Sleepless in KY

Well, here goes another sleepless night! AAAHHHH!!!! My beautiful little boy has decided he doesn't want to sleep at night anymore. Apparently this is common in kids with WS. I have been told that certain meds would help him, but I don't want to medicate him unless I have no other choice. I think Sam is worse than most. I could be wrong about that though. This has been going on now (off and on) for a little over a year. I am at my wits end. I am one tired puppy! Most nights I am lucky to get him into bed by 5 am. I have tried putting him into bed earlier but he simply lays there and cries or gets back up after I finally pass out from exhaustion. I get up to find him sitting on the couch watching TV. That scares me to death. It makes me feel like the world's worst mommy. That has only happened twice, but it was enough to make me force myself to sit up until I know for sure that he is asleep. I fantasize about days like those in the picture. What I wouldn't give for 8 hours of sleep at night! Instead of the 4 or 5 I might get during the day. Maybe someday he will be able to get to sleep during the night. I hope! I hope! I hope!

He is such a precious little boy. I count myself very lucky to have him. I just wish he would sleep! LOL! Oh well, maybe someday.

These were taken on Sam's first birthday. By this time I knew that he was very delayed. He hadn't taken his first steps, he was very wobbly when he sat up, he had to be propped up against something to get his balance. His only words at the time were "ba", "da", and "pita". He hadn't said "mama" yet. He could roll onto his stomach and do the "commando crawl"! It was cute but sad too. I still didn't have a diagnoses. He was in a program called First Steps. He had been there for about three weeks when these were taken. They really worked wonders with him. He had some major sensory issues. He didn't like anything on his hands. When I gave him his cake, he wouldn't touch it. I wanted to get some pictures of him eating his cake, so I put his hands in it and hoped he would take it from there. But he didn't. He gagged because of the cake on his hands. I felt so sorry for him. In the top picture he was mad at the cake. I also think he was trying to get a bite without touching it with his hands. LOL. He was a character even then. He has came a long way since then and he still has such a long way to go. His sensory issues have gotten better, but he still struggles with some things.

He finally said "mama" when he was about three years old. I never will forget that day. I was standing in the living room and he was standing up by holding onto the chair and he looked up at me and said "mama". I cried and laughed all at the same time. It was the most beautiful sound in the world to me. His speech finally started coming right after that, but not in the way you would expect. He wouldn't talk any except when I would rock him and sing to him. He started singing with me. I would get tickled because it was so cute and funny. I didn't understand why he wouldn't talk but he would sing along with me. Now that I know he has Williams Syndrome, I know why he did it. People with WS have a love for music that goes way beyond the imagination. He is very musically inclined. He taught himself how to play the chorus to "Old McDonald had a Farm" on his keyboard. It took him about three hours of banging around on it, but he did it. But that is a story for another day.

This is Sam. He was diagnosed with a rare genetic disorder called Williams Syndrome (WS). Our journey started nearly ten years ago. When Sam was first born, I noticed that he seemed different than my other three children. Not only was he much smaller but he also had a much different look about him. His eyes were very puffy, they actually looked like they were swollen. When he was three days old he had two lumps on his bottom gum, and two days later two teeth came through. I had never seen anything like it before. The dentist told me that it was his baby teeth. After about two months they both fell out. He got his permanent teeth to replace them at age 5.

Sam was a pretty quite baby, slept most of the time, I had to wake him up a lot just to get him to eat. When he was around three months old things took a dramatic turn. He started crying all the time, day and night, We were at the emergency room and Dr.'s office more than we were home during that time. The Dr.'s told us it was colic but I knew that wasn't it. I had a child that did have colic. His cries were different than Sam's. His first Dr. (the one that delivered him) gave him some medicine that he was extremely allergic to and when I told his Dr. the reaction he had he told me "Well if it helps him keep giving it to him" direct quote. Needless to say, I found another Dr. After many visits to that one for answers to what was wrong with Sam, That Dr. told me that I was a hypochondriac mother who was making up all this stuff. So, I found yet another Dr. Saw this one once and he also told me that I was making up Sam's problems. Finally went to the Dr. Sam sees now He did the best he could do for Sam for nearly 4 years until finally he just told me, I have done all I know how to do, I honestly don't know what's wrong. So he sent us to a geneticist in Lexington. She examined Sam and after about ten minutes, she tells me that she is almost positive that he has WS. I was in total shock. I had never heard of WS before. I cried all the way home. When I got home I got on the Internet and started researching WS and cried all the harder because of all the problems that a child with WS may develop.

We have since learned that he has supra-valvular aortic stenosis, (SVAS), narrowing of his aortic valve, possible coronary narrowing, scoliosis, pronounced Kyphosis, among other issues. So far it feels like I am on a never ending roller coaster ride, but then I look into those beautiful blue eyes and he gives me that bright smile and it makes it all worthwhile.