We finally saw the neurologist and got to schedule Journey's sleep study. I have been waiting to have his sleep study for months now and now it is scheduled!! My other children were sleeping through the night at 3-4 months, Journey still has only slept through the night once....he is 9 months old!!! I am so ready to see why.
Mother's day had recently passed and I had the best day with my family. We went to see the Great and Powerful Oz and Journey enjoyed watching the BIG screen. He gets so excited and thinks he is a big boy doing big things like the rest of the family. I love seeing him interact more with us as well as his brother and sisters.
Journey is doing better trying to sit up and we have been working on his gross motor skills right now. He has got some good strength in his upper body, he pushes up onto his arms and holds himself up for quite a while. He is reaching and grabbing his toys now and rolling around to get where he wants.
Tuesday, May 14, 2013
Tuesday, April 9, 2013
Journey gets Pneumonia
Journey has had his fair share of complications in these eight months on this earth. As his mother I know just about everything there is to know about this little angel of mine. His breathing has been raspy for as long as I can remember and yet we have yet to find the cause of this. However, when I noticed there was something else wrong I called his doctor right away. He has a wheezing in his breathing that I could feel through his chest and back. He also was not sleeping and crying all the time and had a temperature that was a little on the high side.
When the doctor had the idea that he might have pneumonia he sent us directly to the hospital. My thirty minute doctors appointment has now turned into a five hour wait at the emergency room. Trust me I would rather have nails drilled into my toes then wait in an emergency room with many many sick people when my child is sick. Anyways, it wasn't until the chest x-rays came back that I found out that my little angel, indeed, had pneumonia.
This is so awful! I hear news about people, babies and perfectly healthy grown adults, dying from complications with pneumonia. What does this mean for my little baby, who has already gone through so much in his short little Journey??
I left that hospital around 1:30 in the morning with antibiotics and inhaler and numerous "rules" that the doctor has given me. Journey now lives off of a nebulizer machine along with many additions to his daily medication routine. By the way, I am not one to give my children medication either. I have studied holistic medicine and natural approaches but Journey has just put me at a loss.
Journey is doing better. He still smiling and still laughing and being the same old enjoyable angel we all know him to be. He is such an inspiration to my life. My worries all seem to melt away when I realize how strong the two of us are. I feel we can get through anything.
When the doctor had the idea that he might have pneumonia he sent us directly to the hospital. My thirty minute doctors appointment has now turned into a five hour wait at the emergency room. Trust me I would rather have nails drilled into my toes then wait in an emergency room with many many sick people when my child is sick. Anyways, it wasn't until the chest x-rays came back that I found out that my little angel, indeed, had pneumonia.
This is so awful! I hear news about people, babies and perfectly healthy grown adults, dying from complications with pneumonia. What does this mean for my little baby, who has already gone through so much in his short little Journey??
I left that hospital around 1:30 in the morning with antibiotics and inhaler and numerous "rules" that the doctor has given me. Journey now lives off of a nebulizer machine along with many additions to his daily medication routine. By the way, I am not one to give my children medication either. I have studied holistic medicine and natural approaches but Journey has just put me at a loss.
Journey is doing better. He still smiling and still laughing and being the same old enjoyable angel we all know him to be. He is such an inspiration to my life. My worries all seem to melt away when I realize how strong the two of us are. I feel we can get through anything.
Monday, April 8, 2013
Mother of 4
Today Journey turns 8 months. I absolutely can not believe how fast that time flies by. Everything my son has done so far have made me so proud. Our family has come a long way since last summer. His health continued to get better and my hopes are getting higher. I have slowed down all my research on Down Syndrome specifically and m focusing more on...well...parenting in general. I have put so much pressure on myself to know absolutely EVERYTHING there is to know about my son's diagnosis that I got lost in the knowledge and forgot why I wanted to be a parent in the first place.
Journey is my son, and he is my son above everything else. So I take my time to learn about HIM and not his diagnosis for a while. Journey loves smiles and if he smiles at you he knows you will smile back. He seems to do this to lighten me up out of a stressful mood and makes me realize what's more important. He has taught me to take the time to enjoy the moments I have with him and I don't take one moment for granted. Journey loves to watch sports in the morning. He expects a bottle of juice for a snack around lunch time. He loves to play piano on Daddy's tablet. He says "mama" and "dada". I noticed he always looks up to his big brother and I can see he is studying him. He loves when I sing to him Danny's Boy or Sunshine. He is also very ticklish and loves to giggle. He is a typical little boy and I am lucky I get to know him.
Also I am the parent of three other children as well and one is not more special than the other. Kiana is so smart and beautiful. I often see her as older than she really is because even though she is 6 years old she acts much older. I see her running her own life and being independent. She is obsessed with vampires and Monster High. She is so good with her baby brother and will stop doing anything she is doing to help take care of him and help me out.
Edwin is growing to be such a great little man. He is my biggest helper all of the time and I just know one day he is going to make some girl very happy. He is full of love and always looking for ways to help the girls in his family. He is protective of his sisters and baby brother. He loves super heroes and enjoys spending time with his daddy playing basketball. I just registered him for kindergarten for the fall and he is super excited to go.
Shelby loves to dance and does everything just like me. She is my little mini me and I'm trying to get her into head start. She is pretty smart and really stubborn just like her mother. She loves having her hair and nails done and loves dressing up. She is very girly.
Next I hope to learn something new about myself. Spend some time on me and find out who else I am. I know the majority of me is a mother, but I'm also an aunt, a daughter, friend and wife. There is more to me that I just haven't learned yet because I have never taken the time to learn it. So that is definitely something I plan to take the time to work on.
Journey is my son, and he is my son above everything else. So I take my time to learn about HIM and not his diagnosis for a while. Journey loves smiles and if he smiles at you he knows you will smile back. He seems to do this to lighten me up out of a stressful mood and makes me realize what's more important. He has taught me to take the time to enjoy the moments I have with him and I don't take one moment for granted. Journey loves to watch sports in the morning. He expects a bottle of juice for a snack around lunch time. He loves to play piano on Daddy's tablet. He says "mama" and "dada". I noticed he always looks up to his big brother and I can see he is studying him. He loves when I sing to him Danny's Boy or Sunshine. He is also very ticklish and loves to giggle. He is a typical little boy and I am lucky I get to know him.
Also I am the parent of three other children as well and one is not more special than the other. Kiana is so smart and beautiful. I often see her as older than she really is because even though she is 6 years old she acts much older. I see her running her own life and being independent. She is obsessed with vampires and Monster High. She is so good with her baby brother and will stop doing anything she is doing to help take care of him and help me out.
Edwin is growing to be such a great little man. He is my biggest helper all of the time and I just know one day he is going to make some girl very happy. He is full of love and always looking for ways to help the girls in his family. He is protective of his sisters and baby brother. He loves super heroes and enjoys spending time with his daddy playing basketball. I just registered him for kindergarten for the fall and he is super excited to go.
Shelby loves to dance and does everything just like me. She is my little mini me and I'm trying to get her into head start. She is pretty smart and really stubborn just like her mother. She loves having her hair and nails done and loves dressing up. She is very girly.
Next I hope to learn something new about myself. Spend some time on me and find out who else I am. I know the majority of me is a mother, but I'm also an aunt, a daughter, friend and wife. There is more to me that I just haven't learned yet because I have never taken the time to learn it. So that is definitely something I plan to take the time to work on.
Friday, March 8, 2013
Inked
This year I will be turning 28 years old. I have four children and no, I have never gotten a tattoo, until now. Tattoos are for life and I never wanted to get something I regretted permanently inked onto my body. Honestly, I never even thought I would actually get one. The only thing I would ever get on me would be my children and things that I stand for. Once I found out Journey was diagnosed with Down Syndrome, I instantly became an advocate for Down Syndrome. Once I found the Precious Journey butterfly I knew that would be a perfect way to represent both my beautiful son and show awareness for something I stand so strongly about, Down Syndrome.
This picture I think just completely represents life in general and the love I hold for my son. As I hold him so close he looks down at my new art and he just knows that I am always going to stand for him. I am always going to do everything in my power to make him succeed and live a happy life.
I chose the butterfly as my first tattoo for many reasons. 1, I use it to represent Precious Journey to promote Down Syndrome Awareness. 2, It's simply just beautiful and presents the blue and yellow ribbon perfectly and shows exactly what I represent. 3, the Journey of a butterfly is a challenging one and butterflies are often under appreciated for the beauty they add to they world and just like children and adults with Down Syndrome, they make the world more beautiful.
Sunday, January 27, 2013
The Journey Continues
It took one very large sleeping pill for me to get to sleep. Without my baby in my arms I felt so empty. So lonely. There was nothing I could do. I asked to be discharged the next morning so I could head up to be with my baby. I did just that. I made arrangements at the David's House so Jeremy and I could have a place to stay. David's house is a house that offers rooms to parents who children are in the hospital's ICU. After I was discharged we quickly ran home to pack our stuff, we were not sure how long we would have to be at the hospital.
It was about an hour and a half long drive to get to the hospital where my son was. It was a long and nervous drive to the hospital and I still wasn't fully recovered from the birth. When we got to our new home we got settled in our room and unpacked our clothes. We were in the bear room and there were stuffed animal bears that decorated our room. Considering what we were going through we had a very nice room that was comfortable and made us feel at home. Then we went to see our baby.
In the first few moments we seen our son he was hooked up to all these wires. We were told we had a very sick son. He had pulmonary hypertension and was not able to breathe on his own and his heart was not working properly. They had to sedate him so he was in a medical coma. Seeing him this sick was the worst thing ever. I was heartbroken. It was then they sat down to explain everything to Jeremy and I but I didn't hear anything. Everything was a blur to me and their voices were all muffled. Through my head ran all the things that I could have done to make a baby so sick. I thought I had done everything right and I tried to have a healthy pregnancy.
During the many doctors explaining to me how sick my child was they informed us that he then needed to be transported to Boston Children's Hospital to receive even better care. We were not even there for 30 minutes and they were already again taking him from us. With all this news I was overwhelmed. I started to drift away and wanted this all to be a dream. During an extreme anxiety attack I fainted. I could not take any more bad news. When the ER doctors came to the NICU to take care of me I declined their care so I could quickly get on my way to Boston. I wanted to be there when my son got there so he would spend as much time with me as he could. We packed up our room and we were on our way.
Boston was bitter sweet. It was nice to be in such a busy city and at the best hospital in the world, but it was awful I had to be there because my son was so sick. The hospital was huge and looked like a very fun place. We checked in and got hospital badges so we could enter certain areas of the hospital. Then we got to see our baby. He was beautiful and his nurse was very nice and comforting. They gave us a room where we could keep our stuff and sleep. I settled in and unpacked my stuff realizing this was now my new home for a while.
It was about an hour and a half long drive to get to the hospital where my son was. It was a long and nervous drive to the hospital and I still wasn't fully recovered from the birth. When we got to our new home we got settled in our room and unpacked our clothes. We were in the bear room and there were stuffed animal bears that decorated our room. Considering what we were going through we had a very nice room that was comfortable and made us feel at home. Then we went to see our baby.
In the first few moments we seen our son he was hooked up to all these wires. We were told we had a very sick son. He had pulmonary hypertension and was not able to breathe on his own and his heart was not working properly. They had to sedate him so he was in a medical coma. Seeing him this sick was the worst thing ever. I was heartbroken. It was then they sat down to explain everything to Jeremy and I but I didn't hear anything. Everything was a blur to me and their voices were all muffled. Through my head ran all the things that I could have done to make a baby so sick. I thought I had done everything right and I tried to have a healthy pregnancy.
During the many doctors explaining to me how sick my child was they informed us that he then needed to be transported to Boston Children's Hospital to receive even better care. We were not even there for 30 minutes and they were already again taking him from us. With all this news I was overwhelmed. I started to drift away and wanted this all to be a dream. During an extreme anxiety attack I fainted. I could not take any more bad news. When the ER doctors came to the NICU to take care of me I declined their care so I could quickly get on my way to Boston. I wanted to be there when my son got there so he would spend as much time with me as he could. We packed up our room and we were on our way.
Boston was bitter sweet. It was nice to be in such a busy city and at the best hospital in the world, but it was awful I had to be there because my son was so sick. The hospital was huge and looked like a very fun place. We checked in and got hospital badges so we could enter certain areas of the hospital. Then we got to see our baby. He was beautiful and his nurse was very nice and comforting. They gave us a room where we could keep our stuff and sleep. I settled in and unpacked my stuff realizing this was now my new home for a while.
Saturday, January 26, 2013
A Journey Begins Part 1
After a long nine months, it was now time, time for our baby to enter this world and our beautiful family. We couldn't be more excited. We had decided to name him Journey because while I was pregnant there were so many problems. We were told that he would have a genetic disorder and that it could possible be fatal. That didn't matter to Jeremy and I. It was my job to do my best to take care of this child and that was my only goal at this point.
When he was born they immediately took him. He wasn't breathing and had Pulmonary Hypertension. He has to be rushed down to the NICU where they could put him on oxygen. Of course I wasn't able to go with him since I has just given birth so Jeremy rushed with him. I have not been alone in nine months, I have always had my baby with me...now, 2 minutes after giving birth, I am all alone and I wasn't sure what was going on with my baby boy.
I waited about an hour for them to find me a room. The hospital was very busy that day and I had the baby in the triage room. When they finally got me to a room the nurse wheeled me down to see by new born baby. He was beautiful. I was so in love. He was hooked up with oxygen and wires but I got to hold him for the first time for about a minute. I cried when I had to give him back.
Finally the doctor came over to talk. So overwhelmed by everything I tried so hard to listen and understand. Bottom line was, we had a very sick baby boy. He needed immediately to be rushed to Lebanon to get better care. I was so scared. What was I to tell people when they came to see the baby? At this point I didn't want any visitors. My two sister-in-laws, my nana and my brother was there to see the baby taken away by the transport team. I was a mess. I couldn't be discharged because I just gave birth so I couldn't go with him. After nine months with my baby, we were now a state away.
Jeremy and I went back to my room where we ate lunch. Soon after that the nurse came in to tell me I had to move rooms, that they needed the room I was in for a mom with a baby. She was very nice about it but I was hurt, I wish I had my baby. Instead of breast feeding, I was pumping and instead of taking care of my baby, I was reading all alone. This was awful. I couldn't wait to be with my baby. I just couldn't wait to hold him and kiss him.
When he was born they immediately took him. He wasn't breathing and had Pulmonary Hypertension. He has to be rushed down to the NICU where they could put him on oxygen. Of course I wasn't able to go with him since I has just given birth so Jeremy rushed with him. I have not been alone in nine months, I have always had my baby with me...now, 2 minutes after giving birth, I am all alone and I wasn't sure what was going on with my baby boy.
I waited about an hour for them to find me a room. The hospital was very busy that day and I had the baby in the triage room. When they finally got me to a room the nurse wheeled me down to see by new born baby. He was beautiful. I was so in love. He was hooked up with oxygen and wires but I got to hold him for the first time for about a minute. I cried when I had to give him back.
Finally the doctor came over to talk. So overwhelmed by everything I tried so hard to listen and understand. Bottom line was, we had a very sick baby boy. He needed immediately to be rushed to Lebanon to get better care. I was so scared. What was I to tell people when they came to see the baby? At this point I didn't want any visitors. My two sister-in-laws, my nana and my brother was there to see the baby taken away by the transport team. I was a mess. I couldn't be discharged because I just gave birth so I couldn't go with him. After nine months with my baby, we were now a state away.
Jeremy and I went back to my room where we ate lunch. Soon after that the nurse came in to tell me I had to move rooms, that they needed the room I was in for a mom with a baby. She was very nice about it but I was hurt, I wish I had my baby. Instead of breast feeding, I was pumping and instead of taking care of my baby, I was reading all alone. This was awful. I couldn't wait to be with my baby. I just couldn't wait to hold him and kiss him.
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