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

Cock Robin

We had a hospital appointment today to see how Lucy was getting on after having her halo removed.
The Doctor straight away noticed that her neck was not straight. He asked several times when the halo was removed, I'm not sure why, it was two weeks ago, it seemed like he didn't believe me. He said that she had a xray on 3rd March and her neck was straight. I said 'yes, that was two weeks ago, when she had her halo removed.'

He took off her collar and asked her to look to the left, which she did (and grimaced). The he asked her to look to the right, which she couldn't do (and grimaced even more). He asked her if she was in pain, she replied 'a little bit' She hates admitting to being in pain for some reason.

Then he said he would need to speak to her consultant, but was certain that she needed a scan. So we waited around for a while. Then he got back to us and said that they couldn't arrange a scan until tomorrow so could we come back. On the way home I had a call to say we had to come in Thursday instead.

So, still no answers. We really don't know what is going on.

I have two theories.

1. The muscles are too week to hold her head up straight and that's what is making her lean. Perhaps if they can strengthen her muscles then she will be recovered.
I worry that maybe her muscles were lax in the first time and that's why the bones subluxed. In which case there may not be a way to strengthen them. I'm not sure what the answer would be if that was the case.

2. Her joints are starting to sublux again. In which case then they will need to find another way to fix her, if that's possible. It also means the last three months of enduring the halo have all been for nothing!
It also brings up the question, why are her joints subluxing all the time?

One thing that the consultant has mentioned in the past is fusion. The joints in her neck would be screwed into place to stop them from moving.

I hope it doesn't come to that, but I do want her fixed.

Six Days Post Halo Removal

I thought I'd give a little update on how Lucy is doing now her halo has been removed.
It feels a little strange, like we have gone back in time. Back to the beginning, when Lucy was first fitted with a collar, when she couldn't eat, sleep or move properly. She's been in so much pain this week it makes my heart bleed for her. Her neck muscles must be so weak, she can barely hold her head up in the collar. If I take it off she's in agony.

It's still early days yet though and I'm hoping and praying for improvement. Currently she can't get in or out of bed alone or turn over in the night. She can't lie down without help. She's having trouble swallowing and is barely eating or drinking. She has bad headaches and the pain in her neck has her grimacing constantly.

She's still not complaining much though. I'm giving her regular painkillers and asking her if she's ok. She told me tonight that it's best when she's in bed. I've given her a big plump pillow which is what the consultant recommended. It gives her neck extra support and she is comfortable....until she needs to turn over.

I gave her a bath. It was wonderful to not have to wrap her up in bin bags first. She could actually sit in the water, although she needed help getting in and out of the bath. I took off her collar to wash her hair but it hurt so much it was a very quick wash. Also, I was wary of her wounds so I had to use baby shampoo, and not rub very hard.

I haven't yet removed the plasters off her forehead wounds, she won't let me. The wounds on the back of her head are looking ok though, nice and clean. Just one is a little bigger than the others, this is the one that gave her the most trouble while the halo was on. She complains that they are sore and itchy, but I've not seen her scratch them. Fingers crossed they will heal quickly.

pin wounds

Today she had another bath. She was a little more relaxed than the first time. I took her collar off for a little longer and she didn't complain so much. I noticed that she is not moving her neck, to turn she moves her shoulders. This is understandable, she's not used her neck for three months, it's bound to take time to work again. A little more worrying was that her head is once again in the cock robin position. she is not holding it straight. I keep reminding her to sit up straight, and hold her head straight, but it must be so hard for her. I just hope that as her muscles get stronger she will be able to hold herself straight again.