Thursday, March 27, 2008

3.27.08




In the time since our last blog, we've settled in to our new house, and we've found more and more reasons to be happy we moved to Baltimore County. For one thing, now that it's Spring, Cal loves having a back yard. But we are also finding the services in Baltimore County to be great - not only has Cal had regular home visits from a PT and an OT (and now even a teacher!), but the Baltimore County Public Schools Infants and Toddlers program sent a team from their Assistive Technology department, who found switches he can actually operate with the very limited strength in his hands, and provided a laptop (!) with simple games, animations and books on it, so that for the first time he can actually experience cause and effect firsthand. He is VERY into it - the delight on his face when he can press a button and effect a reaction is amazing. For the first time he can turn the "pages" of a book by himself. For the first couple of weeks he called it "my imputer." One day, not long after he learned to call it by its proper name, he was playing a game (press the left button to make a butterfly move from left to right, them press the right button when you get it all the way across and a song will play) and he said to me "dada, computer is ... like a room," an insight from him that completely blew me away.
We are also pretty sure Callum has an imaginary friend, named "Doop-doops." Sometimes Callum speaks as Doop-doops (for example when we are feeding him something he doesn't want to eat at the moment: "Doop-doops NOT like fruit"). More often, he speaks to Doop-doops, sharing an insight on a developing situation, or issuing a warning ("be careful Doop-doops!").
Right now we are back in Mississippi, at what couldn't be a more ideal time of year. The weather is fantastic here after a chilly first couple of days, and we've been out in it as much as possible. Callum loves to be outside and asks to go out at every opportunity. There is a porch swing here at the farm and he's been loving it - swinging with him on my lap doesn't really work, he's just too tall (38" at last measure) and there's no good way to support his head, so most times he lays supine and we swing him back and forth and he looks at the sky, the trees, the mural on the side of the barn, anywhere and everywhere, and literally shouts with joy. His imagination is also in overdrive, so he also issues warnings, laughing all the while: "look out dada! a monster! look, look, in the forest! looks like a ... elephant!" and so on.
We are so happy to be back here at Mill Creek; Marjorie and Coleman welcomed us back and it really feels like a kind of homecoming. They were kind enough to let us into the farm enclosure on Monday afternoon so Cal could see some goats and deer up close, which I think really captivated him because now every day when we pick him up from therapy, he says it's time to go see some goats.
In the months before this trip, thanks to a bunch of factors - from our big move out to the suburbs, to an increased work schedule - I wasn't able to keep up the home program of CCDT nearly as much as I should have. It was interesting to me that Leyan, the cranio-sacral therapist who sees Cal pretty much weekly, noticed a difference in him even though she didn't know he wasn't getting the CCDT as regularly as before. Not a decline, just a change in his flexibility and physicality. So I am extra-glad to be back here and I feel like even in four days of CCDT there is a difference, he seems to have greater vitality and is way more expressive, particularly with his arms. And there is definitely more to this than my guilty conscience trying to assuage itself in overdrive. There is always a little push and pull in my mind about the CCDT; I know it's the best exercise he can get, the most effective way for him to develop muscle tone, because I've seen the benefits. But I can't quite allow myself to imagine that it will reverse the effects of SMA (of course nobody is claiming that it will, but we refuse to rule out hoping for that either). It's a little nuts when you let yourself think too much about it.
Unfortunately, his favorite therapist, Kalisha, has moved on from Futures Unlimited, but though we were initially disappointed, he's still getting great therapy and he's perfectly comfortable with Caroline, the new therapist there (he pronounces her name "Caro-lawan," which makes us smile since "lawan" is Callum-speak for "lion"). He is happy to see Rose again and he even asked Susan Snapp for a "zerbert" (her family term for what we would call a belly-fart or raspberry).
He is so communicative these days, so verbal. His repertoire of songs is ever-growing, as is his vocabulary and library of quotes ... he's rediscovered the Very Hungry Caterpillar and he can almost recite it from memory. The downside of his new expressiveness is that he's very clear about his displeasure when we leave him for the therapy, and he's very clear about what he'd rather be doing, but after the first couple of days he's settled in again just fine. There is a 1-way window in the therapy room and a baby monitor out front, so we can watch and listen without him realizing we're there, and the difference in his behavior when he knows we're there vs when he thinks we're gone is striking - when he knows we're there, he can be so dramatic and insistent, and when he thinks we're gone, he chills out pretty quick and just starts talking and singing. That's been true since we first came here, but now he's much more eloquent about it all, and when he's unhappy, it's harder to take it in stride. We have to wait in the reception area til we hear him turn chatty and chilled out, and then we can go and let the Futures folks get on with the therapy.
We've been putting him to bed together every day - something that doesn't get to happen often enough at home. Whichever one of us reads his bedtime books, Janet will always lead a final sing-along of "Hush Little Baby." He is really outgrowing my lap but even though Janet is shorter, somehow Cal always seems to fit just right on hers. It must just be a Mom thing.
Having this intense family time, especially this focused Callum time, is a real gift. He just blows us away every day.

13 comments:

Jim Hanke said...

I was introduced to zerberts via The Cosby Show! :) Thanks for finding the time to update; We all appreciate it.

Anonymous said...

Thanks for the update J. It`s always good to read how he develops. Our son (two months older) is very chatty now as well and last week my wife gave birth to a girl - so there`s even more action now ... :-)

Love as always from
Martin, Germany

Rose Gammel said...

J and Janet, we love spending time with Cal while he is here in Mississippi! Not only do we have the pleasure of working with him, but we have grown to love your little boy and it is such a joy to just be around him. He is just so darn cute! It is amazing to see him react in the therapy room...of course we have a music lesson everyday...sometimes all day! But he does so good while back there. We love ya'll and are so glad that you have made us a part of yours and Cal's life and journey to all endevors!

AllisonDacia said...

I met Janet at the D Plan benefit show, I was a few months pregnant at the time. I have been following your blog since. I love reading updates and his progress.

oui-abracadaver said...

another delightful callum post! when i first found this blog i read the whole archive, then read it again with more tears and chuckles :). he is such a special kid. brilliant, even.

luck and love,

christin in cincinnati

Anonymous said...

Thank you so much for keeping us up to date on Cal's progress. It's apples and oranges, but we're raising a 10-month-old daughter with severe brain damage, and dealing with all the uncertainty, health issues, glimmers of hope and daily tribulations has been quite a handful. Your story gives me hope and makes me smile, and that's a lot in the coldest part of the night. So I thank you, and my beautiful little one thanks you. Zerberts all around!

Brad said...

J.

Glad to hear more about your son...I live in Hattiesburg, MS not too far from Mill Creek. I've been a huge fan of you and your work since Jawbox, you are truly a great musician and engineer. Believe it or not, you have fans down here. Hearing about the benefits you've done for him got me to thinking that maybe one could be done here in south Mississippi. There are plenty of music venues down here, and a crowd hungry for good music (which isn't quenched too often). Long story short, I think it would be feasible to do a benefit show here and have it be lucrative. Though your following might not be as huge as, say, in the DC area, there are plenty of people who would show up sight unseen, if everything was done correctly. Great music for an even greater cause. If this is something you might be interested in, feel free to email me back @ thangusx@yahoo.com

Best wishes,
Brad Burrell
Hattiesburg, MS.

alina misra said...

So glad to hear about Cal having a good time. Take good care (all three of you!)

love
alina misra.

rebecca said...

I cannot tell you how much pleasure I get from reading about Cal. It sounds like he is one happy boy!

theskyatnight said...

Having lived in Baltimore almost all my life, and as a current Baltimore County resident, I can categorically say that you'll find so much for him to enjoy in life outside the city. There's so much beauty if you take the time to look for it. I think I can safely say you and Cal (he's so cute!) will love it here.

Isabela said...

Hello, J!

Thank you for keeping us posted on Cal's progress!

You probably don't remember me, but we did exchange a couple of e-mails when I worked at Amplitude (independent record label in São Paulo), almost three years ago. It's been quite a while, but I've been following Cal's progress here and on Channels' website for a long time.

It's great to know that you and Janet are happy in the new town and enjoying your family and friends. Callum is the cutest kid and it is lovely to read about his insights and imagination. :)

Best wishes,

Isabela (Rio de Janeiro, Brazil)
ialzuguir@gmail.com

Anonymous said...

Thanks so much for taking the time to write updates. It's a gift to be able to share this glimpse into your lives.

Our daughter is two months older than Cal and you come to mind often when I look at her and also think of Cal.

So glad things keep progressing. It's exciting to hear about all the things he's doing and experiencing.

Anonymous said...

Hi there

I totally agreed with you on the Baltimore County Infants and Toddler program. We have that service for our son speech therapy

Kam from Baltimore County