Louisville, Here We Come!

Yes, we are joining the ranks of hundreds of other WS children and seeing the infamous Dr. Mervis in Louisville (Dr. Morris will be unavailable). Quoting from the WSA website, "Dr. Carolyn Mervis conducts clinical research studies primarily devoted to the cognitive processes in WS. Her team is conducting longitudinal studies of Language and Cognition in WS, as well as studies of language in very young children and the relationships between language, cognition and adaptive behavior in Williams syndrome."

I have read posts from other parents who have gone to see Dr. Mervis and most were happy with their meeting. I am looking forward to getting a little more insight into Brady and what I can possibly do differently to help him get the most out of life. We have been very busy so I haven't had time to think about Brady and I flying alone --with a baby on my lap in the plane! -- and staying in Kentucky for a few days but I think we'll be fine. I leave on Sunday and come back Tuesday, so it's not a long trip.

I will update when I get back ~ I promise!

Amazing words...

I actually have two posts that I have written but saving as drafts because I need to reread them to make sure they make sense... and then the day is over and here we are again. But I wanted to quickly put up an AMAZING editorial that was written by a WS mother who resides in Oregon. You can read her story here http://heartofafamily.blogspot.com/ on Nancy's blog, dated June 13, 2007. I cannot rewrite her words any better than she has done... it says it all. Thank you so much for sharing!

I will post more later ~ thanks for checking in!

We're Back! (said in a sing-song voice)

Yes, we are alive and well! And I do apologize for taking so long to post again. I have been keeping up with everyone on THEIR blogs, but have been selfishly not keeping up with my own. At first, there was not much going on.... then there was too much going on. Trying to decide what to put down first... it was easier just to put it off. And here we are, four weeks later.

First off, we ended up raising $2,000 dollars from Brady's Walk -- how exciting!! I am just about done writing the article to put with the picture to send to the WSA. I will be sure to post a copy of that article when it comes out in the newsletter. I was so amazed at all the people who donated and/or walked... people who didn't know Brady but just wanted to help. I am excited to make next year's event even more fun.

Secondly, we're in baseball mode here with our eight-year-old -- two games a week and two practices a week make for a very busy week! He's having a great time and the nerves of steel we parents have in the stands is incredible... it's just a game, right??? LOL We're working on a baseball scholarship for this kid...

And last but certainly not least, Mr. Brady. Brady has been doing AMAZINGLY well - his gross motor skills have improved greatly, his cognitive skills have improved, his facial features have gone CRAZY - he smiles now purposely, a twinkled-eye one and a scrunched up face one that makes you just sigh and smile back. Although he doesn't smile on command, I no longer have the fear that he is uncommunicative. It did take longer than anyone I have read about, but I am going to make sure that I post how long it took in the bios on WSA and WF so some other mother out there doesn't freak out when her child is 9 months old and not smiling. Brady always had other ways to show he was excited - he flapped his arms and wiggled his body - and I see it all coming together now.

Although he has gotten taller, he has not gained the weight his pedi would like to see. His nutritionist is on maternity leave and I have emailed her privately to see what she says. The thing is, Brady has been the most responsive and happier than ever, so I am very hesitant to change his diet. His sleeping is great. His playtime to great. He's rolling all the way over around the room now. He is eating more baby food than before, which is ironically part of the problem - he gains more weight on formula. Go figure.

Another new thing is a class he is taking - a five-week Signs class. He and his friend James (who gets an A++ in the class - at 11 months old he probably could talk to Helen Keller) are taking a class run by the same instructor who taught them yoga. It's a good class, plus we got all the materials with it, a DVD, CD and some books. On the first day the other mothers were gushing how well Brady was doing the sign for milk (picture milking a cow with your right hand), when my friend Angela and I just knowingly smiled at each other - Brady has always constantly flexxed his little fingers in and out since Day 1. I don't think milk has anything to do with it! At the last class, they were excited he was doing the sign for stars (wiggling the fingers). ;) Maybe Brady has been talking to us since birth and we haven't figured out what he's been saying!

Some of the basics are good for them to know to help communicate - all Brady's therapists thought it was a good idea for him to take the class. Here's a site to aid anyone - http://aslpro.com/cgi-bin/aslpro/aslpro.cgi. Some of the ones they start out with are please, more, milk, play, eat and dog or cat if you have one.

We're all very excited over here also because we just learned the WSA conference next year will be in Anaheim, California, a mile from Disneyland. We were planning to go to the WSA conference no matter where it was, so this is just a little bonus to be near something so fun. I hope all the WS buddies will be able to go!

Okay... that's probably it on the update. I promise I will not go this long again! Brady also got his first haircut, which I will post the pictures next time. To my surprise he looks so much older. I know that's natural, but since he is still so baby-like I didn't think he would. Oh... one more pic of the famous lip - he is very good at giving it. I think he tries to smile when he sometimes does this. It makes me smile, anyway! :)

Brady's Walk 2007

A few months ago, another WS mom and fellow blogger Nancy posted she was getting ready to participate in Sophie's Run, an event to help the future needs of a WS child and to raise awareness about the syndrome.

A friend of mine, who also reads Nancy's blog, suggested we take our two little rugrats for a walk on the same day that Sophie's Run was scheduled, to participate "in spirit" since we couldn't make it to Oregon for the real thing. Well, that conversation lead to another about a few friends walking with us, to another which was "my husband will pay me to leave the house to walk", to another... well, long story short, we had 28 people and four babies in strollers walk 5K at a nearby park. So far, we have raised over $1,400 and the donations keep coming in! The money this year will go to the Williams Syndrome Association.

We had a glorious day -worries of rain disappeared as the sun came out and walkers began shedding their sweatshirts and jackets. We had kids on foot, bicycle and scooter, and many with big blue balloons attached to their handlebars and strollers. The path we took hugged a pond with glorious scenery. After the trek we headed to Angela's house for our "after party" and feasted. It was a beautiful day.

I can't begin to explain how touched I am that friends and family -- and friends of friends of friends! -- took the time out to help us with their support. There were nieces, nephews, sisters, brothers, grandparents, friends and co-workers who walked and/or donated. Everyone has been extremely generous and kind and helped out in some way. Thanks to Denise for designing the shirt logo and to Angela's family for allowing us to have our "after party" at their beautiful home. And to Angela, a special thank you since this event would not have happened without her prodding, help and commitment. No wonder Brady is named after you! ;) LOL

During the Walk, I marvelled in the support that Brady had in just our little section of the world... the lives he has touched. (Our youngest walker not in a stroller was six, our oldest was 70.) I also had with me the thoughts of our other WS friends. In the video, you'll see Erik's red bracelet on my wrist as well. I realized I would never be in this WS challenge alone - I had people walking with me to show their support, people donating to help out, and people I turn to across this planet for help as well; hopefully they realize I am there for them as well.

I am so thankful for everyone.. and as I sit here and write this Brady is next to me and smiling, as if he knows what everyone has done for him. Rascal Flatts has said it best, "More then anything, My wish, for you, is that this life becomes all that you want it."

P.S. This is my debut as a movie maker... so I know I will make a better one next time! Thanks, Nance, for your help!

It's been awhile since I have posted, although I keep up-to-date with everyone else's blog. It is so selfish of me, I know; and when others don't update their blog, I am always, "What's going on over there? WHY haven't they written anything???" Poor Nancy, you must get my mind waves going a mile a minute because I know I'll get some super-dooper brain lesson from you and if your entry isn't new, I am trying to tell you telepathically, "Let's go!" :)

There have been reasons why I haven't updated. First, it was because I felt like I had nothing to say - everything was pretty much going as usual and how many times can I say, "So, we're trying to help Brady gain weight; he's moving along fine, slow and steady, blah blah blah." And then it was because there was too much going on and I couldn't quite decipher WHAT to write.

I do feel a change in the air, though.... a small but steady shift in my life that exists although I can't place my finger on it. I am slowly feeling a break from my normal routines, a break from friendships that I can't determine the causes, a realization that life is about to change somehow.
It is very odd and I can't really offer anymore explanations. I just don't know. Maybe it will all unfold in front of me and I will see what life will bring me. Maybe I am just getting older.

I have had a few "a-ha!" moments. I have realized that Brady is on more of an uphill path than I see some of the other WS babes out there. It doesn't make me vengeful or unhappy for the others, just a little more sad for us... which I think is very hard for me to acknowledge. I am always the one encouraging and although I do acknowledge things really bite sometimes, I still have that inner positive attitude.

I have also realized that raising a special needs child will require many conversations with my eight-year-old. He and some friends were talking the other day and said someone was "mentally retarded" and I instantly went into defensive mode explaining that it wasn't funny and it is not something to joke about. Later on I talked to Michael when it was just the two of us and asked him if he knew what being mentally retarded meant. I know he is just talking the talk all kids do, that he isn't trying to be mean. So we chatted. I said how it took some people a longer time to do things but it was okay, everybody goes at their own pace. He understands that Brady is delayed in general, and he pointed out how Brady didn't walk yet or even crawl and our friend's baby was running around the hosue who is a few months younger. He still wanted Brady as his brother, no matter what.

Then he matter-of-factly asked me outright, "Is Brady mentally retarded?" I hesitated because I don't really know how to answer that. Is he? I know he has Williams. I know he is delayed. I know he has SVAS. I know he has radioulnar synostosis. I know we have no idea how much help he will need in school yet. Is this a label for my eight-year-old to have about his brother? On the other hand, Brady seems "normal" to Michael, so would having this label be a good thing for Brady to have while still seeming "normal"? (Did you follow that?)

So I half-chickened out. I said something like, "Well.... kind of, but because he has Williams he has delays and he may need help learning." Michael was fine with that and didn't ask me any thing else, although we talked for a few minutes more. I think he mulled over that conversation in his head though, because the next day when I was taking him and some friends out he said, "Did you know my brother's mentally retarded?" I almost hit the brake. I explained to him later on that while we aren't secretive about Brady's Williams', we don't outright tell everyone we walk into. I told him, "We don't say, 'Hi, this is my son Michael and he's allergic to peanuts.' " He seemed to understand that and I have to remember he is only eight.

And on the other hand, I met a woman yesterday on the ballfields whose son has PDD-NOS and while we chatted about some of the similiarities between her son's childhood and Brady's, her son came up three times to get money for more food at the concession stand. She rolled her eyes and said, "Yep, he had feeding problems!" Obviously not anymore! He also didn't say his first sentence until he was four... now he didn't keep quiet! She said, very profoundly, "Just to show you, you don't need to worry about everything... it all happens in their own time." I don't think she realized she was being profound, but I did walk away a little lighter.

Happy Easter!

Stuck

For it to be April 3, there should be birds chirping, sun blazing and bits of green poking out of the ground. The air should be warm and smell like rain. WELL.... here in New England it is cold, drizzly and gray... not light gray but more like gray-to-black. We had a small peek of spring last week but we're back to a wintery mode. All we need is another April Fool's Day snowstorm like we had 10 years ago to top off the week.

It's like we're in a standstill -- not quite spring weather yet, but too warm for the sweaters. We are in a plane inbetween winter and spring. Coincidentally, that is where Brady is too. He was having a gusto end-of-winter, eating food pretty well, sleeping on a schedule, learning new tricks, sitting for a good amount of time. Then we went to the nutritionist who was happy in general with him, but we're still trying to add in more calories. Since then, he has been not eating a lot of food and not drinking a lot of bottles. I will probably find out in another week or so that he has an ear infection or strep throat or something... there are no symptoms but ironically this kid never complains, just doesn't eat! Of course if I used not eating as a symptom of an illness we'd be at the doctor for fruitless appointments every day.

If you looked at Brady, though, he's not a skinny little peanut. He seems very proportionate, just small. He is growing length-wise, and his cheeks and belly jiggle when he bounces around. He is more active, which also accounts for not gaining weight really fast. Argh - seems like a nevernending cycle.

PT-wise he's doing pretty good, still making strides. I am hoping he will be able to do more when the warmer weather hits and we're outside more.