Matthews Mommy
11-04-2006, 01:33 PM
Matthew's Cranio Journey
In September 2001, I found out I was having my fourth child. As exciting as it can be I was on a Catgory X medication called Coumadin to stop me from forming too many clots and I knew it was risky. I stopped my medication immediately and notified my doctor. She had recommended terminating the pregnancy but I refused to do that. So I was referred to a Genetic Doctor to assess the situation. I was told that at the time I stopped the medication the baby should be fine, but a level two ultrasound was ordered for a certain period in the pregnancy.
I was currently on a prefilled syringe with a medication called Lovenox to prevent clots. I was given 60mg 2x daily when I was supposed to be on 30mg 1x daily. This was a few months before they recognized the mistake made by my doctor.
The ultrasound came and they were concerned with the babies head growth...they also said it would be a boy. I was worried about his head but excited to tell my oldest son and only boy among two sisters that he would have his baby brother. They ordered another level 2 ultrasound and told me not to worry. The second time they said that everything seemed to be okay now and he was fine.
On May 14th 2002 I gave birth to a gorgeous 8lb. 3oz. 24inch
baby boy. I named him Matthew (gift of God) Ezekial (strength of God).
By the first week after I noticed that Matthew did not have a soft spot being a mom of three other children I was concerned and knew this was not common. I also noticed during his first sit bath that he had a bulge in the back of his head, concerned I brought him to the pediatrician.
She explained that I was correct in my findings and another doctor needed to come in and check him. It was then for the first time I heard Craniosynostosis, they were concerned my Matthew had this at the time he was only 2 months old and I was nervous. Matthew was sent for x-rays, and CT scans.
As I sat home researching on the computer I was so scared about what I read and the pictures I saw, but trying to be that strong rock mother that had to be composed.
My husband was very sensitive to this and fell apart, he could not work or do anything.
The answer was back and they told us Matthew had Craniosynostosis he was referred to a Neurosurgeon for further diagnosis and testing. I still bottled up my emotions and took it as it came while my husband continued to fall apart.
The first visit with the Neurosurgeon was grim and I did not like his cocky attitude. He believed my son may not have this condition and checked our head shapes...the nerve. He said he wanted his facility to do Ct-scans with 3d and bone windows because it was more advanced and so we were left in waiting and wondering for a few more weeks.
The day we went to have our final visit my husband and I were nervous as we entered the room he sat us down and explained that Matthew did infact have true Craniosynostosis of the Sagittal Suture. Even as I write this now I can still hear his voice saying that sentence to me. He said the only way to go would be to correct it surgically because Matthew's report showed signs of pressure building. He was scheduled for October 19th 2002.
As the days passed my husband took leave from work and I still researched as if it were my way of dealing..I guess.
The days flew by and Surgery Day came my son was a beautiful 5 month old with lots of smiles. We went to the PICU and got ready and as the IV'S were being placed it finally hit me I fell apart completely as I yelled to my husband take over and ran away. They would not let me back in because he needed a chest tube put in and they knew I could not handle it.
When he was sedated and ready we escorted him to Surgery and he was blowing bubbles and he made me laugh once more. My husband fell to his knees in tears and prayed to God that he would surrender to him eternally if he brought our son through this. Thank god for this one big hearted nurse who held us up. As I signed over all his advance directive papers I cried and kissed my baby boy one last time.
The surgery seemed like an eternity and my sister and Dad joined us, they made me eat...while my husband slept through most of it. My sister and dad were lifesavers and I was so happy to have them with me. My sister is my best friend and we share a lifetime of bonding and memmories to her it was like her own child, as I feel the same for my niece.
The time finally came and they called us up to the PICU 6 hours later. There was my baby all bandaged and sleeping, but groaning they gave him morphine for pain. I was not allowed to hold him yet and the anticipation killed me.
I slept at the hospital with my husband for the next 3 nights.
When he was moved after 2 days to the pediatric floor I finally held him and fed him I never wanted to put him down.
After 4 days there we were able to go home and I was very fond of our Neurosurgeon he did an excellent job and Matthew NEVER swelled his eyes never swelled shut...I was satisfied.
My children Vinny, Alexandria, and Elissa were so happy to see their Baby brother come home. They made him lots of pictures and decorated the wall for him.
Matthew's Development
When Matthew started crawling I started realizing he would drag a leg, and little things his arms developed a problem where the joint at the elbow would come displaced very easily, the doctor's had to teach us how to fix the problem by simply bending his arm up to the shoulder and holding it in place. We now know he is double jointed. He also was not talking by 18 months he drooled a lot and would keep his mouth closed and talk through his teeth, he used to pull me around the house desperatley trying to communicate with me and tell me what he wanted.
Sometimes he would get these really bad fits were he would smack me very hard in the face with all of his might, or move the furniture around to climb in the window and just sit there like a cat. He hated holding our hand outside and still does, and he was easily frustrated. I always sang to all of my children to soothe them but he would act like my voice pained him, and even my affection.
As time started to pass we realized something was really wrong and they told me he may dart into the street, and he will have no sense of danger but they could not diagnose him until age 3.
He continually got ear infections and his new doctor told me he was special, his response to touch was different....but still no answers.
It took his behavior and speech that really made me pursue this, I finally now got a diagnosis for Matthew ....he was evaluated 4 times.
Matthew is 4 years old and has Aspergers Syndrome (mildly Autistic) He also has Low muscle tone, low reflexes, signifcant pronation of the feet, and a speech delay. His pragmatics needs therapy.
Matthew now is in a mainstream Pre-K class until his paperwork is complete but will be moved to a self-contained or inclusion class, that he will receive sensory therapy, Occupational Therapy, Speech Therapy, ABA, and psychotherapy.
Here is the face of Autism NO JOY, NO REACTION, it's all gone sometimes you can get that smile out of him but smiles come rare so do hugs and kisses.
It feels like sometimes someone came in the middle of the night and robbed us.
In September 2001, I found out I was having my fourth child. As exciting as it can be I was on a Catgory X medication called Coumadin to stop me from forming too many clots and I knew it was risky. I stopped my medication immediately and notified my doctor. She had recommended terminating the pregnancy but I refused to do that. So I was referred to a Genetic Doctor to assess the situation. I was told that at the time I stopped the medication the baby should be fine, but a level two ultrasound was ordered for a certain period in the pregnancy.
I was currently on a prefilled syringe with a medication called Lovenox to prevent clots. I was given 60mg 2x daily when I was supposed to be on 30mg 1x daily. This was a few months before they recognized the mistake made by my doctor.
The ultrasound came and they were concerned with the babies head growth...they also said it would be a boy. I was worried about his head but excited to tell my oldest son and only boy among two sisters that he would have his baby brother. They ordered another level 2 ultrasound and told me not to worry. The second time they said that everything seemed to be okay now and he was fine.
On May 14th 2002 I gave birth to a gorgeous 8lb. 3oz. 24inch
baby boy. I named him Matthew (gift of God) Ezekial (strength of God).
By the first week after I noticed that Matthew did not have a soft spot being a mom of three other children I was concerned and knew this was not common. I also noticed during his first sit bath that he had a bulge in the back of his head, concerned I brought him to the pediatrician.
She explained that I was correct in my findings and another doctor needed to come in and check him. It was then for the first time I heard Craniosynostosis, they were concerned my Matthew had this at the time he was only 2 months old and I was nervous. Matthew was sent for x-rays, and CT scans.
As I sat home researching on the computer I was so scared about what I read and the pictures I saw, but trying to be that strong rock mother that had to be composed.
My husband was very sensitive to this and fell apart, he could not work or do anything.
The answer was back and they told us Matthew had Craniosynostosis he was referred to a Neurosurgeon for further diagnosis and testing. I still bottled up my emotions and took it as it came while my husband continued to fall apart.
The first visit with the Neurosurgeon was grim and I did not like his cocky attitude. He believed my son may not have this condition and checked our head shapes...the nerve. He said he wanted his facility to do Ct-scans with 3d and bone windows because it was more advanced and so we were left in waiting and wondering for a few more weeks.
The day we went to have our final visit my husband and I were nervous as we entered the room he sat us down and explained that Matthew did infact have true Craniosynostosis of the Sagittal Suture. Even as I write this now I can still hear his voice saying that sentence to me. He said the only way to go would be to correct it surgically because Matthew's report showed signs of pressure building. He was scheduled for October 19th 2002.
As the days passed my husband took leave from work and I still researched as if it were my way of dealing..I guess.
The days flew by and Surgery Day came my son was a beautiful 5 month old with lots of smiles. We went to the PICU and got ready and as the IV'S were being placed it finally hit me I fell apart completely as I yelled to my husband take over and ran away. They would not let me back in because he needed a chest tube put in and they knew I could not handle it.
When he was sedated and ready we escorted him to Surgery and he was blowing bubbles and he made me laugh once more. My husband fell to his knees in tears and prayed to God that he would surrender to him eternally if he brought our son through this. Thank god for this one big hearted nurse who held us up. As I signed over all his advance directive papers I cried and kissed my baby boy one last time.
The surgery seemed like an eternity and my sister and Dad joined us, they made me eat...while my husband slept through most of it. My sister and dad were lifesavers and I was so happy to have them with me. My sister is my best friend and we share a lifetime of bonding and memmories to her it was like her own child, as I feel the same for my niece.
The time finally came and they called us up to the PICU 6 hours later. There was my baby all bandaged and sleeping, but groaning they gave him morphine for pain. I was not allowed to hold him yet and the anticipation killed me.
I slept at the hospital with my husband for the next 3 nights.
When he was moved after 2 days to the pediatric floor I finally held him and fed him I never wanted to put him down.
After 4 days there we were able to go home and I was very fond of our Neurosurgeon he did an excellent job and Matthew NEVER swelled his eyes never swelled shut...I was satisfied.
My children Vinny, Alexandria, and Elissa were so happy to see their Baby brother come home. They made him lots of pictures and decorated the wall for him.
Matthew's Development
When Matthew started crawling I started realizing he would drag a leg, and little things his arms developed a problem where the joint at the elbow would come displaced very easily, the doctor's had to teach us how to fix the problem by simply bending his arm up to the shoulder and holding it in place. We now know he is double jointed. He also was not talking by 18 months he drooled a lot and would keep his mouth closed and talk through his teeth, he used to pull me around the house desperatley trying to communicate with me and tell me what he wanted.
Sometimes he would get these really bad fits were he would smack me very hard in the face with all of his might, or move the furniture around to climb in the window and just sit there like a cat. He hated holding our hand outside and still does, and he was easily frustrated. I always sang to all of my children to soothe them but he would act like my voice pained him, and even my affection.
As time started to pass we realized something was really wrong and they told me he may dart into the street, and he will have no sense of danger but they could not diagnose him until age 3.
He continually got ear infections and his new doctor told me he was special, his response to touch was different....but still no answers.
It took his behavior and speech that really made me pursue this, I finally now got a diagnosis for Matthew ....he was evaluated 4 times.
Matthew is 4 years old and has Aspergers Syndrome (mildly Autistic) He also has Low muscle tone, low reflexes, signifcant pronation of the feet, and a speech delay. His pragmatics needs therapy.
Matthew now is in a mainstream Pre-K class until his paperwork is complete but will be moved to a self-contained or inclusion class, that he will receive sensory therapy, Occupational Therapy, Speech Therapy, ABA, and psychotherapy.
Here is the face of Autism NO JOY, NO REACTION, it's all gone sometimes you can get that smile out of him but smiles come rare so do hugs and kisses.
It feels like sometimes someone came in the middle of the night and robbed us.