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.