We went to go see Physical (PT) at 10am and Occupational (OT) at 1:30pm therapists at AI Dupont in Delaware on Monday for Sonya's evaluation. Sonya impressed the OT with all of her skills! She is much smarter than your average 15 month old. This is probably due to her limited mobility that she has had more time to focus on things cognitively. She can stack a pile of blocks two high (average), put 5-6 pegs in a peg board (the average is 2), put 10 blocks into a container (average is 3), she distinguishes the difference between rolling and throwing a ball (most 15 month old's just throw it) and her vocabulary is increasing almost daily! While she was working on throwing the ball, she threw it really far and rough with a smirk on her face and said "Uh oh, trouble!", I said "Are you making trouble?" and she replied "Yeah!" Hahahaha! So, "trouble" and "yeah" are her newest words and she has been joining words, making short sentences, and having short conversations with me! Wow! Her therapists mouths just dropped wide open during her little conversation with me! I have a smarty pants on my hands, and apparently a little dare devil too! Despite her lack of crawling, standing and walking, Sonya still manages to butt scoot her way across the room and while at therapy she couldn't get enough of shimmying up and down the play mat almost slamming her head and other fragile bones on the hard floor below. It was like a thrill for her! Her therapists said that she may be one of the crazy kiddos at the OI conferences that want to ride their wheelchairs up and down the escalators (not elevators)! Yikes!
As far as therapy goes, her therapists want me to work on some special things with her at home instead of going to therapy classes. We don't want to use up all of her allotted therapy time per year before she really needs it, like when she fractures both legs and ends up in a spica cast and later needs daily rehabilitation. This absolutely can happen at any given moment and many OI kids have done this more than twice a year!. The first thing we needed to do was get her out of her infant carrier car seat (she still fits in it) and purchase the Britax Boulevard car seat (the preferred car seat for OI kids because of it's excellent support). So, I went right after our appointments to Babies'r'us and picked one up in a pretty pink floral print.
Britax Boulevard car seat
Sonya does something called "ring sitting" or "frogging" (picture posted below) where her legs curve to make a circle, sometimes crossing at the ankles and splay out like frog legs, hence the name. This essentially puts her hips at great risk for dislocation and even fracturing, which would be a terrible trauma. Furthermore, excessive frogging will lead to an inability to walk.
Sonya in "ring sitting" or "frogging" position
To prevent her from frogging she needs to be positioned in an "anti-frogging" seat at 90/90/90 degrees while she is in her car seat, highchair, and sitting in a modified chair to play at a height adjusted table. I made the anti-frogging seat out of swim noodles and pink fabric since these things are not sold anywhere.
Handmade "anti-frogging" seat with seat belt hole.
For Sonya's custom fit chair I bought a plastic outdoor toddler chair and sawed the legs off to make it just the right height and added a 6" thick 12"x12" handmade pillow to the chair back with velcro strips attached to prevent slipping.
Just chillin' and eating some Cookie Crisp cereal. (I didn't have the frogging seat made yet.)
Her tables I made out of green plastic storage bins, turned upside down and sawed a small half circle for foot clearance. It actually ended up being just the right height!
I still have to make the foot cutout a bit bigger and sand the edges smooth. The bin is only 11" high and the table top surface of it is 14" wide x 18" long.
But look who is pulling up to stand again!!!! This was the first time she did this since before her arm broke!!!
She doesn't need to be always in this position all day long, only when she is typically using the highchair, car seat and playing at her play table. While she is sitting in my lap, or anyone else's for that matter, the 90/90/90 degree positioning should be promoted. Obviously she will still frog while she is scooting around on the floor being active, but the times that are spent in her other arrangements will help to teach her the proper seating techniques and hopefully frogging will decrease with time.
"Anti-frogging" seat positioned in Sonya's car seat.
Sonya with her "anti-frogging" seat, notice her legs are together nicely.
Sonya without her "anti-frogging" seat, her legs are starting to frog.
I also purchased a short chair not too long ago, but I didn't realize that it's seat was too deep for Sonya's needs. After a little modification, adding a handmade pillow to the back of it, it now works very well for her! Other parents of LP's you may like this chair! It's called P'kolino and you can get it through
http://www.babiesrus.com/ or
http://www.pkolino.com/ It is just the right size, it's soft and very light, has a handle strap on the back for easy transport by your little ones and it has cute little side pockets for books! Sonya loves climbing in and out of it!!!
Sonya sitting in her P'kolino chair with pillow handmade by mommy!
Now the fun part... I made a scooter for her to work with and build her crawling techniques back up! She hasn't been crawling since before she broke her arm. I made the scooter out of a plant stand with caster wheels and stretched fabric over it staple gunning it to the under side as if stretching a canvas (woo hoo, that canvas stretching lesson in my college painting class paid off!). I stitched a handmade pillow and velcroed it on top for added support and cushioning. She can now lean on this with her forearms and crawl around on her legs or she can push with her feet with her bottom up in the air, doing a half walk. It even rolls over our carpet!!!
Sonya's scooter.
Bottom of scooter.
Pillow attached with velcro (I love velcro!)
Having a great time with her scooter!
It's good to rest every now and then too!
We do plan on constructing a special custom ride on toy for her too that will enable her to strengthen her little legs. Every ride on toy that I have come across is too high for her or doesn't have proper seat belts for her protection. This project might take a bit, but I will be sure to post pictures of her enjoying it when it is finished!
Sonya will also be doing some swim therapy at home. Weather permitting, we will do this outside in our wading pool or at our townhome community pool. As far as the not so pleasant days go, we will use our bathtub for awhile, but we are looking into a full family membership at the YMCA. Swimming is one of the best therapies for people with Osteogenesis Imperfecta as it allows them to move freely and build muscles to protect their weak bones without risk of fracturing. I think we may do better at the YMCA though, as Sonya isn't too fond of our bathtub. She has been getting her baths in the kitchen sink because the giant blue tub is scary! I'll be sure to post some swim pictures soon!
So, I came across a message on my OI Parents support group about "break kits". I can't believe I didn't think of this sooner! I mean really, DUH! Apparently, all these parents of OI kiddos have these first aid kits, but even better with splints and such for when their little ones fracture. Me? I'm burning rubber to the ER to have Sonya splinted and sent home for 24 hours until her swelling goes down enough for her to be casted. So after talking to her OI therapists about this they provided me with the know how as well as the materials for splinting! I now have a "break kit" including all the things I would need for a scrape to a bone through the skin fracture (scary, I know)! It lives in our car so that it will be wherever Sonya is at all times! I feel slightly more prepared!
The "Break Box"
Inside contents : 3 large ace bandages, 4 sugar tong aluminum and foam splints, sterile rolled gauze (lot's of it), Betadine (for bone through the skin breaks), sterile latex free gloves, anti-bacterial hand gel, waterproof first aid tape (lots of that too), Band-aids, Neosporin, 2 instant shake and break ice packs, and of course pain reliever Infants Motrin. I still have to add a few things including sterile water. If anyone has more suggestions I'll take them, thank you!
Ok, this was a super long post! It's been over a week I think since the last one! Thank you all for checking in!!!
Sonya
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