One Step At A Time

MJ had his follow up appointment with Phoenix Children’s outpatient physical therapy today. He has made great progress but still needs work on the neck extension. I just love how they do kids PT by playing games to get them to do what they need. I wish they did that with adults!

MJ’s therapist Cori used bean bag animals and held them above MJ’s head to get him to do the neck extensions. He had to extend his neck to look at the animal before he could reach up to get it and use it to throw in the basketball hoop. He loved it and had a lot of fun.

She also had him use a large ball on his stomach and roll himself across the room a few feet (while she held him) to retrieve an animal from the ground and bring it back to the container. This helped his neck extension because he had to

look up from the ball to see the animal. I have to tell you when I saw her get out the ball I thought to myself there is no way he is going to go for this. Before surgery any time he was faced with activities having to do with balance or things that made him feel unsecure his anxiety would take over and he would go to tears. This time momma went to tears (silently from my chair in the corner) when I saw my little man just go for it with only a little hesitation. This surgery has already made a difference in his balance (taking some of the pressure off of his brain) and his feeling of security with that balance. Blessing counted.

But it was a bittersweet visit……

The first day MJ started walking after his brain surgery I was celebrating. Then I watched how he was walking and that lump came back in my throat. He was walking – but something wasn’t right. When he walked down the hall in the hospital he was swinging out his right foot wide / to the side and almost walking sideways with it (pointing his toes inward). The in-patient physical therapist also seemed concerned but we all decided maybe he just needed to get his sea legs back and that maybe after more walking and building up his strength that it would eventually go away. As you may recall MJ was sent home with a walker from the hospital because he was very unstable with his walking and seemed to have weakness in his right foot/leg.

MJ’s walking has gotten strong enough that he doesn’t need the walker, but as a mother and watching him every day my feeling was there is still something to be concerned with. We always knew he walked different (mostly toe walking) due to his sensory issues with Autism but this walking was telling me something was not right – it was different.

When MJ saw the outpatient therapist Cori (same one we saw today) about 10 days after surgery she had discussed with me on her first evaluation some of her observations with his walking and it matched concerns Dan and I have had for quite a while. Today I talked to Cori about MJ complaining of foot pain and her opinion on his walking. He hasn’t shown any more improvement with the walking issues so we now need to address it.

MJ trying to balance on one foot.

MJ’s right leg is very weak compared to his left side. He cannot balance on it hardly at all. He drags that leg when he plays on the floor. He doesn’t lift his toes enough on that foot when he walks and his toes catch on the floor often which causes him to trip.

Notes will be sent to the neurosurgeon tomorrow morning. Cori is recommending a leg brace for MJ to correct his walking and indefinite physical therapy. I am having major mixed feelings as a mom. I am relieved someone like Cori is listening and validating our concern but at the same time I feel like this is a setback for him. Just more evidence that he has a lifelong condition and we cannot predict how it will affect him. It is likely that his walking problem is a result of his Chiari, it could be neurological damage that is showing as a result of his spine compression.

I just have visions of my sweet boy having to wear that leg brace. It is going to be a major struggle for him. Please pray for his anxiety and sensory issues as we approach appointments to have a brace fitted and made for him. I am very concerned about how he is going to handle this.

Thanks again for all of your prayers and support and for hanging with us through this ongoing journey. We still need all of you!