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About Eric
Eric was born July 13, 1998, he weighed 5lbs.13oz and was 18 inches long .The pregnancy was pretty normal, we had twin daughters born in 1993, so it was easier on my body. When Eric came into the world, he was beet red and he was very thin, hardly no fat at all . The hospital staff said he had IUGR (intrauterine growth retardation), that something happened while he was inside of me. They said that somehow his food supply was cut off, causing him to be small and thin. He wouldn't eat for his first 24 hours of life, he had to be put on oxygen over night and all he really did was cry in the hospital. Well, we brought him home and he was very "high maintenance" , meaning a lot of crying and fussiness. I was concerned that he was not eating much, maybe an ounce at the most. When he went for his 2 month check-up , the pediatrician noticed a "loud" murmur , so we were sent to the cardiologist where they did x-rays , EKG ,and echocardiogram . The doctor looked at the tapes for what seemed like forever, and came back and told me that there was a problem with his heart. Immediately my pulse quickened and I felt the blood drain from my face. He explained to me that my son has narrowing of the aorta and will need surgery in the future to repair this. He also has pulmonary stenosis which is mild .So he has SVAS and the PS, the doctor says that he needs to see a geneticist because he believes Eric has Williams Syndrome. Of course, we had never heard of this disease before. The cardiologist said they are generally happy people and have somewhat low IQ s , I said being happy isn’t so bad . So the minute I got home, I went right to the Internet to do a search on Williams Syndrome, and realized that the doctor had not told me the full story. After a lot of crying and waiting we got the confirmed diagnoses, it was heartbreaking, my husband responded with denial and I just wanted to research this "syndrome". It was as our lives had suddenly screeched to a halt and we were stranded , not knowing what to do ,who to talk to , and how to move on . But of course we must, our children rely on us , so we couldn’t just curl up in the fetal position and die , we have to take care of what's important and that is our family. So we mourned the loss of that prefect son , and accepted him for who he is and whoever he will grow up to be. Now its February 2000 and Eric is in all his therapies , he just started sitting up and its amazing . He has a g-tube because he doesn’t eat enough to sustain himself and this summer he will probably have open-heart surgery to repair his SVAS. And all the doctors, therapists, tube feeding seems quite normal now, I find it truly astounding what we can all become used to in the face of love. Update April 2000 : Eric had his heart catheterization , and it turns out he will not have to undergo surgery this summer for the SVAS. They found it to be in the moderate range instead of severe. Yay!! Update June 2000 : His pediatrician thinks he may be having what is called absence seizures, I'll put a link on the link page. We are unsure weather or not we will put him on medication for this, he will have an EEG this fall to see if seizures are showing up on that , then possibly further testing , we're not sure yet. But I'll update the site to keep everyone posted. Update September 2000: Eric is getting much stronger now, and since he has been on his seizure medication he can focus and concentrate a bit more. He is not walking but scoots himself all over the place and is up on his knees reaching for things more everyday. He is beginning to sign a little more also. It was found that he is developing kidney stones so he is now on the low calcium formula Calcilo, so far so good on that one . Eric is still tube fed and is gaining slowly, he still doesn't eat anything orally . November he will go into the O.R. and have his teeth worked on , that should be quite interesting. October holds many doctor appointments for him Cardiology, Developmental, Endocrinology, Eyes and ears. Will be updating as events occur. Update January 2001: Well we made it through the holidays , the whole family got the flu this year , high fevers and all . Eric has more seizures and vomits more when he is ill, but thankfully he got over it pretty quickly. Eric is still not walking or pulling himself to stand, but he is still scooting about and up on his knees for everything, pretty quickly I must say. The signing is slowly improving , still inconsistently though. The calcilo-XD has brought his calcium down , in February he will have a renal ultrasound to see if the stones are improving. We still have no eating orally , but he does on occasion stick his tongue out to taste something. His appointment to have dental work in the OR was canceled, they prefer to treat him in the main hospital, because of his cardiac issues, so the wait goes on for that. Developmental saw him in October and they put him at 8 months old , his report says his developmental Quotient is 31, and that he is severely delayed. It's really not news to me , but makes me a bit sad when I see it on paper. But I'll strive to help him become the best he can be . Eric recently got AFO's for his tight heel cords, he doesn't seem to mind them too much , but they do make his little feet sweat. March 2001: Eric is doing well , he just recently had oral surgery under general anesthesia, he had a lot of build-up of tarter and calcium on his teeth along with a cavity or two. He did great under the anesthesia, but he did have a minor complication after. The area under his tongue swelled up partly blocking his airway, so they kept him over night for observation. I'm looking forward to April 29th , cant wait to see everyone. :) May 2001: The state picnic went great, about 4 families showed up , the kids were so cute , and of course it is always great to see other WS families. There are a couple of pictures on the photo page. Eric pulled to stand on Memorial Day May 28,2001. That would make him 34 1/2 months. We were awe struck, it brought tears to our eyes. August 2001: Eric turned 3 July 13th, so on August 9th he will begin going to the special needs preschool, he will go 3 days a week. Eric will be one of the most delayed kids in the class, the only one not walking. So I will give a try and see how he does, but if I feel he is not yet ready, I will try again when he's four. Eric is such a happy lovable boy , he shows that big beautiful smile , and all is well with the world.
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