Sunday, July 29, 2007

We're home!

Coming home from vacation and reading up on everyone's blogs has left me .... EXHAUSTED! I had decided to read up on everyone and then post myself, but maybe I should have done it the other way around! :)

(Above is Brady getting his first Lil' Webkinz - a hippo we named Seymour after seeing Little Shoppe of Horrors our last night at Sebago.)

We just got home from our vacation - we went to the Point Sebago resort in Maine for a week. It was heavenly! We brought our nephew, Adam, who is the same age as Michael, so they ran off and did their own thing all week. The resort is packed with activities - 9 am Kickball, 10 am Dodgeball, 11 Flag Football; Arts and Crafts, plus the beach, arcade, riding bikes around and kids galore. The people running the activities were young students, maybe college/high school age, some foreign exchange students. The kids loved them - they were energetic and fun to be with. I would highly recommend the site for anyone with kids. Plus they had adult activities too; comedy shows, cruises for all, golf, etc. The week was relaxing and fun... just what we needed!

Now, Tom and I are those people who go on vacation and get sucked in to "taking a real estate tour". In Aruba we did the tour and got a free Jeep rental; went to the Cape and got a free dinner; here we just loved it all so much we checked out what resort cottages were for sale. Pretty good deals, plus the golf cart to ride around in to boot... if we had a little change in our pocket we would seriously consider it. Tom skis, so we would take advantage of winter months; Tom and the men and some women in our family golf, and they have an 18-hole golf course; the activities they have for the kids is fabulous; the area is so self contained and secure I would feel comfortable with Brady there as he got older.

That was one key element that Tom and I mulled over: Tom mentioned the security and since Brady would basically grow up there over the summer years, he might be able to work there in some capacity as he got older. When he said that out loud, I suddenly realized what adjustments we would be making in our lives. I always knew that the future is uncertain in terms of Brady's living and working arrangements, but that is so far off in the future, I don't really think about that. (I am concentrating on him walking and talking first! :) ) But it occurred to me, how interesting that although everyone changes their lives for their children, the differences Tom and I need to make in our lives is completely different from other people we know. For example, Brady has a heart condition - do you notice how many signs say "Do not ride if you have a heart condition"? Does that mean we don't go on a vacation to an amusement park when he's older because how unfair is that - look, but don't ride!

Tom mentioning that having a safe haven for Brady would be ideal just kicked it in a bit. I tend not to worry too much about what *will* or *could* happen in the future, because it is all so uncertain anyway, and, like I said before, how can I think about that stuff when I am trying to help him learn to hold his bottle and crawl? You can always worry about the future - but when the present has so much going on, who has time for that? It's also so easy to think of the worst, and I don't have time in my life to depress myself about Brady's far-away future. I can only cross each bridge that I come to... I am not looking into finding bridges to cross, or worrying about the next bridge.

(Above right picture - Brady's famous lip. Am I embarrassing him, do you think? LOL)

Wednesday, July 18, 2007

Hanging with Clare ~

We've been in birthday heaven over here - Michael celebrated his 9th this weekend, although I am SURE that 9 is the new 13, because he certainly has that teenage attitude. Am I just getting older and not able to tolerate the young kids, or are kids growing more disrespectful in this day and age? However, I am glad he still has his love for Brady - and Brady can't take his eyes off of Michael - from the second he enters the room to when he leaves.

Brady and I went to visit Clare and Teresa last week - only a hop, skip and an hour ride and we were there! Big brother Jamie was so helpful, asking if he could give a toy to Brady and sat with him (at one point sat in front of Clare!) and little two-month Simon was a cute little bug, hamming it up with his smiles.

Two-year old Clare was so adorable - not shy whatsoever as she reached out to me so she could walk over. I got hugs and kisses and big smiles; and words that were as clear as day - "bubble", "baby" , "Brady". She was on fire! She scooted right up to Brady and they seemed to gaze at each other, connect in some quiet way. Teresa posted some great pics on her blog, but here is my favorite, on the bottom left. Kinda tells it like it is! She's certainly giving him a good talking too! :) I'm glad to see he's paying attention to the women in his life!

It was so great to hook up, Teresa and Shawn were so hospitable and we had a fabulous lunch. It was reassuring for me to meet Clare and see Brady isn't as far behind as I keep thinking he is. I need to readjust my thoughts on his accomplishments. I know we'll see each other again soon, and I look forward to it.

Monday, July 09, 2007

What kind of mom are you?

An article was published last weekend in the New York Times about Williams Syndrome that gets right down to the nitty gritty :

Accompanying the article online is a video of a 19-year-old girl with Williams. It fascinated me to hear her talk; to discuss her daily routine, her joys and dreams. Just as I watched the six-year-old boy with Williams in Louisville, I was mesmerized with these people whom I have an instant connection to, knowing my son may one day be like them.

Something even more interesting to me was seeing this girl's family in the video, particularly her mother. I wondered what kind of mother she was. Did she think she was the "right" kind of mother for her daughter? Did she think that she would one day have a child with special needs? There are women out there like that - I have heard people say they always "knew" they would have a special needs child. They knew they would have this "calling".

I did not have that calling. It never occurred to me I would have a child with special needs. It seemed to fall in line with the "other" parents... you know, "other" parents had sick children, "other" parents had mentally ill children, "other" parents had miscarriages, couldn't get pregnant or got divorced. As I got older, I began to notice that I knew some of these "other" parents... I know people who have sick children, who have children who have died, who have had miscarriages, couldn't get pregnant or got divorced.

I always felt I was untouchable, nothing bad could happen. Even when I took all the precautionary, telling tests you take when you're pregnant because I was told to; it never occurred to me they would come out positive. I was never worried when it came time to deliver my sons - I just thought it would be okay. I still think like that, most of the time. I think I like having that kind of attitude, it makes more things possible. However, it does throw you off a bit when you end up with something not in your "plan". And as I get older, yes, and wiser, I realize there is no "plan". You need to kind of make it up as you go along.

Am I the "right" kind of mother for Brady? Yes, because he is my child. But beyond that, I am filling in the blanks as we go along. I read about the mothers of WS kids online and I see they are not so the "other" mother as I once thought they would be. We are all so very ordinary. Does it scare the non-WS moms? It could happen to her, it could happen to me. Are we "chosen" moms?

Keep your hands where I can see them, mister...

Here is Brady in a common stance of his - arms up. I am always telling him, "Hands down!" and most of the time he listens... we're working on it.

Friday, July 06, 2007

Where in the world is... Kerry's update

I can no longer use Michael's baseball as a reason why I haven't posted, nor the two impending babies birthed in our family, or even Tom's crazy schedule over the past month... the waters have calmed and here I sit in front of the computer. (Is that Brady giving me a "Loser" sign on his forehead??)

Before I went to the WS clinic in Louisville, I literally didn't have a notion in my head. Things were going relatively smooth. Brady was progressing along, there were no bumps in the road or doctor appointments. (How many times can I go on about Brady trying to gain weight?) A few things I fretted about worked themselves out, or I chose to ignore (ha) or I realized that at 38 I have been blessed in my life and don't need to worry about stupid inconsequential things.

Then we went to Kentucky, the Braidster and me, to see the all-powerful Oz, aka Dr. Mervis, Williams Syndrome expert. I read online in many forums and blogs about what great inspiration and guidance she can give a parent regarding their WS child and thought, "What the heck - we'll email her" after many conversations with Lisa about her trip last January.

And it was a good trip too - Brady did well on the plane, well at the clinic, well at sleeping in the hotel. I am still a little dumbfounded why there is not much built around the University of Louisville in Kentucky. Wal-mart could make a killing just putting one in walking distance of the school. Luckily I was only there two nights, since the only two choices for delivery were a Chinese restaurant and Papa John's (oh, Domino's too, let's not forget!). The campus itself was beautiful, very inviting. Freshman orientation was going on when I was there, so the campus was not completely void. Students taking summer classes also strolled around, but it was hardly too busy.

Brady took part in tests conducted by Dr. Mervis, her assistant and grad students, as well as an ongoing baby cognition study with another professor. Dr. Mervis exclaimed how easy going Brady was throughout the two days we saw her; he seemed to just go with the flow, not overly anxious or disruptive in his schedule.

In general, Dr. Mervis agreed with the work Brady's therapists are currently doing, which relieved me immensely. I figured she's seen over 400 WS kids, and his therapists have only seen him with WS, so I was glad to know they were on the right path. Dr. Mervis did recommend more OT/PT, since Brady was still behind in controlling his pincher grip among other things; so his PT Lisa has added a third day beginning in August. Dr. Mervis also recommended playing such games as Peek A Boo, Patty Cake, rolling a ball and So Big as they help with all levels of cognition and coordination. She said more books are good for him, and pointed out that since he can't point yet, when he hits the page of the book to reiterate what he's touching ("Oh, look at the doggie"); also repeat back to him anything he says to help establish a conversation, so to speak. Baby books with photographs are also better than cartoony books.

Although Brady did some tasks age appropriate, Dr. Mervis acknowledged that he seemed to be a bit behind other WS kids his age. However, she also realized that the tests he was taking were underestimating his abilities because his muscle tone prohibited him from doing different tasks. For example, they present a task to him three times; if he can't do it by the third time they move on. Because his muscle tone is so low, he couldn't do some of the rudimentary tasks, although he could do the next step of the task, but they wouldn't get that far since he failed at the beginning. (If he can't pick up the book, he can't show him he can read it - not that he is reading books but that is the idea. :) The idea that there was more going on in his little head than he could do was already acknowledged by his therapists, so, again, I am glad we are all on the same page.

The tests Brady did were quite interesting and I was a little surprised by the little man and what he could do. I have definitely been underestimating his abilities. For example, he took part in a sitting study for all babies. They just wanted to record how long he sat. I explained he will sit, but it would be for a very short time because he gets wobbly quickly, or throws himself back to roll around. They said it didn't matter even if he only sat for 10 seconds. So I put the little bugger down... don't you know he just sat there. And sat there. And sat there. Stared right up at the docs. The professor and the grad student looked at each other and then me and said, "Well... we weren't expecting this from what you said." Me either! That little bugger just sat there even after she said time was up.

And then of course he chatted away at the mirror, tried to turn the pages of a book, kept glancing at Ella the assistant for her reassurance with a noisy toy (Dr. Mervis called it "social referencing" and was very pleased he did this.) He played with toys, transferred from one hand to another... quite the busy little bee!

One of the major things we learned was about Brady's habit of bringing his arms up when he is startled. It is a reflex babies have that they outgrow. His therapists have said he hasn't outgrown it yet, which Dr. Mervis reiterated, but also stated that it is something he should have by now - that it is NOT something common with WS kids. That is important to know, since some things are common with WS kids and will work out over time, but this isn't. Brady's PT feels that once his arms and shoulders are stronger he won't do it anymore. In the meantime, we are checking in with the pedi and Dr. Mervis wants us back in January to see Dr. Morris. Lisa - let's coordinate this time!

Besides learning to not underestimate my son, I felt that I learned a lot as well. The relief that we are on the right path was worth the airfare alone. I did meet a six-year-old WS boy and his parents there as well. I spoke to the mom at great length, although I think I was rude and watched her son the entire time I was talking to her. He was so adorable, and what I am sure Brady will look like in five more years. The hair was the same as Brady's and he had glasses, too. He was such a character and I was in awe just watching him. It was a bit emotional, but more about how happy he was rather than his trepidation walking down the slanted driveway.

I did go to Louisville with a question about weight for Brady. I half-jokingly told Dr. Mervis I wanted her to give me the magic number of ounces Brady should gain in a month. You know, I am fine about him being developmentally behind right now (he rolls around like a gymnast now, although I remember wondering when he was going to do that!) -- it's the scale that drive me crazy! Brady gained nine ounces in this past month - which is a"Yeah!", but, like I told his pedi, I cheated. I cheated by giving him only bottle for the past three weeks, since he gets more calories from the formula than food. Dr. Mervis said as long as he gains (he's never lost weight) and is on his own curve we shouldn't worry. This is not her area of expertise so she couldn't really give me more advice than that. But, the pedi and I talked and I said although we'll be back next month for the weight check, I was going back to the food intake and leaving him there, even if he only gains five ounces like the month before. Brady's nutritionist comes back from maternity leave in August so we should be able to have more options then too.

Oh, and by the way, Brady has been doing great - he started combat crawling, slowly but surely, we just got him to start clapping this week, and he is FINALLY trying to put Cheerios in his mouth, although he keeps spitting them out. Besides adding another PT hour a week, he will also have an educator once a week whose job will be to play with Brady, and do some of the things PT and OT should be doing but since they are still workiing on his muscle tone they can't right now. It adds another hour for him, but I am excited since he is doing so well I know he will really thrive.

Thursday, July 05, 2007

Welcome to the world....

... little Cooper Robert, born June 15 to my sister and her husband. He is the fifth boy in their family (almost a baseball team here)...

... and....

... little Natalie Anne born to my brother and his wife on June 22. She has an older brother, Jack, who is two. She is the FIRST granddaughter in our family, after eight boys. Needless to say, she has many pink items of clothes.

Look how big Brady looks now compared to his two little cousins!