Hello to our loyal followers! We've been wanting to write a new post sooner but we haven't had a lot of success with therapy to comment on and weren't sure what to write. James has had some setbacks in this journey. He is like his mother (it's Ali writing) and is oh so stubborn! It's comical yet frustrating at the same time how alike we are. James has been protesting a lot in therapy lately.
I would be doing the exact same thing if it were me! He is very aware of what's going on and is resistant (to put it nicely) when he's asked to work hard - particularly with crawling and walking movements. This is where pictures and videos can be deceiving. There have been some people who have thought from previous posts that James can stand with little assistance. It is true that he is getting stronger however he does not have the strength or the coordination yet to get into (and maintain on his own) a 4 point crawling or pull to stand positions.
That's not to say that we haven't seen some small gains lately. James has begun to open his hands more (instead of hold in a fist) and can now clap them together on his own which he's very pleased about! This week we have also seen improvements in his ability to pivot - when on his tummy, he's been using his upper body to pivot all around (this morning he pivoted around 360 degrees!). Also when he's on his tummy, he bends his left leg (the stronger leg) in an army crawling (or creeping as physios call it) position. You realize when you try it yourself, army crawling is incredibly difficult (go ahead, try it!) You have to use your arms mainly to propel yourself forward. We've been using our hands as a push off for James' left foot so he can feel success moving forward. Here's a video of what he does when he tries without our assistance:
We've started back at Conductive Education twice a week with the March of Dimes. It's an excellent program with a preschool-like set up with a variety of activities. There is one other boy in the class who also has CP but has a higher degree of movement than James at present. They have an excellent mix of fun (lots of singing - James' favourite) and hard work. They push James in many different ways - independent sitting, crawling or walking to and from activities.
This is where it's a very different philosophy of therapy than ABM. ABM's modo is "if he could he would". That was a good approach for James earlier on when rolling was a hard task but not now when James can roll all over the place. He now needs to be pushed to try the harder movements. The modo now is more "we will make him do it so he knows he can". We had a few weeks with Medek when he was really enjoying it after we endured many appointments of crying the entire time! He eventually realized he could do it, and enjoyed the challenge. Here is James working hard in kneeling and weight bearing (a short moment of no crying!).
We've had a setback time right now where he's protesting the challenge and often tries to manipulate us (he'll be screaming one moment, then he's handed to me, immediately stops crying and smiles at his therapist - what a monkey!). We've talked in therapy that a further development in language would be helpful for James in this regard. We could barter with him and he with us. We're confident that James has a high degree of understanding but his expression of language is delayed. Mike and I are attending a 4 week language workshop at Grandview currently to help with strategies at home to further develop this.
We are also in the process with the help of Kate from Grandview to get some assistive devices for James to use at home to encourage independence such as a supportive seat and a special tricycle. Here is Kate working with James in his standing.
An update on Shae:
You may be wondering how Shae's hemangioma is progressing. Doctors are happy with the improvements. Her right eyelid still has some swelling and purple-ish colour but that will improve with time. We go to Sick Kids every other month now to check on the progress and adjust the dosage of meds based on her weight. She's a very talkative little girl, loves chewing on teething rings, has enjoyed starting rice cereal recently and sleeps through the night!
