Update on Celine

As you know Celine was diagnosed with Perthes Disease at the beginning of January but if you didn’t, you can catch up here. So, I thought I had better give you a proper update on Celine rather than bits and pieces during random posts.

The week or so before school started, I got to talk to Celine’s teacher for the year as she lives next door to one of Celine’s friends. We got to have a quick discussion on what’s been happening with Celine and what her needs will be this year with her condition. Her was really supportive and had a few ideas on how to make things work for Celine without her feeling excluded and she offered to talk to the other teachers to make them aware that Celine may need an eye on during the morning tea and lunch breaks. Celine has been placed on the children at risk list in the office for this reason.
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Decorating her “bad” foot with temporary tattoos and toe rings to make it look special.
On Monday (3rd February) I had an appointment with the local physio person in our little town and she was the first person I had spoken to who understood the condition without me having to explain it. this appointment was a quick one while Celine was at school just to give me some advice on where to go from now. She was concerned that we had been a month without hearing from the specialist that Celine was being referred to so urged me to phone up and chase the referral up. We then made an appointment for yesterday (Friday 7th February) straight after school so she could assess Celine’s condition for herself and see what she needed doing.
At yesterday’s appointment, she pointed out that Celine’s thigh muscle was started to get that disused look and showed us some exercises that Celine can do throughout the day to exercise that muscle. She has to do 10 of each exercise and up to 10 sets a day. It sounds a lot for a little girl but it will be worth it if it keeps her leg from getting weak. She has another appointment in a fortnight to see how she’s getting on.
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Having fun with her new purple glitter nail polish
I phoned the hospital yesterday and got transferred a few times to different people. Celine’s details were apparently in the system but no one could tell me what was happening with her referral until I was transferred back to the reception of our GP. She said the letter had been sent on the 7th of January and that she would chase up on it herself and send a follow up letter. She phoned me back later that afternoon to let me know that Celine’s appointment with the special was booked for April which is a really long time for us to wait. In the meantime she is arranging for GP to provide us with a script for another bottle of ibuprofen for Celine’s school in case she needs it while she is there.
A very kind reader of my blog (thanks Regine) who has gone through all this before with her own daughter gave me a few suggestions to help Celine which I have been trying to implement as I can. Things like the Snyder Slings which I have been making (Celine has 4 now) and wearing only the left shoe and decorating her right foot to make it feel special. I am blessed and so glad to have readers who have experienced all this and have helpful suggestions on getting through this.
So this is where we are at for the moment. I have plans to get Celine back into swimming lessons at the local pool as a way to exercise her legs without being weight bearing. and focusing on keeping things as normal as possible for Celine despite her new disability (including her chores, much to her disgust).

 


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