Hi Everyone, It's been an eventfull week here at the West House Hold. My Mom/Sean's Granny had Knee Surgery on Monday not Knee Replacement just surgery to help her walk better than she has in a long time.Our dog, Lady Laura got sick had an infection in the colon not going to describe it here as I know some of you have a weak stomach so I will spare you the details. She's had med's and is doing better today. Unfortunately since Lady Laura was sick we were told we couldn't leave her and didn't make it to Sean's Dentist appointment in Davie so will make a new appointment for him there. I'm over my ear infection but my nerves are a bit rattled this week do to not feeling good and worried about my Mom. So every thing is bothering me more than usual Sean keeps telling me those who are upsetting me had better watch out or they are going to be in trouble. That means his Aunts.lol! The good thing is we are in Remeberance week of Jesus Death and Resurrection. I know there are some of you who haven't accepted him into your lives yet and would like to offer this invitation so repeat after me: Lord Jesus I thank you for all the things you have done in my life and I ask that you come into my heart as we speak with you today and please forgive me of my sins
and we ask that you make us a beacon in this world and to help us tell other of you. We thank you for it all in
Jesus Name Amen!! Those of you who have received Jesus today you can't ask for a better friend than him and I can tell you just with the things that have gone on in Sean's young life and the things he has over come have been because of Jesus. Happy Easter and Blessings to you all, Tricia, Sean, and Pat West
Thursday, April 21, 2011
Saturday, April 2, 2011
DiGeorge Syndrome & Sean
Cleft Lip and Palate: Cleft Lip and Palate is the separation of the two sides of the lip. This includes the bones of the upper jaw and upper gum.
Cleft Palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse or join together as the unborn baby was developing. Cleft Lip and Palate can occur on one side (unilateral cleft lip and palate) or both sides (bilateral cleft lip and palate). The Lip and the Palate develop separately it is possible for the child to have a Cleft Lip, Cleft Palate or both Cleft Lip and Palate.
Soft Cleft Palate: The back part of the mouth roof containing muscles and mucosa (pink skin). The Latin Name for the Soft Cleft Palate is"Velum."
Developmentally Delayed: Described in infants and toddlers who have not achieved skills and abilities, which are expected to be mastered by children of the same age. Delays are in the area's of Physical, Social, Emotional, Intellectual,Speech and Language, and Adaptive Developmental sometimes called Self Help Skills, which can be the following: Dressing, Feeding, and Toileting.
Cleft Palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse or join together as the unborn baby was developing. Cleft Lip and Palate can occur on one side (unilateral cleft lip and palate) or both sides (bilateral cleft lip and palate). The Lip and the Palate develop separately it is possible for the child to have a Cleft Lip, Cleft Palate or both Cleft Lip and Palate.
Soft Cleft Palate: The back part of the mouth roof containing muscles and mucosa (pink skin). The Latin Name for the Soft Cleft Palate is"Velum."
Developmentally Delayed: Described in infants and toddlers who have not achieved skills and abilities, which are expected to be mastered by children of the same age. Delays are in the area's of Physical, Social, Emotional, Intellectual,Speech and Language, and Adaptive Developmental sometimes called Self Help Skills, which can be the following: Dressing, Feeding, and Toileting.
DiGeorge&Sean
DiGeorge Syndrome: is a chromosomal microdeletion. Conotruncal Congenital Heart Disease typifies this syndrome. We found out when Sean was a month old that he had several issues with the heart. He had Restriction to the Aorta, and Congenital Heart Murmur. They thought he had a stroke because the left side of his face drooped. We found through Speech Therapy that he had a Soft Cleft Palate. We saw a Pediatric Cardiologist who was associated with the hospital where Sean was born. He saw the Cardiologist until he was 6 years old. They did some more test and found that he had out grown the Heart Murmur's and was released from the Cardiologist care at that time. Sean's pediatrician is keeping a close eye on his heart condition and will give orders for a new test if needed.
Velo-Cardio-Facial Syndrome: also known as VCFS or 22q11.2 Syndrome or as DiGeorge Syndrome, is the most common Syndrome associated with Cleft Palate. Approximately 1 in 2000-5000 children are born with VCFS. Sean's Genetic's Physcian told us, that they had done some test on people who have hearing related problems and found that they had DiGeorge Syndrome. It is my personal belief that there are many more people with this syndrome and just don't know it. I have had hearging problems from the time I was 2 years old and we know from genetic test that DiGeorge is present on my side of the family.
22Q11.2 Deletion Syndrome: 22a11.2 Deletion Syndrome is a deletion of chromosome22. The deletion occurs near the middle of the chormosome at q11.2.
I wanted to give out more information so people would have an idea of what DiGeorge Syndrome is about.
There is such a lack of information with in the Health Industry and so many parents who have children with DiGeorge Syndrome feel so alone and only want to have an Awareness so people will know and understand what their child is going through.
Velo-Cardio-Facial Syndrome: also known as VCFS or 22q11.2 Syndrome or as DiGeorge Syndrome, is the most common Syndrome associated with Cleft Palate. Approximately 1 in 2000-5000 children are born with VCFS. Sean's Genetic's Physcian told us, that they had done some test on people who have hearing related problems and found that they had DiGeorge Syndrome. It is my personal belief that there are many more people with this syndrome and just don't know it. I have had hearging problems from the time I was 2 years old and we know from genetic test that DiGeorge is present on my side of the family.
22Q11.2 Deletion Syndrome: 22a11.2 Deletion Syndrome is a deletion of chromosome22. The deletion occurs near the middle of the chormosome at q11.2.
I wanted to give out more information so people would have an idea of what DiGeorge Syndrome is about.
There is such a lack of information with in the Health Industry and so many parents who have children with DiGeorge Syndrome feel so alone and only want to have an Awareness so people will know and understand what their child is going through.
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