Monday, Nov. 4
A call came through on the way home from school today. It went to voicemail since I was driving. While we were still in the car I had a quick listen. Doctors are funny. The tell you things in a very clinical way and then ask you to call back and leave a voice mail as if playing phone tag would be fulfilling. Sebastian’s left hip is dislocated. It is what they call ‘33% undercover’. I have no idea what this means. She mentions Botox injections and a right hip that is normal. I call Ali even though I know is he busy at work and try not to cry but what am I supposed to do?
Once I get the kids inside and the car unloaded I call and leave a message. Then I call the nurse and have a chat with her. She asks me who his PT is. I run down the list. I’m wondering why she’s asking because they never knew nor suggesting getting his hips checked. I did. I asked the developmental paediatrician about it because we were told he would need an X-ray every year from birth. The last one he had was his second birthday in Egypt. No one had ever mentioned it since we arrived in Canada.
I’m so angry and sad. About a year and a half ago Sebastian started to have trouble walking in his walker with his left leg. We thought his muscles where tight and our PT gave us extra stretches to do for his hamstrings. I’m so sad for all the times I told him to pick up his left leg and move forward. Because he couldn’t. I’m so angry that not one of the three PT’s he’s seen during the last year and a half suggested or asked if he’d had a hip xray. 50% of kids with cerebral palsy get dislocated hips. But I thought his were fine. It’s moments like these that you are reminded who the real expert is. It is not the person with the degree. It is me.
Tuesday, Nov. 5
I spoke to the developmental paediatrician this afternoon. We’ve been referred to the Botox clinic to have a specialist take a look at Sebastian and his X-ray. Discuss whether it will be good for him or not. So now I’ve got something else to research. Seek out folks with experience in this area to talk to. There is a 2-3 month wait for the appointment so I have time. We will also have a follow up X-ray in 6 months time to get an idea how much his hip is moving in what kind of time frame. His last X-Ray was when he turned two in Egypt and it was fine. Now he’s 5.5. We started seeing the lag in his leg about a year and a half ago.
It felt better to talk to the doctor. But I sill felt pretty down all day. And talking to the doctor doesn’t take it away. She said that being in his walker helps and sitting down too much does not. That’s reassuring. Except when you have to depend on others to put him in his walker. He also gets additional stretches in a stander. Because Sebastian is in an integrated education therapy program he gets his physical and occupational therapy at school which means he’s getting out of his chair some of the time to work on skills, move his body and change positioning. He has swimming once a week too which has to help.
Sunday, Nov. 10
We try to make sure his spends time in his walker both weekend days and if we are really busy (out and about) then we walk him around ourselves. An uncovered hip isn’t something that will go away. It won’t get better. I hope and pray it is not painful. I don’t know if he will get Botox in the muscle near the hip. I don’t know if that will help or how. We have a few months before the consult. Which gives me time to do my own research. Find other moms whose kids have experienced something similar.
How did it happen? Because Sebastian has mixed/dystonic cp his muscle tone fluctuates. When he is excited or upset his tone gets tight. He also uses his tone to help him stand taller and walk. I think the tight muscles pull on his hip and slowly over time it becomes uncovered. Overtime it can get so uncovered that the only intervention is surgery. It is very common in kids with cp. It’s another one of those reasons we just take life one day at a time.