New School and Neurosurgery Appointment.

I am so far impressed with Lucy's new Secondary School. She was upset the first day attending but soon settled in and seems happy to go. Of course I have concerns about how she will get on but the school have been very proactive in putting things into place for her.

Today I have two calls from the school. The Inclusion Lead teacher wanted my permission for restricted P.E. I did tell them she had problems and may not be able to do P.E. lessons but I wanted to wait to see her Neuro Surgeon before telling them what she can and can't do. The school have already assessed her abilities and made special arrangements for her. I'm very impressed, and happy that my girl will be included in some P.E. lessons but not pushed to the point that she could be hurt.

The second call was from a lady from Place 2 Be which is a type of school counselling service. Lucy told me she had been attending. She has to request to an appointment by letter and has been doing this herself. Now the lady wants to speak to me to let me know of the things Lucy has been talking about and for my permission to refer her to counselling. It's nice to know that Lucy has somewhere to go and someone to talk to. she does get really anxious about a lot of things.

Today I also received a letter about her appointment with her neuro consultant that she saw last month. I didn't go to the appointment, I asked her Dad to take her because on previous visits I knew that you have to wait in a fairly small corridor and my wheelchair would be an obstruction.

The appointment went well and the letter outlines everything discussed. Lucy does have a spinal prominance at C6 C7. This means the back of her neck has a lump. The consultant explained this was due to the bone graft. Any pain she has should subside eventually and she can take pain relief if it gets too painful. Her scar has healed nicely and there are no problems there or with her CT Scan. So
good news really.

The letter also outlines everything she can and cannot do sport wise which is great for the school. I will make a copy and take it in to them, but they are already doing all they can so it will be just a case of medical evidence.

Everything seems to be falling into place. I just hope the counsellor doesn't have too many worries for me to deal with. Lucy seems quite happy anyway.

Lucy's Neck and Other Problems

I'm feeling a little concerned about Lucy's neck. While brushing her hair last night she said her neck was sore. On observation I noticed that there was a lump at the base of her scar. It has always been raised there but now it seems more so and she said it was painful when I touched it.

It's hard to see in this photo, but I took it so that I could keep an eye on it and compare it. If it gets any worse I will push to see her consultant sooner. If the soreness doesn't stop I will take her to the GP and see where we go from there.

She had a CT scan on her neck just a few weeks ago, so if there was something wrong surely they would have noticed and contacted me. Sadly, I know this is not always the case, she's had scans before and the consultant has not even looked at them until her appointment. She is seeing the consultant in August so we will know for definite then.

In other news she is being seen in the cardiology apartment this month for a check on her heart. This was requested by the genetics dr we saw in February as she thinks Lucy might have Marfans Syndrome or another form of Elhers Danlos Syndrome rather than hypermobility. Lucy has already had her eyes checked and they came up clear, so maybe her heart will too. Fingers crossed. 

She is also having trouble with her mobility again. We noticed when we were on holiday that she wasn't getting very far without hurting and it seems to be getting worse. She's complaining whenever they have to walk anywhere at school, for example they walk to the local public library which is about half a mile away. Even if we are doing something fun she will complain, it's becoming more regular.

Her gastric problems are not getting any better and she has had several accidents in school over the past few weeks. I was so hoping we could have had this sorted before September, but it doesn't seem so far away now. 

Finally, her sleeping pattern is really bad again and I reckon she's currently getting about five hours a night :( 

That girl is nothing but trouble  sometimes x