My B Worries

Ok better out than in. I'm feeling a bit under the weather too which doesn't help. Had to leave work today at 9.30 after my fuzzy head stopped me from putting some vital information on a theatre chart.

So a few things bothering me that are better out than in and for those who like to get updates via my blog on our life, an opportunity to see whats going on. If you are interested.

1) B has put on weight again. Ok, I could visibly see it but school have weighed her and its only 1.5kg since April. Not too bad? Hopefully not. You know how hard we have worked on getting her weight down and since this weight gain puts her at the same weight at Jan 07. I say that's pretty good for a girl still growing? Right? Hope so. Just need to keep it that way.

2) Her feet. I'm very worried about the neuropathy in her feet. The coldness and the injuries she is starting to sustain and the pain after swimming. I am pleased she still feels pain because when she doesn't that is another step forward on this horrid disease trail but this development is still one step towards it. And then she doesn't tell anyone when it does hurt. Only me! and I am not there at the time!

3) I still haven't quite got over her breathing difficulties, fear and panic attack from a couple of weekends ago. I am worried about her sleeping which is ridiculous and I don't have so much to fear as others do on that front. (I don't think)

4) She changes boarding house this September. She has been in the same one since she started Treloar. None of her friends are moving up to the same one but she knows one of the girls who is and has requested to share with her. I am worried about them knowing her needs, her routine and her not speaking up for herself. Feels a little like she is starting all over again but knowing my girl she will be ok.

5) Why is it that school do not see her swallowing difficulties? as in her coughing episodes when she drinks. I am not sure if I am being OTT by asking her Neuro/Paed for further investigation and then if the results aren't good the impact on her life? Or is it better to see what is happening to try and prevent further damage or is it inevitable with her that her swallowing ability will get worse. I just don't know.

6) and then these headaches that never end and the fatigue and nausea that sometimes come with them. and the growing list of medicines she is taking and concerns over the side effects of those? What will the Neuro put her on now?

and the good news

• Balder w/c comes in less than 3 weeks
• B is deputy head girl next term
• We are going camping tmw and the weather is going to be awful...(ok im trying to remain positive about this - thats what rain capes are for right?)
• I have lost 13.5lbs in weight in 5.5 weeks.
• B's end of term is two weeks, mine is three weeks...YEAH! (not mentioning the exams before that......)

and

tomorrow is friday.....:)