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.
Saturday, April 2, 2011
Sunday, March 20, 2011
Make A Wish
Hi Every one,
It's been one exciting week for Sean. We heard from Make A Wish 3/14/11 that Sean would be meeting with Joshua Gates of Destination Truth on Wednesday March 23,2011. Still waiting to hear where we are to meet with him. We saw the live telecast of Destination Truth on Thursday and had a blast watching it and helping them to look for the Banshee of Ireland. Sean got really excited when he spotted the Banshee. We have got T shirts ordered with DiGeorge & Sean and Team Truth on them for Sean and Josh to have when they have their meeting. I'm hoping to get more made at a later date so family and friends can have them too. Pictures will be put up on Face book and Twitter by the end of this week. As you all know I need help scanning those in.
Love you all !!
It's been one exciting week for Sean. We heard from Make A Wish 3/14/11 that Sean would be meeting with Joshua Gates of Destination Truth on Wednesday March 23,2011. Still waiting to hear where we are to meet with him. We saw the live telecast of Destination Truth on Thursday and had a blast watching it and helping them to look for the Banshee of Ireland. Sean got really excited when he spotted the Banshee. We have got T shirts ordered with DiGeorge & Sean and Team Truth on them for Sean and Josh to have when they have their meeting. I'm hoping to get more made at a later date so family and friends can have them too. Pictures will be put up on Face book and Twitter by the end of this week. As you all know I need help scanning those in.
Love you all !!
Saturday, February 5, 2011
DiGeorge&Sean
Hi Everyone,
We received a phone call from Dr.Larumbae in Fort Lauderdale on Friday. He will be doing all Dental Treatment for Sean starting February 16,2011. This year just keeps getting better and better for Sean.So happy with the Team from Joe DiMaggio in Fort Lauderdale. Looking forward to seeing Sean with a beautiful smile. The Team I'm talking about is the Craniofacial Team at Joe DiMaggio Hospital. If any one needs information just let me know by messaging me via pwest94@blogspot.com, Twitter, or Face Book. Sean is getting excited waiting on word from Joshua Gates of Destination Truth. He talks about meeting him and talking to him about his Film and T.V Career. Sean is such an inspiration and I'm so proud of him and all of his accomplishments. He's getting through his Multiplication and moving on through his Math that he hates.
Starting on U.S. Constitution and he's done a lot of research on it already so it should be a breeze to get through it. Those of you wanting to order DiGeorge & Sean just contact me with the info above. Excited for you all to learn about Sean's Syndrome. Take it easy and have a great Night.
Love to You All!!
We received a phone call from Dr.Larumbae in Fort Lauderdale on Friday. He will be doing all Dental Treatment for Sean starting February 16,2011. This year just keeps getting better and better for Sean.So happy with the Team from Joe DiMaggio in Fort Lauderdale. Looking forward to seeing Sean with a beautiful smile. The Team I'm talking about is the Craniofacial Team at Joe DiMaggio Hospital. If any one needs information just let me know by messaging me via pwest94@blogspot.com, Twitter, or Face Book. Sean is getting excited waiting on word from Joshua Gates of Destination Truth. He talks about meeting him and talking to him about his Film and T.V Career. Sean is such an inspiration and I'm so proud of him and all of his accomplishments. He's getting through his Multiplication and moving on through his Math that he hates.
Starting on U.S. Constitution and he's done a lot of research on it already so it should be a breeze to get through it. Those of you wanting to order DiGeorge & Sean just contact me with the info above. Excited for you all to learn about Sean's Syndrome. Take it easy and have a great Night.
Love to You All!!
Tuesday, February 1, 2011
DiGeorge&Sean
Hi Everyone,
February is finally here! I talked to Bobbi Brasher and Kristen DeLuca from Joe DiMaggio Hospital yesterday and got a lot of answers and the help we needed for Sean. What an awesome team they all are. I want to say a big Thank You to Lara Conley, Matthew Conley, and Tammy Bellflower Nottingham for telling of this wonderful group of people. We are moving forward with the Nasendescopy in a few weeks. Doctor Stelinki
needs to have all information on Sean to make the best decision for surgery. The NasenVideo was awesome that Miss Kristen did for Sean and it was the Vellum that has been giving him the problems he has had since birth.
We will be seeing the Dentist over at Nova and very excited about that as well I hope Matthew is part of that team. The Craniofacial Team at Joe DiMaggio are very compassionate people and are so helpful it is nice to have Doctors on the same page as my husband and I. We are waiting to hear from Make A Wish and Joshua Gates is to contact them this month not that Sean will be meeting him this month. Sean is so excited and can't wait to talk with Josh about his career in the T.V. and Film Industry. Mom wants to talk to him about Cryptozology and Archeology in and around the world. What a great start to 2011 and we can't wait to see what the year will bring for Sean and our family. Please keep us in prayer along with my family. We've had a lot of health issues where my Brother in Laws are concerned and want the best for them as well. We started to a new Church 1/30/11 and can't wait to get back to New Life Church here in Lehigh Acers, Florida. So stay tuned for more information. Have A Great Week You All.
Love To You All,
Tricia, Patrick and Sean
February is finally here! I talked to Bobbi Brasher and Kristen DeLuca from Joe DiMaggio Hospital yesterday and got a lot of answers and the help we needed for Sean. What an awesome team they all are. I want to say a big Thank You to Lara Conley, Matthew Conley, and Tammy Bellflower Nottingham for telling of this wonderful group of people. We are moving forward with the Nasendescopy in a few weeks. Doctor Stelinki
needs to have all information on Sean to make the best decision for surgery. The NasenVideo was awesome that Miss Kristen did for Sean and it was the Vellum that has been giving him the problems he has had since birth.
We will be seeing the Dentist over at Nova and very excited about that as well I hope Matthew is part of that team. The Craniofacial Team at Joe DiMaggio are very compassionate people and are so helpful it is nice to have Doctors on the same page as my husband and I. We are waiting to hear from Make A Wish and Joshua Gates is to contact them this month not that Sean will be meeting him this month. Sean is so excited and can't wait to talk with Josh about his career in the T.V. and Film Industry. Mom wants to talk to him about Cryptozology and Archeology in and around the world. What a great start to 2011 and we can't wait to see what the year will bring for Sean and our family. Please keep us in prayer along with my family. We've had a lot of health issues where my Brother in Laws are concerned and want the best for them as well. We started to a new Church 1/30/11 and can't wait to get back to New Life Church here in Lehigh Acers, Florida. So stay tuned for more information. Have A Great Week You All.
Love To You All,
Tricia, Patrick and Sean
Tuesday, January 18, 2011
DiGeorge & Sean
Hi Everyone,
Looking forward to the end of this week. Make A Wish should be hearing back from Joshua Gates as to when he will be meeting with Sean in February. Sean is so excited and has been counting down the days since November and hoping that Josh can help him get into the Film Industry. I can see my Son doing it all because he's that creative! It's been quite a ride up to Sean's 16th birthday that he had in December and I have a feeling getting to 18 is going to be just as fun. He's the inspiration in my life and between him and God that is what keeps me going most days. I know a lot of you don't understand what is going on in my life and that is fine all I ask is for support and the love that most of you have always given me. I'm here as an example and don't always get it across and if I've offended some then I'm truly sorry but please understand Tricia is doing every thing she can for Sean and some time want to share with others so if there are questions don't hesitate to ask and I want you all to know you all are in my thoughts and prayers and I do realize you all have lots going on too. We are going forward in peace this week and do your best to take it easy and remember to rely on the Lord.
Looking forward to the end of this week. Make A Wish should be hearing back from Joshua Gates as to when he will be meeting with Sean in February. Sean is so excited and has been counting down the days since November and hoping that Josh can help him get into the Film Industry. I can see my Son doing it all because he's that creative! It's been quite a ride up to Sean's 16th birthday that he had in December and I have a feeling getting to 18 is going to be just as fun. He's the inspiration in my life and between him and God that is what keeps me going most days. I know a lot of you don't understand what is going on in my life and that is fine all I ask is for support and the love that most of you have always given me. I'm here as an example and don't always get it across and if I've offended some then I'm truly sorry but please understand Tricia is doing every thing she can for Sean and some time want to share with others so if there are questions don't hesitate to ask and I want you all to know you all are in my thoughts and prayers and I do realize you all have lots going on too. We are going forward in peace this week and do your best to take it easy and remember to rely on the Lord.
Sunday, January 9, 2011
Hi Everyone, what a great week to start off the New Year with. We started back with our Home School Program and this week we are adding the U.S. Constitution to Sean's studies. Looking forward to teaching him all about that. Sean has an appointment with the Pediatrician this week and he's gona get a talking to when I see him. I don't like the fact that Sean had all that Blood work done in July and I never even heard from Doctor Lee or his Nurse as to the results of that test. I'd like to keep Sean there at least until his 18 but at this rate Momma isn't happy about the services from this office. My Husband goes back to the Family Doctor and the Cardiologist this month and anxious to see what they are going to tell us where his heart is concerned and hoping that he can get off most of the medicine that he is on. Exciting days ahead so stay tuned in the days ahead.
Saturday, January 1, 2011
Happy New Year
Hello Everyone,
It's been busy here since Wednesday and that is good for Sean and I. Patrick has been off since Thursday and we are just enjoying him being at home and doing family things together. We took Sean to see Tron today and as usual he loved it. We are still waiting to here from the Team in Fort Lauderdale about Sean's Nasendescopy. Looks like 2011 is going to be an all together good year to start. Praying for Peace, Love,Comfort, Healing and Financial Blessings for all. Safe travels for those who are traveling far from home.Take it easy you all and stay tuned.
It's been busy here since Wednesday and that is good for Sean and I. Patrick has been off since Thursday and we are just enjoying him being at home and doing family things together. We took Sean to see Tron today and as usual he loved it. We are still waiting to here from the Team in Fort Lauderdale about Sean's Nasendescopy. Looks like 2011 is going to be an all together good year to start. Praying for Peace, Love,Comfort, Healing and Financial Blessings for all. Safe travels for those who are traveling far from home.Take it easy you all and stay tuned.
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