knew every detail. Dinosaurs, planets, insects, sea creatures and especially sting rays.....he was an expert. When he was first evaluated they tested him for Asperger's syndrome which was on the high functioning end of the autistic spectrum. Because he was so social and could look you in the eye they ruled that out and labeled him ADHD. That's what they label every kid that they don't really know what's going on yet. I was advised to medicate him for the ADHD but declined. So, the summer going in to Kindergarten he received occupational therapy and attended social groups with other children with similar issues and was then transferred into the school system with an IEP.
We were blessed that his kindergarten teacher was very in tune with C. Instead of treating him like "the bad kid" she embraced him and helped him so much. He ended up having her for 2nd and 3rd grade too. She knew his actions were out of his control and she helped so much through the process of getting him what he needed in the classroom. C was still a bit physically aggressive with his siblings (like sticking his foot out to trip them or pulling their hair) but verbal aggression took over. Anything we asked him to do it was a fight. Brushing teeth, taking a bath, getting dressed, going to the bathroom, eating.....you name it. The first time he said "I hate you you" I cried. I thought that was teenage behavior. If we were telling him to do something he was fighting us. Big fights came when we expected him to go into a room or upstairs by himself. It didn't matter if it was broad daylight with all of the lights on. Going to bed was a bigger fight. He always needed an adult in the room to go to sleep and then he would wake up all night long in panics yelling for me. The anxiety was brutal for him and us.
When C was 5 and half years old, in kindergarten and still holding his stool in I decided to look into Miralax. I was horrified when I found this article written by a pharmacist. It was titled "Getting mad or forgetful after taking a laxative? Well, according to the US Food and Drug Administration that’s exactly what certain best-selling laxatives can do to you." You can click this link to read for yourself. here. I took the article to our pediatrician immediately!!!! I was sure they would tell me to discontinue use of it now. No! I was assured it was a totally harmless, natural, over the counter drug. I left that appointment and took him off of it. Guess what? In a little over a month C was going to the bathroom regularly. I couldn't believe it. But now I still had to figure out what to do about the psychological damage he had endured. I got wrap around services for him. By third grade he had a mobile therapist, a behavioral therapist, a psychologist and a TSS (an assistant in the classroom to help him). Between 1st and 3rd grade he was diagnosed with anxiety and then he was put on the autistic spectrum (as asperger's syndrome). By the middle of third grade his therapists were quite sure he did not belong on the autistic spectrum and that he was suffering from a personality disorder. Disorders like bipolar, borderline personality and schizophrenia were being considered. His main therapist who I trusted so very much (she's one of the wisest women in the field) advised me to get a psychiatrist. It was really time to consider medication. He was scaring other kids at school, making threats and getting called to guidance counselor multiple times a week. Right before Christmas of 2015 we finally decided to try medication. This was hard. We had fought medication for nearly 5 years. It has taken months to get the right combination but C seems to be doing much better. He is on a medication for the anxiety, a mood stabilizer and a focus medication. He has admitted to hearing voices, seeing things and not being able to tell what is real and what is pretend. The therapists no longer believe Bipolar is what he has. Borderline personality disorder and schizophrenia are very hard to diagnose in a 9 year old child so they are not even trying. Instead they are treating the symptoms and medicating him accordingly. As C gets older we will eventually have a true diagnosis.
Now that I'm not working a bunch of little jobs and just have one very flexible career with Stella and Dot, I decided it's time to do something about this. I started researching again and came across this article written by Dr. Mercola. In this article I found out that there have been over 7000 reports to the FDA about Miralax and these adverse effects. That's ALOT!!! The FDA has granted The Children's Hospital of Philadelphia $325k to do research on this exact matter. It also includes a link to report your adverse effects the the FDA. If you would like to report your story click here. I did a little more research and found the name of the co-director conducting the study. Her name is Dr.Ritu Verma. I called the hospital and asked to leave a voicemail with her but was given this website to report my story. I wrote a book. Even though the FDA has a warning on the bottle to discontinue use after 7 days and that there is only a approved dosage for adults, our children are still being poisoned with Miralax. It is toxic to them in these large, ongoing doses. We need to find out who is telling the doctors this is ok! Where are they getting their information???? It needs to stop! I feel like my child was robbed of a normal, happy childhood. I'm not saying he's had a horrible life so far but he has had worries and obstacles that no child should have to go through.
If your child has had adverse effects from the over dosage of Miralax please take these steps and report them to the FDA and write your story to the study at CHOP with the links I provided. The more people that report these cases the better chance we have of stopping it.
Thursday, December 3, 2015
The man I called Dad and what led to his suicide
I'm brushing the dust off of my blog after a few years. I have a lot to say. I created this blog to update family and friends on Tanner. While Tanner is doing amazing an exceeding expectations, I want to use this blog to talk about our whole family. Our trials, tribulations and triumphs.
This particular post has played out in my head for months now. I think about my dad every single day. As we are coming up on November 30th, one year since he took his own life, I feel very inclined to talk about his story and what led him to this decision.
I want to start out by saying that in my life, as a mom, the biggest threat in this crazy world is a child predator. There is no crime more disgusting and horrifying to me than any sort of child abuse.
That being said, I'm going to start my story in January of 2012, and work my way backward. And then bring us to the present again. Parker was not yet a month old when I received a call from my dad. Sobbing he said "Jess, I have to tell you something. It's going to destroy our family". My heart sunk. He went on to tell me that he just been arrested on 31 counts of child pornography.
Now, I'm going to take you back to 1989. My mom had just moved herself my sister and I to a little double house on Walton Ave. She was a single mom, going to school and working. A neighbor, who we started calling Mr. D saw a need for a father figure in our lives. My mother also knew we needed that in our lives. Over time my sister and I spent more and more time with him. Amusement parks, museums, lakes, nature bike rides......all kinds of great things. He was a genuine man, filling a void in our lives with love. My mom was thankful for him and my sister and I loved him. He and my mom never dated or anything. But they did become great friends over the years raising us together. Our friends loved him too. There were those handful of friends that weren't allowed around him because their parents thought he was weird. Some of our family didn't like the whole idea either. Eventually, my sister and I started calling him Dad. He was so proud. We filled a void in his life too. When I think back to my childhood and all of those memories...he was there. Always encouraging good character, morals and values.
As we got older and turned into crazy teenagers he always did his best for us regardless of our crappy attitudes and ungratefulness. When I graduated high school and got wrapped up the wrong crowd he didn't scold me. He was there for me, trying to help me make the best decisions. My mom moved to Philadelphia and got married. It created the perfect out for me. For me to escape my surroundings that were dragging me down. I know it killed him when I moved to Philadelphia with my mom and her husband. But he knew that's what I needed. We gave him so much purpose and when I moved to Philadelphia and my sister moved out I think he became depressed. Even though I was far away and grown up, he was still my rock. If I ever needed anything he came through for me. Mentally, spiritually, monetarily....anything. I knew I could depend on him. He was the most selfless person I've ever known. A few years after that my sister and I became mothers right about the same time. He was now promoted to Pappy. He had a purpose again. They loved him. If they could play with, talk to or go to the play ground with anyone.....it was their pappy. Gosh, he loved them so much and they were the center of his world.
So, coming back to January 2012......the story hit the papers the next day. For all of those skeptical people throughout our lives this was the glue that held their suspicions together. It all made sense to them to now. He lost everything....everybody that day. Except for me. Because of the circumstances he never got to say goodbye to my kids. But I talked to him on weekly basis.
I called the lead detective. I needed the facts. He said that they found 31 child pornographic images on my dads computer. I asked about the images. Were they personal photos, when, what, where?????? He said that they were commercial images and that all 31 of them were downloaded on the same day at the same time. Nothing else was found on his computers. There were never any abuse charges against him or any accusations even. I mean, my sister and I were raised by him. My friends were like kids to him. NEVER did he do anything to any of us. We never felt uncomfortable. I just couldn't believe this. Wouldn't someone with Pedophilia have more than one download. Not only that but those pictures were downloaded all at one time on one day. Wouldn't they have more than that?!?! I thought back to my childhood. I questioned everything.
My dad, from day one, had said this was a mistake. He was hacked or something. He tried so hard to prove it. This is what I eventually came up with on my own other than his theory that he was hacked. (No judgment please)
1. Someone that wanted him out of our lives framed him for this. I can think of a few that would benefit from him being removed from our lives. This would be the perfect crime to make sure he was out. He could have committed any other crime and everyone would have stuck by him. I think every person in Altoona knew where he hid the key on his front porch. He left it out for us and our friends if we ever needed to get in when he wasn't home. I feel like going into his house and downloading some images and then reporting it would be pretty simple to do. Some may find that far fetched.
2. He did download the images. As much as I hope this not is the case it is a possibility. Maybe he had a sickness that attracted him to children. As sad and as sick as that makes me I believe there's another side to that if that be the case. If he did have sickness in his head it must have taken some strong will power to turn something so WRONG into something so beneficial. Really think about that. If this is how he felt, he knew how wrong it was and tried to change it into a positive. He had years and years with my sister and our friends, countless opportunities to turn us into victims. But he didn't. Instead, he took care of us, taught us and gave us countless childhood memories that I will cherish forever. He became a grandfather to our children that adored him. He treated them like gold. I think that says something about his character and who he was.
Going back t 2014. He sold his house and moved out of Altoona. He rented a trailer in Carlisle. I called him on Thanksgiving. I left him a voicemail. I wished him a happy Thanksgiving and hoped he got to spend it with his new friends in Carlisle that didn't know what he was going through. He did call me back but I missed him. He left me a voicemail. Of course grateful that I took time to call him on the holiday. He always was so grateful for the little things. I felt incredible guilty that I couldn't see him on the holidays anymore. But he was thankful for the calls. I didn't hear from him again. He took his own life around 9pm November 30th 2014. A single gunshot wound to the head after he unsuccessfully tried to poison himself with carbon monoxide. My dad was a very sensitive man. I will always have images in my head of what he went through that night. I know for a fact he was sobbing. I know he had to have been drinking a lot even though he wasn't a drinker. There's no way he could have pulled that trigger sober. He knew that. I know that.
I didn't even know until December 2nd. I was power of attorney and his executrix. When I got the call I broke down. He had been preparing me for this for months but I had no idea. I don't know how I missed all of the signs. It all made sense now. He had been sending me letters letting me know everything I needed to know for this moment. He prepaid for his cremation. It was already done by the time I even found out. He had every single bill paid. Every document that I needed he had for me in the exact spot he said they would be. Even in his final days all he cared about was making this easier for me. He knew that his suicide would break my heart. He didn't want to be any more of a burden than that.
Now it was time to do everything he prepared me for. Justin and I drove to Carlisle and met my sister. I dreaded walking into his house. It smelled horrible of whatever he tried to do with the carbon monoxide and charcoal grills. I will never for get that smell. The coroner just took his body. Nothing else. Justin and my sister tried to keep me from cleaning up the actual area. But I felt it was my duty. I was his daughter. He did everything for me my whole entire life. He put me and my kids before himself all of the time. I couldn't leave the pillow or towels there where he died. I did cry disposing of that stuff. I sobbed......my poor dad. How did such a selfless, caring, genuine man's life end like this?
So, here I am. A year later. My heart is still hurting. I miss hearing his voice. I miss his advice and guidance. I miss him. His ashes are still here in my living room. I was supposed to scatter them in two different places. I just can't do it yet. I'm not ready to totally let him go. Maybe telling this story will help me. I feel like I have to speak out for him and tell everybody what kind of Dad he was. Everyone needs to know what a great person he was regardless of what the newspapers said. The sad fact is nobody will ever really know the truth. I will never know if he downloaded those pictures. I will never know if he suppressed a demon all of those years. What I do know is my life would have been a lot less happy had he never been it and I feel extremely lucky to have been able to call him my dad. RIP Dad. I miss you.
Thursday, January 2, 2014
If every "Tanner" had an "Anne"
I know it has been an extremely long time since I have written. Like 2 years long! So many times I have wanted to sit down and quickly type something up but even a few minutes seems hard to come by sometimes. Today, I got the ultimate surge of blogging energy brought on by our sweet Tanner speaking his first word. He is a truly amazing child. He continues to beat the odds!!!
As I rolled in the door 15 minutes late (again) after picking kids up and running errands I was greeted at the front door by Anne, Tanner's nurse. She was grinning ear to ear and not even bothered that I was late again. She said she had the greatest video to show me. There, I watched with her our amazing Tanner wave and say "bye". I became overwhelmed with emotion. My eyes filled with tears as I hugged Anne. As I hugged her I thought of all the times over the last month where Tanner would just make the "B" sound and every single time Anne said "Bye". Anne is with us 40 hours a week. When she is not at school with Tanner she is here at home with him. Usually I'm buzzing around the house cleaning, doing laundry, taking care of the other kids, painting letters or one of the other million things that need done. The whole time she is giving Tanner the one on one time he needs and deserves.
This last year Tanner has made incredible progress. He's doing some signing, chews and swallows food, pees in the potty, poops in the potty, and took his first steps all with Anne helping us every step of the way. More families with special needs kids should be approved for nursing. Having Anne here allows us to be great parents to not only Tanner but to give his siblings the attention they need. All the while Tanner getting everything he needs too! We are so blessed with a loving, dedicated nurse and an amazing, determined little boy. I hear so often what amazing parents Justin and I are. We appreciate that so much and love being Tanner's Mommy and Daddy. I just had to point out what an amazing nurse Anne is.
Friday, October 28, 2011
Tanner's giving away an ipad 2
So, if you haven't already heard, Tanner is sharing some of his Tee It Up For Tanner donations to give one of his Wolf-Hirschhorn friends an ipad 2. It's going to be given away in a cutest halloween costume contest on wolfhirschhorn.org. We are so excited!!!! Click here for the full details of the contest. Thank you to all of our family and friends that support Tee It up For Tanner so we can do this.
Tuesday, October 11, 2011
Drum roll please......TANNER IS CRAWLING!!!!!!
So, anyone that knows us well, follows my blog or is familiar with Wolf-Hirschhorn Syndrome knows that this is a HUGE acheivement. We are so proud of Tanner for his endless motivation:) He is our hero.
Saturday, August 13, 2011
Some cute videos of the Tan Man
Tanner is definitely getting into the terrible two's. If he was walking right now he would be into everything!!!!
Tanner loves watching his brothers run around. They motivate him. He wants to run with them so bad!
Tanner loves watching his brothers run around. They motivate him. He wants to run with them so bad!
Sunday, July 24, 2011
The very beginning
This is a blog entry I've been meaning to write for quite some time. It's Tanner's birth story. I have a feeling that I will be crying during my typing as I can feel the tears welling up already just thinking about the emotions.
I went into labor February 24, 2009. I remember being so upset that they may have to do a c section because of the cord being around his neck. They moved and tossed me around hoping to change his position and it finally worked. I was so relieved. I knew that if I had a c section that would limit what I could do with Carter. He had just turned 2 years old and I was already so worried that he would feel like he was losing me a little bit with a new baby around.
On February 25, 2009 at 12:48am Tanner Robert Aman was born. As they placed him on my chest and we met eyes......I knew he looked different. His little lip wasn't "perfect". It looked like a mild cleft lip. It subtly pulled the left side of his face down. His nose looked uneven....one nostril bigger than the other. I said it out loud. Everyone in the room pretended they didn't see it.....but I knew it was there. The nurses took him across the room to clean him up. I thought back to my 3D ultrasound where I clearly stated that I thought I had seen a cleft. They assured me I was mistaken. HOW COULD THEY BE WRONG???? I was so upset about this imperfection!!! I didn't know at the time how much worse the night was going to get. I remember Tanner not crying. I couldn't see what they were doing with him. They told me he was 6 pounds even and 18 inches long. We had family there so they wrapped Tanner up so everyone could hold him but I could tell the staff was anxious to get him back. Everyone was passing him around and celebrating.....I felt numb. I didn't feel like I was in the room. I was not celebrating. Although I was upset about Tanner's lip and nose.....deep in my gut I think I knew it was just a small part of something much bigger.
After family left we were informed that they were going to have Tanner in the NICU because there were some other worries. They said Tanner's testicles had not dropped and were still up in his abdomen, that he could possibly have hypospadias and he was having some respiratory issues. Tanner couldn't come back to my room. We visited him in the NICU where he was in a small breathing tent. We couldn't hold him. I was heart broken.
The next morning we were told they would be transporting him to The Hospital of the University of Pennsylvania (HUP) which was right beside The Children's Hospital of Philadelphia (CHOP). He would be seen by CHOP doctors even though he was at HUP. I begged the doctor to discharge me so I could be with my baby and he gladly did so. When we arrived at the HUP NICU we were met by wonderful nurses that told us the genetics team wanted to speak with us. When they arrived there was an entourage of white coats led by and older, wise looking woman. She immediately began picking Tanner apart. Wide spaced eyes, ear pits, long big toe, asymmetrical skull, finger like thumbs.....the list just went on and on. Things that we hadn't notice at all. She informed us that when there are so many "little" anomalies that it usually is a part of "one big problem"...meaning a genetic syndrome. She said they would take tests and send them away for genetic testing. In the meantime Tanner would stay in the NICU ad undergo other tests to check his vital organs to make sure everything was working properly. He had an ECHO for his heart which turned up nothing. That was such a relief. An ultrasound revealed that Tanner had a horseshoe kidney but was functioning properly. Everything else looked good. Tanner was having major feeding issues though. He wanted nothing to do with nursing which was so disappointing. I felt it was the best thing I had ever done for Carter. He had such a healthy infancy. I began pumping but even that from a bottle was a struggle.
Justin and I were not allowed to stay at the hospital. Every night we would go home and be with our other boys hugging and kissing them more than ever. After they would go to sleep we would relentlessly research genetic syndromes with the symptoms that Tanner had.....just desperately looking for an answer. The wait and the endless list of genetic syndromes was driving us crazy and completely exhausting. Everyday I would wake up, get the boys breakfast and drop them off with one of our relatives that helped us during this time. Then I was back at the hospital. I felt so bad for Tyler and Carter. They had no idea what was going on but they definitely knew that Justin and I were not around like usual and that something was going on. They still had not met their baby brother that they knew was no longer in my belly.
At the time I didn't realize how genetic testing worked. I soon came to realize that Tanner was being tested for one genetic syndrome in specific but I just didn't know which one. I had overheard two of the NICU nurses talking about Tanner. One said to the other "He's being tested for _____________ syndrome." Of all the words for me NOT to hear...it was the actual syndrome name. I was so mad at myself. I begged the nurse to tell me but she said she didn't know what they were testing him for...that I hadn't heard her right. I knew what I heard and I knew she was not allowed to tell me. That didn't make it any less frustrating though. I couldn't believe that the old wise woman knew what to test Tanner for just by looking at him. Especially after my long nights on the Internet researching the endless list of genetic syndromes. There were so many. Whatever she was testing him for I was sure is what he had. I discretely tried to eavesdrop on the nurses charts and notes for the next few days but with no luck. These were the longest days of my life.
On Tuesday March 3rd as I was driving into the city to the hospital and my phone rang. I answered the unknown number with hesitation. It was a social worker informing me that given my sons diagnosis he would be eligible for social security due to his disabilities. My heart sunk. What diagnosis? I had not been given a diagnosis!!!! I was mad at her. This is not what I wanted to hear and especially not how I wanted to hear it. She apologized up and down and rushed off of the phone with me. I immediately called Justin in tears. He was already at work in the city and said he would meet me at hospital. Over the past 6 days we had many deep conversations. We agreed that we could deal with any physical disability....but both prayed that he would mentally be capable of a normal childhood and life. Deep down I feared this wasn't the case after the call from the social worker.
Justin met me at the NICU and as soon as we got there we were advised that the genetics team was on their way to speak with us. This was the moment.....the moment we had been anxiously waiting but also dreading at the same time. Soon enough the entourage of white coats with their wise leader arrived. All stone faced. We were taken in to a room and we all sat down.......all eyes on us. I began sweating.....then the hot tears rolled down my cheeks. They hadn't even started talking yet. The wise woman began telling us that Tanner had a syndrome called Wolf-Hirschhorn syndrome. One of her helpers handed Justin and I each a printed out packet on the syndrome along with a map of Tanner's 4th and 8th chromosomes. She said Tanner was missing a piece of his 4th chromosome and that there was a duplication of the 8th chromosome replacing it. She went on......"moderate to severe mental retardation". My heart crumbled and the tears streaking my cheeks turned into fountains as I began sobbing into Justin's chest. She still continued "50% chance of walking, 50% chance of talking, 93% chance of seizures, failure to thrive, small stature, most likely would need a feeding tube, little to no personality, little to no quality of life, and the worst.....34% chance of death before the age of 2. The rest is a blur. I remember holding Tanner before we left. I remember rocking with him.....sobbing. The nurses told us we had to get Tanner eating before he could come home with us. The drive home was quiet. We had called our parents and siblings and told them the news.
When we finally got home our house was filled with close family members that had gotten the news. My sister was the first person I saw and i crumbled in her arms crying like I had never cried. The whole family was crying.....sobbing actually. It was by far the worst day of my life. Nobody knew what to say to us. All we could do was hug each other and cry.
The next day we did what we normally did. Justin went to work and I went to the hospital. Tanner had to drink 40MLs of breast milk 4 times a day before he was able to come home. The NICU nurses are busy and each are taking care of several babies.....most of which seemed like they didn't have visiting parents. This meant that Tanner was given 20 minutes to eat his 40Mls. If he didn't he was given the rest via a tube that went through his nose. I found that if Justin or I was there for each one of his feeds and he was given a little more time...he would finish it. This was now my mission to get our baby home. The hectic schedule of driving to and from the city in the crazy city traffic and barely seeing our other boys was no fun for any of us. So, this is what we did. We posted ourselves at the hospital for every feed. We took the boys to the NICU on Saturday March 7th to meet their baby brother. We were told that if Tanner continued to finish his bottles through the weekend he would be able to come home Monday. It was hard leaving without him that day. Now that we had all been together I didn't want us to be apart again.
We continued our feeding routine through the weekend and Tanner was able to come home on Monday March 9th. We had set up 9 different specialist appointments within the next month before we even left the hospital. We were so excited to take Tanner home but so nervous at the same time.
Here we are almost 2 and half years later and Tanner is an amazing little boy, touching everyone that he meets. He does have a feeding tube and has had seizures but he also has tons of personality and is thriving at his own pace. Obviously things are so much better than we expected and I couldn't be more happy to say that. We continue to take things one day at time, let Tanner be himself and thank God for bringing him into our lives.
I went into labor February 24, 2009. I remember being so upset that they may have to do a c section because of the cord being around his neck. They moved and tossed me around hoping to change his position and it finally worked. I was so relieved. I knew that if I had a c section that would limit what I could do with Carter. He had just turned 2 years old and I was already so worried that he would feel like he was losing me a little bit with a new baby around.
On February 25, 2009 at 12:48am Tanner Robert Aman was born. As they placed him on my chest and we met eyes......I knew he looked different. His little lip wasn't "perfect". It looked like a mild cleft lip. It subtly pulled the left side of his face down. His nose looked uneven....one nostril bigger than the other. I said it out loud. Everyone in the room pretended they didn't see it.....but I knew it was there. The nurses took him across the room to clean him up. I thought back to my 3D ultrasound where I clearly stated that I thought I had seen a cleft. They assured me I was mistaken. HOW COULD THEY BE WRONG???? I was so upset about this imperfection!!! I didn't know at the time how much worse the night was going to get. I remember Tanner not crying. I couldn't see what they were doing with him. They told me he was 6 pounds even and 18 inches long. We had family there so they wrapped Tanner up so everyone could hold him but I could tell the staff was anxious to get him back. Everyone was passing him around and celebrating.....I felt numb. I didn't feel like I was in the room. I was not celebrating. Although I was upset about Tanner's lip and nose.....deep in my gut I think I knew it was just a small part of something much bigger.
After family left we were informed that they were going to have Tanner in the NICU because there were some other worries. They said Tanner's testicles had not dropped and were still up in his abdomen, that he could possibly have hypospadias and he was having some respiratory issues. Tanner couldn't come back to my room. We visited him in the NICU where he was in a small breathing tent. We couldn't hold him. I was heart broken.
The next morning we were told they would be transporting him to The Hospital of the University of Pennsylvania (HUP) which was right beside The Children's Hospital of Philadelphia (CHOP). He would be seen by CHOP doctors even though he was at HUP. I begged the doctor to discharge me so I could be with my baby and he gladly did so. When we arrived at the HUP NICU we were met by wonderful nurses that told us the genetics team wanted to speak with us. When they arrived there was an entourage of white coats led by and older, wise looking woman. She immediately began picking Tanner apart. Wide spaced eyes, ear pits, long big toe, asymmetrical skull, finger like thumbs.....the list just went on and on. Things that we hadn't notice at all. She informed us that when there are so many "little" anomalies that it usually is a part of "one big problem"...meaning a genetic syndrome. She said they would take tests and send them away for genetic testing. In the meantime Tanner would stay in the NICU ad undergo other tests to check his vital organs to make sure everything was working properly. He had an ECHO for his heart which turned up nothing. That was such a relief. An ultrasound revealed that Tanner had a horseshoe kidney but was functioning properly. Everything else looked good. Tanner was having major feeding issues though. He wanted nothing to do with nursing which was so disappointing. I felt it was the best thing I had ever done for Carter. He had such a healthy infancy. I began pumping but even that from a bottle was a struggle.
Justin and I were not allowed to stay at the hospital. Every night we would go home and be with our other boys hugging and kissing them more than ever. After they would go to sleep we would relentlessly research genetic syndromes with the symptoms that Tanner had.....just desperately looking for an answer. The wait and the endless list of genetic syndromes was driving us crazy and completely exhausting. Everyday I would wake up, get the boys breakfast and drop them off with one of our relatives that helped us during this time. Then I was back at the hospital. I felt so bad for Tyler and Carter. They had no idea what was going on but they definitely knew that Justin and I were not around like usual and that something was going on. They still had not met their baby brother that they knew was no longer in my belly.
At the time I didn't realize how genetic testing worked. I soon came to realize that Tanner was being tested for one genetic syndrome in specific but I just didn't know which one. I had overheard two of the NICU nurses talking about Tanner. One said to the other "He's being tested for _____________ syndrome." Of all the words for me NOT to hear...it was the actual syndrome name. I was so mad at myself. I begged the nurse to tell me but she said she didn't know what they were testing him for...that I hadn't heard her right. I knew what I heard and I knew she was not allowed to tell me. That didn't make it any less frustrating though. I couldn't believe that the old wise woman knew what to test Tanner for just by looking at him. Especially after my long nights on the Internet researching the endless list of genetic syndromes. There were so many. Whatever she was testing him for I was sure is what he had. I discretely tried to eavesdrop on the nurses charts and notes for the next few days but with no luck. These were the longest days of my life.
On Tuesday March 3rd as I was driving into the city to the hospital and my phone rang. I answered the unknown number with hesitation. It was a social worker informing me that given my sons diagnosis he would be eligible for social security due to his disabilities. My heart sunk. What diagnosis? I had not been given a diagnosis!!!! I was mad at her. This is not what I wanted to hear and especially not how I wanted to hear it. She apologized up and down and rushed off of the phone with me. I immediately called Justin in tears. He was already at work in the city and said he would meet me at hospital. Over the past 6 days we had many deep conversations. We agreed that we could deal with any physical disability....but both prayed that he would mentally be capable of a normal childhood and life. Deep down I feared this wasn't the case after the call from the social worker.
Justin met me at the NICU and as soon as we got there we were advised that the genetics team was on their way to speak with us. This was the moment.....the moment we had been anxiously waiting but also dreading at the same time. Soon enough the entourage of white coats with their wise leader arrived. All stone faced. We were taken in to a room and we all sat down.......all eyes on us. I began sweating.....then the hot tears rolled down my cheeks. They hadn't even started talking yet. The wise woman began telling us that Tanner had a syndrome called Wolf-Hirschhorn syndrome. One of her helpers handed Justin and I each a printed out packet on the syndrome along with a map of Tanner's 4th and 8th chromosomes. She said Tanner was missing a piece of his 4th chromosome and that there was a duplication of the 8th chromosome replacing it. She went on......"moderate to severe mental retardation". My heart crumbled and the tears streaking my cheeks turned into fountains as I began sobbing into Justin's chest. She still continued "50% chance of walking, 50% chance of talking, 93% chance of seizures, failure to thrive, small stature, most likely would need a feeding tube, little to no personality, little to no quality of life, and the worst.....34% chance of death before the age of 2. The rest is a blur. I remember holding Tanner before we left. I remember rocking with him.....sobbing. The nurses told us we had to get Tanner eating before he could come home with us. The drive home was quiet. We had called our parents and siblings and told them the news.
When we finally got home our house was filled with close family members that had gotten the news. My sister was the first person I saw and i crumbled in her arms crying like I had never cried. The whole family was crying.....sobbing actually. It was by far the worst day of my life. Nobody knew what to say to us. All we could do was hug each other and cry.
The next day we did what we normally did. Justin went to work and I went to the hospital. Tanner had to drink 40MLs of breast milk 4 times a day before he was able to come home. The NICU nurses are busy and each are taking care of several babies.....most of which seemed like they didn't have visiting parents. This meant that Tanner was given 20 minutes to eat his 40Mls. If he didn't he was given the rest via a tube that went through his nose. I found that if Justin or I was there for each one of his feeds and he was given a little more time...he would finish it. This was now my mission to get our baby home. The hectic schedule of driving to and from the city in the crazy city traffic and barely seeing our other boys was no fun for any of us. So, this is what we did. We posted ourselves at the hospital for every feed. We took the boys to the NICU on Saturday March 7th to meet their baby brother. We were told that if Tanner continued to finish his bottles through the weekend he would be able to come home Monday. It was hard leaving without him that day. Now that we had all been together I didn't want us to be apart again.
We continued our feeding routine through the weekend and Tanner was able to come home on Monday March 9th. We had set up 9 different specialist appointments within the next month before we even left the hospital. We were so excited to take Tanner home but so nervous at the same time.
Here we are almost 2 and half years later and Tanner is an amazing little boy, touching everyone that he meets. He does have a feeding tube and has had seizures but he also has tons of personality and is thriving at his own pace. Obviously things are so much better than we expected and I couldn't be more happy to say that. We continue to take things one day at time, let Tanner be himself and thank God for bringing him into our lives.
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