7th of January 2012

The first 5 days of January were fantastic. I had a whole new energy around me, I felt like I could take on the world. I still feel like that most of the time but the last 2 days have been getting harder for Zoe.

Thursday Zoe started getting irritable again. She has started going off her food and she has wet her pants twice and wet the bed once.

I had noticed a pattern a few blogs back. She has her treatment on the Tuesday, Wednesday she has an upset tummy (loose stools), Thursday she seems stronger, happier. She is fine by Friday, Saturday, Sunday, Monday, Tuesday and by Wednesday there is a decrease in appetite, then Thursday she is irritable, tired and clingy. 

So if I go by this pattern it means that Zoe has One whole week of feeling "good". She still has the daily pain but she deals with it. I noticed also the last time she was like this she also wet the bed and her pants. I guess I had never noticed before because she had nappies. I know it is normal for kids her age to have accidents but she doesn't do it without the other symptoms. Coincidence or effect?   I guess this is another thing to talk with her specialist about. 

We had a meeting with a lady from the Government agency who help Physically handicap people. We are discussing a Paediatric Pram instead of a wheelchair, that will be suitable and adjusted to Zoe and her needs. A normal pram keeps the spine in a cocoon shape, the feet rest is too far down for it to be useful for Zoe and there are no arm rests. Therefore she is sitting with her legs dangling down and when she has swollen knees or ankles they will throb and cause more pain. So her body is not able to rest as much as she needs. Her legs need to be elevated a little and her arms need to rest on something also. Seat and Back need to be firm but comfortable.   So we are in the throws of getting this sorted out.

Apart from that we have also been given the appointment at the Ophthalmologist in Paris (for a second opinion)   which will be just before her appointment with her specialist. Needless to say Willy and I are very relieved.  

It is treatment day in 3 days and I know she will feel better next week. She also started back at pre-school after 6 weeks off. I had one morning all to myself. It was amazing to do Nothing at all :°)

I will write again after the 17th, when we have seen her specialist.