Wednesday, October 01, 2008



10.01.08
How time can go by like this has always been a mystery to me. But we have had a really good few months. I don't want to tempt fate with a statement like this, but Callum has been doing great. Whenever I've thought to sit down and write, to preserve the moment, I've opted to just go on savoring it instead.
Which is of course exactly how so much time can end up going by.
We've spent as much time as possible this summer with Callum in the water. Janet found some great flotation collars online which unfortunately tend to last only a couple of swim sessions but which are a perfect design to support him as he splashes around. The pool was a total revelation for him and he couldn't get enough of it all Summer long.At first it was all about taking him to the edge of the pool and getting him to push off like he used to do in the bathtub when he was smaller, or just making him laugh by splashing around, but just before the weather started getting too cold, he had actually started to coordinate some movement, kicking his legs and pushing the water with his arms, and moving himself along - albeit at a very slow pace - under his own steam. Swimming is probably the single best physical therapy he has had this year.
The other big recent news is that Cal test-drove his first power wheelchair at Kennedy-Krieger Institute last week. He did nearly run over both Janet and me on a couple of occasions, but by the end of the session he seemed to have a grip on the importance of stopping when "driving the robot" (robots are one of his great obsessions these days and he immediately made the connection with the power chair). We were all elated when he clicked the "go" button for the first time, realized just what he was doing, and went rolling down the hallway toward Janet.
Finding a mechanism to control the chair is probably the biggest job, since Cal's grip is so weak. Very light finger-switches were the first approach we tried and it worked, physically at least (we all ended up thinking maybe it's too linear an approach since it would require several switched to cover all the things he might need the chair to do). A joystick that seems to work more like a track-ball is next on the list for control options; maybe that will end up being more intuitive? We're excited to see. We are planning to return and try out as many chairs and configurations as we can before making a final decision on a particular power chair, since this is a piece of gear that will be with him for a long time and we want to be sure it's the right one.
We had guests from the UK last week too - Janet's old friends Kate and Dave and their daughter Belle, who is almost exactly Cal's age. It was the first time he's spent any time with a kid his age and it was great. Amazing to see them together, their interactions with each other ... in the runup to this visit we were a bit worried how Cal might react to the constant company of an able-bodied peer, but instead of making him discouraged or upset (or whatever we thought it would bring out in him), Belle's company seemed to inspire him and he cheered her on as she ran and generally threw herself around our living room in typical toddler style. They also were able to play together a bit and got pretty good at sharing Cal's toys. The two of them together brought a wonderful new energy into the house and we were all sad to see Kate, Dave, and Belle return to the UK at the end of a too-short week.
Cal has had a couple of colds this year, which he got through OK, and he had another week-long pneumonia scare earlier this Summer but after a trip to the emergency room at Hopkins we decided to treat him here at home with antibiotics and a disciplined schedule of cough-assist and other therapies, and he got though it just fine - and he was generally so "up" that it was hard to tell he was sick sometimes, except when he was finally really out of the woods and his personality was able to come through full-force again.
He is really loquacious these days and honestly I can't think of anything I'd rather do than hang out with him, play and chat. His malapropisms are pure gold (we were playing with some wooden blocks today, and when I told him that they were cubes, he informed me that they were actually "barbecubes").
If I don't stop I am in danger of writing til daybreak, so that's it for now. Hopefully it will be a matter of days and not months before another entry here.
With much love to all those who have continued to offer support of all kinds,
J, Janet and Cal

14 comments:

Anonymous said...

J, Janet, Cal,

Great to read an update and glad to hear all is going well! All the best,

- Aidan

Lachlan said...

Sooooo glad to hear everything is rocking. I have been meaning to email to get an up date but time has slipped away. The DVD is still being worked on! Everyone is flat out so it is taking a lot of time unfortunately but we will get there.
Fantastic blog that has but a huge smile on my face. Great to hear Cal is doing well. Speak to you on the email soon.

Lachlan, Renee and Chloe. (Melbourne)

Anonymous said...

Great to hear from you again! So exciting about Callum swimming. My three year old is loving "nobots" right now as well. Wishing you much love and continued progress from Pennsylvania.

Jenn Fox-Thomas said...

Hello j -- so sorry it has been so long. My family and I have been following along with your blog and I wanted you to know that we think about you often and send every good vibe in the world your way! Interstingly, lately our toddler son Max sends the vibes to you through the telecom on a robot helmet. :) Rock. -jenn thomas (fox)

satsumalynn said...

Hello J, Janet and Callum:

I've been meaning to get in touch with you for quite a while, but time just keeps passing by. I don't recall how I found your blog ... but my son, Liam, has SMA Type II. He turned four at the end of April. He got his first power chair when he was 20 months old, though he first learned to drive at 16 months. It is very exciting that Callum is about to get a chair -- it'll be a wonderful (and challenging) thing, all around.

If you would like to email me, please do so! I would love to hear from you.

Best to all 3 of you ...

Anonymous said...

It's wonderful news to hear that Cal has been doing well (and to hear about it)!! Please keep us posted.

Best wishes to everyone,

Pat

The Daily Breather said...

Hi there, I just got a link to your benefit concert at the Ottobar on 10/23/08. Which brought me over to your blog. It's a really sweet blog. Keep up the good work and best of wishes in your daily lives.

Madison said...

Has Cal tried the mini joystick? Thats what I have.
It's super sensitive and easy to push even with just a finger. Only problem for me is getting it positioned in the right place. HUGS to Cal!

Anonymous said...

I absolutely love reading Cal's updates. They warm my heart.

Rebecca, Charleston

Kristin said...

What an absolutely beautiful little boy! So glad to hear that he's doing so well. Sending love from Richmond, VA - Kristin & Steve Cummings

Anonymous said...

"Barbecubes"...!
Cal just made my day. We're wishing you all the best.

Rachel said...

A big "hello" to Cal from germany. I read your blog regularly and I hope you´re okay in the moment. He is such a sweet boy!

Anonymous said...

J,

Wow.

-Old Pal Chris O'Connor

Naomi said...

I heard about Cal at work when he was still in his first year, and a co-worker was helping with a fund-raiser. I read about him here and then went back to work and pitched in what I could. I think it is totally awesome how well you, his parents, are doing with him and it's a joy and inspiration to read about his progress and see his brilliant face! Keep up the good work and I'll keep you all in my thoughts and prayers.