This is my entry in the Just Ask Bucket List Getaway Giveaway. Just Ask offers a breast and ovarian cancer screening and is encouraging people to share 15 things that I want to enjoy in my lifetime as a reminder to be aware of my health. Want to enter? Head over to TodaysMama.com to get the details.
Normally I don’t blog about contests, but this one looks awesome and besides, who doesn’t enjoy a good bucket list discussion? So, here are 15 items from my list, in no particular order:
1) Learn to sew, well enough that I can make myself some skirts 2) Write a book (even if it doesn’t get published) 3) Get back into doing research 4) Be in a studio audience…I don’t know what show though. Probably Ellen. The Menininho and I love Ellen. 5) Go whale watching 6) Travel with Mark to Venice 7) Learn to speak Portugeuse fluently 8 ) Also become fluent in ASL 9) Go back to school and become an OT 10) Get my PhD (are you sensing a continuing education theme? Mom’s working on her 5th degree…it’s genetic.) 11) Eat a beignet in New Orleans 12) Go on a mission with Mark 13) Fly 1st class, just once 14) Take Mark to meet my family in Brasil 15) Become a competent cake decorator (for, you know, family functions and close friends)
Sensory play is good for developing fine muscle coordination, and even more important for kids who have sensory issues, such as being hypersensitive to touch (so the OTs drill into me!). We had a free afternoon (a rarity these days), so I decided to whip up some instant pudding and let the boys have at it (because the OTs are always telling me to do this & I’ve yet to try it). The Menininho enjoyed swirling it around with his fingers all over his high chair (and then the counters, while I was bathing his brother). Baby J just worked to shove the pudding in his mouth as fast as possible. Next time, we’ll try Jello!
Baby J hit a major milestone this week: he started to crawl! Not too shabby for 10.5 months old! J started doing the “army crawl” about a month ago, but has been having trouble getting his legs up under himself and having the strength to push up on his arms. On Friday morning he finally got the hang of it and crawled a few feet across the living room before happily collapsing in front of a toy. J hasn’t crawled that far since, but he’s working so hard at it!
Now, I know the American Academy of Pediatrics no longer considers crawling a major milestone. Because of that, I hadn’t cared whether M crawled (though he did, for 3 months) and I just assumed that J would skip it. He’d never been able to fully push himself up on his arms (not till about 2 weeks ago anyway), so how would he crawl? Well, his OT and early intervention specialist (also an OT) set me straight.
They explained to me that crawling helps with some fine muscle development in the wrists, fingers, elbows, and shoulders that a child just doesn’t get another way. Kids who don’t crawl, or don’t crawl for long, are at more risk for having pain and weakness in these areas later on. They’re also learning that in many cases, the kids who refuse to crawl at all end up having some sensory issues and that’s why (it’s theorized) they avoided crawling.
So what does all this mean in terms of Marfan syndrome? Because of our loose, weak connective tissue, crawling is all the more important. Not only will it strengthen the hands, elbows, and shoulders, but it can strengthen some of those other loose joints, like the hips and knees, as well. As someone who has always struggled with handwriting and now, as an adult, needs to type everything because writing much causes too much pain, I want J to have every chance to be more successful in that area than I’ve been.
I realize there’s only so much that we can do to get him to crawl, and some kids are going to skip it despite the best laid plans and hardest work. My point is not to incite fear or guilt in the hearts of parents whose kids went straight to walking, but to provide information for those whose babies are still young. If we hadn’t been doing the OT, PT and early intervention specialist 3 times a week, there is no way that J would be doing any measure of crawling at this point, and I doubt he would have started army crawling as early as he did. We’ve been working hard with him, and I figure any bit of crawling that he does will be a success in my book, even if it’s only another day or two.
If your child with Marfan isn’t getting OT though, and you’re concerned about possible delays, you might want to look into it. I am so glad that we have been able to get that for J, even though Early Start didn’t write it in his IFSP.
I’ll be posting more about specific exercises we’re doing with J, as well as what equipment we’ve found to be helpful. If you have a child with Marfan or a related disorder and you have some sort of equipment (particular toy, bath seat, stroller that fits an older child, etc.) that you’d recommend, shoot me an email. I do want to keep a running list of recommendations on this site, plus I’ll be creating a Marfriendly Holiday Gift Guide over the next few weeks and would welcome input.
Unfortunately I couldn’t get Baby J to crawl on camera, but here’s a cute video of the Menininho trying to show him what to do.
