It's A Boy!
Jayden Keever
9|7|09
5lbs 13o. & 17in.
Burlington, Iowa
He's a baby boy whom was born on September 7th, 2009 whom we love very much with all of our heart. Jayden was born with velo-cardio-facial syndrome which is caused by the deletion of a small segment of the long arm of chromosome 22 (specified as 22q11.2 deletion), Atleast 30 different symptoms have been associated 22q11 deletion. Most of these symptoms are not present in all individuals who have VCFS.
symptoms
- cleft palate, usually of the soft palate (the roof of the mouth nearest the throat which is behind the bony palate);
- heart problems.
- similar faces (elongated face, almond-shaped eyes, wide nose, small ears);
- eye problems.
- feeding problems that include food coming through the nose (nasal regurgitation) because of the palatal differences.
- middle-ear infections (otitis media).
- low calcium due to hypoparathyroidism (low levels of the parathyroid hormone that can result in seizures).
- immune system problems which make it difficult for the body to fight infections.
- differences in the way the kidneys are formed or how they work.
- weak muscles.
- differences in the spine such as curvature of the spine (scoliosis) or bony abnormalities in the neck or upper back.
- learning difficulties
- speech impairment.
Jayden is a very healthy and happy baby boy whom everyone loves being around. He is a very special baby whom will always be a part of my life. I'm sure there will be some " I hate yous" because he's going to have a rough life, but we will be strong for him and get through this together. Jayden has had tests done and all of them are normal which is really good. His cleft palate is normal which is even better. He only has a constipation problem which is very sad because he screams. I feel horrible because there's really not much for me to do. I give him milk magneisa every morning to try and help him out, but sometimes it don't want to work and it makes me sad.
Hello.
My name is Nicole & I am a 24 year old woman with Velo-Cardio-Facial Syndrome (VCFS). I've had thsi syndrome all my life since I was 3 years of age. My mom and dad didn't even know were it came from because nobody in my family has this kind of syndrome. Sometimes it is gentics, but sometimes it just comes naturally.
My symptoms
- speech impairment (cleft palate)
- learning difficulties.
- constipation.
- long fingers.
- ear infections.
- eye problems (lazy eye)
- differences in the spine such as curvature of the spine (scoliosis)
I'm in a wonderful relationship with Justin Keever whom I love very much. We have been dating since 5|17|08 and I couldn't ask for anything better. We have our moments, but no matter what our love for each other will never change. We are a family now & family always stick together. Now that I am a mom I'm trying to be stronger for my son because I want him to know that I love him. I want him to know that I will always be there for him no matter what happens. Live life to the fullest.
That's my story.
I love this its awesome! Great job!
ReplyDeleteWow Nicole, Im so proud of you for telling your story and putting the disease out there...Ive known you pretty much of your life and I know how hard it was for you growing up to be a little different than others...but you are such a strong woman now and I love the fact that you are bringing the syndrome out and shedding some light on it because most people would be ashamed or scared to talk about such a personal subject...i commend you and you have a beautiful family..not to mention strong!!! And with you as Jayden's mother, he too will be a strong individual and surpass obstacles!!!!
ReplyDeleteThank you very much. That means a lot to me coming from you. I will definately post more blogs about my son and his syndrome. He means the world to me and I love him very much.
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