Wednesday, November 29, 2006

He likes me - he really likes me!

He DOES like me!!

For you non-WS parents out there, your baby cooing and caring that you are holding him is foreign to many WS parents. (Not all - but many.) I hear as the WS child grows, he starts to care more that his mother has left the room, or his father left the house. They start to care where their parents are. Right now hen people want to hold Brady and ask if he would mind, it's a definite "Um, go right ahead - he doesn't care if I'm not holding him". It's not a pity-seeking answer - it's the truth. He can be held from one person to the next and not realize or care if it's me.

Now, my mother might disagree with that statement. She says, "of course he knows you." But, really, he doesn't. She should tell me that he does care- it is her job as the mother after all. But now, at age 13 months, I feel like he is starting to care. He is waking up at midnight or so just to say hi. Isn't doing it to get up and eat. This boy who would before lay and look at the mobile for what seems like hours if I let him all of a sudden will chill out with me, stare at me, look for me. Maybe a little early Christmas present? :)

Thursday, November 23, 2006

Close Ties

It's a boy's house here in Bradyland. His brother Michael, seven years his senior, has been a constant source of companionship for Brady. Brady watches Michael every time he enters the room and keeps his eye on him when they are together. In the car, suddenly the windows are nothing to be enamored with; he keeps his eyes on Michael whether Michael is talking or not. (the "or not" part is very seldom, I have to say) He will pay strict attention if Michael is yelling or getting yelled at. Clearly, he is the favorite.

Michael is no different. "Tell Brady goodbye" and "Give Brady a hug" are what he says when he leaves for school every morning. He walks in and wants to hug Brady when he comes back in the house. He will sit and play with him and constantly wants to hold him. Over a year now and the newness has not gone away like I sheepishly thought it would.

My kids were "supposed" to be four years apart so when this seven year age difference happened I was concerned there would be no childhood together for these two kids. Will they have the playtime together? Will they share the sibling-hood that I want them to have? When Brady will be Michael's age, Michael will be off working at an afterschool job and running off with his friends.

I am the middle of three kids -an older sister and a younger brother. We are all four years apart. When we were little, we played together. Over my childhood years, it was first my sister and me, then all three of us, then my brother and me. I don't think the "all three of us" lasted that long, because my sister was by then old enough to go off with her friends. We did have some fun, like hang my brother from the laundry chute at my grandmother's house. As soon as she graduated from high school she went to college across the country.

So then it was just my brother and me. We set up Fisher Price peoples, play baby wiffle ball in the backyard (I was Sammy Jo, the amazing pitcher), watch TV after school (1/2 hr of Tom and Jerry, sometimes a full hour of Charlie's Angels). When I got my license I would bring him with me to get movies or to hang out with my friends. He was old enough to hang out with us, but young enough to be the "adorable little brother".

But at the holidays it was just thre three of us. Having moved away from family when we were four, eight and 12, we had come to rely on each other in a special way. Easter, Thanksgiving and Christmas, when other friends visited extended families, we would be with each other and our parents, playing games, eating, watching TV, relaxing. Christmas Day we would wake up and have all day to open presents and play. We had each other to be with and to goof with. The year we all got radio/tape recorders, (the 8600) we spent the day taping each other and singing into the tiny built-in mic.

That's what I wanted for my children... the camraderie, the closeness, the playfulness. I wanted them to have the memories I have, that special bond. I worried for awhile that I wouldn't have that for Michael with Brady having WS. I am a nut. I know as Brady grows he will be nothing but a constant sources of happiness for Michael. He already is.

Update: Since switching to 1/2 Enfamil, 1/2 Calcilio a month ago, Brady's calcium levels have dropped. He went from a 11.6 to 10.8. Yeah!

Sunday, November 19, 2006

Someone told me the other day it's six weeks until New Year's. Egad. I can't believe in four days it's Thanksgiving. I have started my Christmas shopping - did a lot this weekend actually - and I love doing that. It's a season we wait for all year and then spins by horribly fast. As a kid though, I know it's a LONG season... always waiting forever for that jolly elf to slide down the chimney. I'm glad, because the anticipation is better than anything. But I have noticed as you get older, Christmas sneaks up, BAM! hits you hard, then disappears so fast you wake up and it's Valentine's Day.

I've been thinking a lot about that lately - life passing you by, children growing up fast, missing out on things because you're busy doing the mundane (thanks Lisa!). And while that is all true, it is also impossible to live by. You HAVE to clean the dishes or you will get some strange bacterial disease and die in the hospital. You HAVE to clean your room, otherwise you will slip on a crayon or shoe and hit your head and bleed out. You HAVE to clean the bathroom because... I won't even go there. SO, yes, it IS a matter of life or death for you to take some time and do the little chores while your child happily and quietly entertains himself or watches mindless TV. :) But I get the picture in whole and I do remember that my kids are only little once. Anybody who knows me can vouch for that.

We had a good weekend, going out for dinner for my mom's birthday - we hit a fondue restaurant with ADULTS only (thanks Amy for babysitting!) and it was a blast. Reminicent of a dinner in my youth when we ate chocolate fondue for dinner because the cheese fondue had burnt. The best meal ever! This meal was yummy but also fun - quite hilarious to watch my father fish around for his lost piece of bread in the depths of the melted cheese-filled pot. We also could deep fry vegetables which is totally counter productive since it certainly didn't make them too healthy. Our dessert was divine - two choices: a Turtle fondue (like the Turtle candy) and a hazelnut... yum...

I have managed to get a lot of toy shopping done, but I still have adult presents to buy. Brady is so hard to shop for and although he is already 26 inches tall I think Santa will bring him an Exersaucer. Some Exersaucers only go up to 30 inches, but I have come across a couple that go to 32. I brought down my old one and he really liked it. He was able to turn around and hit the little toys on the bench. I like giving him a new way of looking at the world, especially since I have to take down his jumper from the doorway. He does love that thing! (sigh) But his PT is VERY much opposed to it, since it can promote toe walking and tightens his already tight muscles in his legs. So, it is down and not to be put back up. Sigh.

Speaking of Christmas, while I know SOME people out there starting putting up their decorations Sunday (ahem, you know who you are!) we have in the past few years put our tree up Wednesday night and decorate it Thursday morning while we watch the Macy's parade. I am getting a little excited because it means the season is really here. A friend of ours put up his holiday light extravaganza yesterday, ready to light on Thursday night. And by extravaganza, I mean he should start to charge admission. It is done tastefully though, quite unlike Truvy's house in Steel Magnolias.

Sunday, November 12, 2006


I logged on this morning to the Williams Syndrome Association forum and found a truly inspirational letter. A parent of a newly-diagnosed child with Williams Syndrome had written in, concerned and frightened about the news. A parent of a 20-year old child with WS wrote back; this was his response:
Nearly 20 years ago, I was devastated when my daughter was diagnosed as having William's Syndrome. The label of mental retardation was frightening. All the visions of a 'normal' progress through life vanished.
Now, with the benefit of hindsight, my fears were groundless. My daughter has brought more joy than grief. Actually, the only grief was the initial disappointment of not having a 'normal' daughter. She is strong, perceptive, caring and loved by all who come to know her. Certainly, she needs adaptations to succeed, and some tasks are beyond her abilities. But, with patience and encouragement she never ceases to amaze us as to what she can do. She works part time, and has the respect of her co-workers. She saves her money, and is planning to travel to her favorite destination, Las Vegas.
I meet a lot of people in my profession and hear the tales of woe they tell of their 'normal' children. I can honestly say, that I have not lost one night of sleep for worrying about my daughter.
My only advise is to be patient, be patient and when you are frustrated be patient again. Above all, enjoy and celebrate every accomplishment. Thousands of others have walked in your shoes.

What a wonderful way to start my Sunday morning! (And, by the way, look what Brady can ALMOST do! Pretty soon ... )

Thursday, November 09, 2006


Brady's nutritionist appointment went REALLY well... in one month he has gained... drumroll, please... ONE POUND!! It's very exciting over here - the combination of Calcilio, Polycose (thanks, Amy!), brushing, and non-Reflux generating foods I think all had something to do with it.

I need to go clean, but thought I'd share this little happy news while I had a minute. :)

Wednesday, November 08, 2006

Slow and steady win the race

It's been a week... and I have to say the changes are definitely there. Brady didn't stand up and start walking with this new brushing program, but there were definitely changes that have coincidentally happened since we started brushing.

His alertness has magnified; his tracking with and without noise is perfect; his eating has GREATLY improved; his sleep schedule has solidified (I can say now having unbroken sleep that I was sleep deprived); he is reaching out for toys; he is making all the googly faces with his mouth, including biting down; and the list goes on that only a mother could tolerate. :)

I finally feel like he is "growing", that he is making milestones. His tone is still very low, but it is obviously getting better all the time. We're not "there" yet... I still am having a hard time buying Christmas presents because he doesn't really need anything. He still has the toys from last Christmas that he may actually be ready for THIS year. But it has rejuvernated me. I feel like we are finally moving forward a bit. With me, it really is the small things. I only need a little encouragement and it lasts for a long time (maybe that's why I'm Brady's mom!).

Tomorrow we go to the nutritionist for a follow-up; and since we'll be at Children's Hospital Brady will get his calcium testing. It will be the first calcium test since switching him to Calcilio formula.

Sunday, November 05, 2006

Brushing 102

Well it's Day 4 of Brushing, and I have changed my tune a little. I did go off schedule yesterday afternoon a bit, but then got back on. I am almost hesitant to write this because you know as soon as you write something the opposite happens...

Brady has always been a good sleeper, but sometimes broke it up a bit at night--- he'd go down around 5, sleep til 9 then go back to sleep around 11-12. Sleep til 5 or 6, eat something, then go back to sleep as long as I let him. One time it was til 11. I know, you're going to say to move his sleeping around, it's all schedule, but it was really about eating. He'd get up and eat. He eats the way the dieticians tell us to - six small meals, not three big ones. :) He doesn't eat a lot in one sitting, which can be a little frustrating when you are trying to gain weight.

Well, his eating his gotten MUCH better... he's eating his food much better now during the day, and now has been going to bed about 8-9 til morning. Last night, he woke up crying twice but I just shoved the pacifer in his mouth and he fell back asleep. I gave him some bottle around 4, then he went back to sleep. Still there now.

I mentioned before he seems more alert, but I also feel like I can finally visualize him walking and growing a little older before. I never could do that before. He was always such a "baby". We crack up because he's still so little and it would be really cute if he walked now, he'd be up to your knee, probably! :)

It's been a relaxing weekend, watching movies, cleaning up, Michael's last soccer game. Tonight I am going Christmas shopping with my Mohegan Sun winnings for a school fundraiser. It's at 6:30 tonight and we'll have the whole toy store to ourself. Yahoo!

Friday, November 03, 2006

Brushing 101

Well, we'll be on Day 3 of the brushing program today when the little cherub wakes up. He has not complained about it at ALL, which I figured since he seems to like the harder touch rather than the soft touch. He just kind of lies there and takes it, thoughtful. He doesn't even mind when I flip him over and he is on his belly while I do his back. He is pulling himself up really well now when he is like that, not complaining which is not normal.

Do I think it is working? Well... I do think that he is eating a bit better, eating more foods rather than formula. He seems more regimented going to sleep; definitely getting more alert by the day. His PT is really happy with his improvements as well, as is his Speech Therapist. However, before we started the brushing he was getting better overall, so I don't know if everything can be attributed to the brushing. I know that his OT said it works for some but not all. I do think it's such a minor thing to do that I will keep doing it. I think it also helps me staying focussed and on schedule!

I know he wasn't going to be the kid who got brushed then started walking two days later... he isn't even smiling yet so I doubt he has the muscle tone for walking. However, I was expecting to see some sort of developmental progress even though I know I shouldn't count on anything. I definitely think I do see progress... and whether that would have happened anyway, who knows.

I do think he is starting to get his own little personality - even though he still looks at you like you're crazy sometimes... then again, maybe it's only me he looks at like that :)

{Here's Michael and Brady on Halloween... Brady in his Lion outfit loaned by Cousin Jack, and Michael in his costume... he was Mike Boogie from Big Brother All-Stars. His shirt said "Chilltown" and "Dolce Vida". When he was trick-or-treating, people actually said to him, "Wow- you're Mike Boogie!" That's good he didn't have to explain his costume to everybody, just mostly to kids!}