Just a Quick Note...

...about Brady's visit with Vicki, his Speech Pathologist. She came this morning and started working with Brady and I asked her about his lack-of-a-smile. He's been doing different facial gestures, but we're still lacking that all important one! She said it's because he has low muscle tone, which is common with WS kids. You can see it in his cheeks - they droop (I thought they were just chubby!) - and at rest the corners of his mouth turn down. We can help him out by massaging his cheeks. He will also gain strength by eating, which of course he hasn't been having as much food as bottle in all this heat we've been having. You can see in the picture from two entries ago.

Oohh... a Camping we will go!

We went camping for a few days with friends in the White Mountains in New Hampshire.. what a great trip! It was about 20 degrees cooler and beautiful views all around. After we got there, the site was put together pretty quickly then we all headed down to the pool. It was a gorgeous pool, with a wide staircase and two water slides amidst a "sunken" pirate ship and cavern. After lotioning up Brady with the 50-proof we headed into the water. Brady, donning his camouflage hat, swatted at the water and leaned forward to drop his face in it. If he got too much in his face he would go cross-eyed and shake his head... never crying!


Brady was a great camper, sleeping when he was supposed to, and loved sitting and watching the fire. He was mesmerized by the flames. He did great while we were making s'mores for the kids. All and all, a fabulous few days. Tom still has the rest of the week off so we're doing a few days trips and then giving him some time to play golf.


In other news....

I have noticed Brady is getting a little bit better on a "schedule". I had no problems getting Michael on a schedule but I'm beginning to think he did it himself, that I had nothing to do with it! It was so hard to get Brady on a schedule at the beginning because he was eating on demand so that was pretty much shot. Now that he's doing better in that department, I'm thinking he should be settling in for the night after dinner time, maybe waking up once or twice to eat, but that's it. Right now, he does settle in for the night but it's usually with us in the living room. He'll stay asleep amidst all the noise; in fact I think that's what KEEPS him asleep.

He's looking pretty big in his infant car seat.. I hit some great Children's Place sales today and bought the next size up... how exciting!

A lot has happened over the past few days that I haven't had time to post. Let's see if I can remember it all...

On Tuesday night Brady rolled over to his stomach - this time it was seen by a REAL person! (Brady has rolled over two other times but not in front of anyone.) Tom was lucky enough to see this. He rolled over, then laid there and went to sleep. (above) What a man!

Brady has been growing and maturing in all aspects. He has constantly more eye contact, and his 3-6 month clothes are getting a little tight in the length. He seems to grasp things more, and definitely moving around a lot as well.

We went to the Opthamologist yesterday, as was requested by his geneticist that he see one before he turned one. His eyes also turn in sometimes as well, so I was very excited to go to see if he had trouble seeing or what was up. His eyes have gotten better over time, though; since he has been focusing more on things I am noticing his eye turning in a little less. The doctor has suggested to patch his left eye an hour a day to strengthen his right eye. We'll go back in eight weeks to see if this has helped. He may need glasses at some point, and although having glasses is common with William's, my side of the family is also sight-challenged! We also had a blood draw to check his calcium levels while we were at the hospital. After, my mother, Michael, Brady and I hit the Country Buffet restaurant... Michael likes to wait on us. It's great, my mother and I can talk and tell Michael to get us a Pepsi, chips, or whatever! I highly recommend it if you have an eight-year-old.

And to top off the day... we went to Bon Jovi with Nickelback opening. It was a fabulous time! I did not tease my hair big as I threatened to do, but there were definitely some '80s songs blasting through. (Thanks Mich and Sam for a great time!)

The Gift: Lessons Learned

I met up with my girlfriend last week whom I haven't seen since Brady's christening. She and I have been friends since sixth grade (we did have a year or two in high school that was, well can we say very high schoolish and we weren't that close. What we can see when we're older!). She is someone I can count on to be truthful, yet sensitive and I have always admired her for that.

We sat in her den, talking about our kids when the subject turned to William's Syndrome. She was asking questions about Brady's issues and what we've been doing. I responded with my usual about delays in toddlerhood and probably needing some help in school; healthwise we are dealing with heart issues that we are monitoring, keeping an eye on his weight, and maybe some eye issues, we find out this week. I gloss over the topics that I don't like... 55% of the children examined were found to be severely mentally handicapped, 41% were moderately mentally handicapped, and only 4% of the children had average ranges of ability... Some live in group homes with other adults with a variety of disabilities, and some prefer to stay at home with their parents.

There it is again... that little voice that is at the back of my head that reminds me that my child will never be like his brother. That he will struggle with abilities others take for granted. That voice that I squash when I talk to people about his future. It's a part of William's that I don't like to discuss. Funny, I have no problem talking about his heart condition, which is ten times more important and serious than whether or not he works behind a counter in a drugstore rather than becoming a brain surgeon. I know this. I know what's important. I know in the front of my head that him being a happy person and becoming a healthier person is more important. But it's the little voice in the back that nags me. In my solitary moments of non-optimism (I just made that word up, but it so fits) I am reminded of what he may not become.

And as I sit with my friend, I feel as if I am not being fair. I know I will have my non-optimism moments. We all secretly like the fact that with William's there are no absolutes, there are no glass ceilings. Each child is diffferent in their abilities, so some will excel where others do not. This way, we can all say to ourselves, "My child will be the one that isn't affected as much."

But then I came across a scrapbooking layout in a magazine recently. It was made by a mother whose eighth child had Down's syndrome. The mother's journaling went something like this: "We've reflected a lot on Joseph and his Down Syndrome since his birth. After all the thoughts, prayers and pondering, the one simple conclusion we've come to, the one truth we now believe with all our hearts, is simply this: Joseph's condition is a gift. For Joseph it means he will be free from so many cares in the world. He will live out his life with no guile, with no unkind thoughts. Our gift is that we have the joy of this little angel in our midst. It makes all of us want to be a little better, to reach a little higher, to love a little deeper, to be a little more grateful."

Wow. Could not have said it better myself.

The Team is Set

Brady has been in a little growth "spurt"... he's doing his funky faces, moving all over the place (everything but the actual rolling over - although I think he did roll off the couch but I didn't technically see it), turning towards people talking, and really watching people and animals (that's him with his friend Betsy Beagle on the above). His friend Kitty was pacing back and forth watching him today, and Brady followed her every move, talking to him and moving towards her. He'll sit on your knee and ride it back and forth like a horse, grasping his tiny hands around your fingers. His 3-6 month onesies and one-piece outfits are getting two short on him, although he has no butt or waist, so I'm not sure how he'll fit into the 6-9 month clothes. Already having his bottom two teeth, his upper left tooth has broken through and the other top tooth is just about to. It seems like we've been waiting for awhile for him to move forward, and I think we're finally getting there.

His PT Lisa excitedly told us the other day that we start OT with Tara in two weeks, and Tara will be the same person we'll be able to do swim therapy with. Lisa was thrilled we're matched up with who she wanted us to be set up with and feels we have a great team for Brady. Along with Vicki, his Speech Therapist, Lisa and now the new OT Tara, we are set for awhile as they go to town on Brady.

I am always hearing the same comments from different people ... what a difference in the quality of life Brady will have because he has started his Early Intervention so early. Ironically, it was because he had a heart condition that he was diagnosed so early. What a double-edged sword. Without seeing the cardiologist, we might not have known for awhile what was up with him. I constantly read about children who were diagnosed later on -- when they were years and years old, not months, and it makes me feel for those parents who KNEW something was amiss with their child but didn't know what it was.

QUICK NOTE: About Lessons Learned entry

I didn't realize what gate I was opening when I wrote the entry on July 17 about Lessons Learned: True Friendships. I have received emails and calls about people apologizing for not being a good friend. Oh my!!! Quick note: if I haven't spoken to you in awhile that doesn't mean I don't think you are being a bad friend! I know there are people I can count on regardless of when I last spoke to them. There are people I will drop things for and listen if they called me after not seeing each other for awhile.

I certainly don't think that my family is more important than anyone else's (except to us!) ... and I certainly don't think that the idea of true friendships relies soley on favors or constant contact. I had friends say to me they understand where I was coming from when I wrote this entry because they too were disapointed by a friend or family member.

I appreciate all that people have helped us out with regarding Brady... big AND small. I do value all of our family and friends and know how lucky we are to be blessed with so many caring individuals. Thank you!

Quick Update: A Great Day in the Neighborhood

Today Brady had Speech at 9 a.m. (he's studying Spanish... hahaha) and Physical Therapy at 11 a.m. Brady was sleeping right up until Vicki got here at 9, and though usually he wakes up and stays up for awhile, today he just wanted to go back to sleep. So she was able to only work with him a little bit, massaging his gums with flavored gloves and gently massaging his cheeks. We were able to have him track a bit, using Michael as his focal point. He will always watch his big brother!

I told Brady to sleep for that hour inbetween, but he lounged with half-open eyes instead. Right at 11:01 he crashed, just as Lisa came in. No prob - she stretched him out while he slept, and when he woke up later on she worked him - sitting, rolling, standing, etc. She said he is doing great and really progressing each session - yeah, Brady!

We're all very excited to go to the Opthamologist next week - I don't know how they figure out what babies can see, but hopefully they will have some answers with Brady. He can definitely focus, but his eyes go inward sometimes, and sometimes he tilts his head and looks up, like he's trying to see you better or something. We'll see!