DiGeorge & Sean

Hi you all, 
              So glad it's the last and final week of July. It's been one heck of a crazy month and I hope August is a bit easier with all of the Doctors appointments we have going on. Getting ready for Sean's Junior year of High School which is hard for me to believe that he's almost done. We got to get cracking on the math and a few other things and all of my teacher friends if you have suggestions those would be welcome but remember I have done so much for Sean and usually do know what to do for school year just nice to get some suggestions from others once in a while. Usually that's from Pam and love her for always being supportive. I wanted to say I appreciate you all so much and for those who have lent an ear when I've needed to vent. The good news is that Sean has over come so much and we are so proud of all the accomplishments and are looking forward to more.
We are taking him back to Nova and for the Nasendoscopy and some more Dental work this week will fill you all in about that when we get back. The Nasendoscopy will be final for what surgeries needed to be done about the "Vellum," that isn't connected and if the flap behind the nose isn't connected. Looking forward to all of those answers with in the next month. Isn't it amazing what God can do through so many circumstances? Josh it looks like Destination Truth had a blast at Comic Con this weekend. Sean has been talking about that all week and talking about what kind of Conventions and things he will have when he has his own Studio.Hope you all have a wonderful and blessed week. Most of all stay positive.
Love to you all,
Sean,Tricia, and Pat

Hey you all just letting you all know that Sean has done really well now with going to Speech Therapy and Occupational Therapy. Miss Kris has a new IPad application for his Speech program and Sean has figured out how to use it in use 2 sessions with the new program that Miss Kris has for him now. He's supposed to say the word then make a sentence well he knows how to go back look at what the sentence is supposed to be then he will say the sentence. I looked at Kris and she just laughed at that whole deal with Sean. It was just to funny today. Miss Kris went to Boston last week for Speech Training and was showing us pictures and he was more interested in talking about the crazy neighbors and what he's going to do about them.lol! We both just laughed at him today. Occupational Therapy he got really serious and was happy that he was going to be able to work on his muscles. She had a long type of pole or pvc pipe that had rubber weights on the end and he thought that was just cool. Miss Shannon had him do hand weights, wrist weights and he even got to play with Therapy play dough.  So we got lot's of  Homework for him to do. They have really come a long well since the early day's of Speech, Occupational Therapy and so on. It just amazes me and Sean picks up on it really well. I'm so proud of him. Thank you Miss Kris and Miss Shannon, Miss Aida and all who work at the Therapy place here in Lehigh Acers you all are very special to Sean and I.

update on Sean

Hi Everyone, Okay there seems to be some confusion as to what is going on in Sean's life. So I will fill you in from the age of 10. Most of you know the Doctor's considered Sean as Developmentally Delayed from Birth to 10 years old. Dr. Ritorosky did all he could for Sean until the age of 2. We then went to Dr. Withams out in LaBelle who wasn't much help and from there we went to Island Coast Pediatrics and Dr. Troast just wouldn't do tests or any thing to help Sean at all. This frustrated me because know one wanted to help Sean even though the Doctor's could clearly see there were major issues and one being that he couldn't speak. Dr. Donaldson and the CMS Team at Lee Memorial Hospital just didn't know enough of what was going on with Sean and wouldn't listen to me to get the Test or surgeries needed for Sean. Finally Dr. Lee is the one who stepped up to the plate and said this is what we can do. We went to Gainesville which is where he had the first dental surgery done. Wasn't a compelete success but had another FISH Test done which was the Genetic Testing that needed to been done for DiGeorge Syndrome that know one would tell us about. It's very frustrating as a Mother knowing that know one wants to help your child. That included all of the dentist who were afraid to touch him for fear of something happening in the middle of a procedure. We learned a lot through Gainesville and they were helpful to a point but it finally took Dr. Stelinki from Fort Lauderdale to help Sean. He is having his teeth fixed and just had a procedure done that is called Videoflourdescopy in which we found out that the "Vellum," was not connected at all. He will be going to have the Nasendescopy done in July to find out if the flap behind the nose is either connected or not. It takes time to find out all these things that are going on and if you don't have Doctor's who are willing to help your child you have to keep digging and find one who will. There are know support groups for DiGeorge Syndrome, Velocardiofacial Syndrome or 22q11 Deletion in Lee County or Surrounding areas you have to go to either to Miami, Orlando, Gainesville, or Jacksonville. Sean has done really well and what you all need to understand is that he has certain limitations on things that he can and can not do not that Momma isn't teaching him. Sean was bullied in public school on top of the issues we have been dealing with his Daddy. So lots of things going on that some of you just don't know about. We do the best we can with what Doctor's we have and you can't put all Children with disabilites or Special Needs in the same basket they are all different and learn in different ways. I'm so proud of the things Sean has accomplished in his short life. I don't trust Sean with just any body because of the bullying issues and until they get services in Lee County for Sean I will continue to Home School Sean and teach him about God in the only way I know how. Just because some of you are Certified Teachers doesn't mean you know all about Sean.

DiGeorge & Sean

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

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.

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.

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 !!