Well ladies as you know I have been going a little bit (well quite a lot) mad just recently, anyhow things all got too much and I spoke to my hv, she came round yesterday and we had a really good chat, she said it is understandable that I feel as bad as I do, not just because of Isaac but also because of all the things with hubby and lots of other little things, anyway, she is going to speak to the paed and see if he will do the blood tests which he has stored early and if not ask if he will see me again to discuss why not and what he thinks is the problem with Isaac, also Phil had his visual field test which would have given us and indication of whther the tumour was getting worse but the visual field has actually improved!!!! Amazing I was hoping for it to stay the same but it has got a bit better, it is only a very slight improvement, but and improvement all the same. For the first time in ages I actually feel happy with things.
Anyway no other point to the mesaage but thanks for all your support and listening to me whinge about things xxx

Really pleased to hear you are feeling a bit more positive, i think you are doing a tremendous job and you must remember to look after yourself as well. glad your hv is being helpful espesh about Issac.

Im here if you ever need a moan or discuss things.

big hugs and sending you a hot deep bath with spiced berries radox a glass of wine and 20 minutes peace and quiet

xxDBxx

hi hun
so glad you were able to talk things over, hope you get issac's blood tests done soon. after living with a brain injured daddy i can hazard a guess as to how hard things are for you at present and am sending virtual hugh jackman hugs to you lol

xxxxxxxlollyxxxxx

So glad you are feeling more positive about things hun.
Hope you get your little mans results back soon.

big hugs,

Sarah and girls x x x x x x

Really glad to hear you are happier babe. Hope all goes well with Isaac. take care babe xxxxxxxx

hi
glad you had a chat with someone and that they are moving things on a bit for you.

You are a super woman...a lovely person...and I am sure a fab mummy!

Try to have some time for you to recharge your batteries too...

d xxx

Well the paediatrician rang me back yesterday, he is very nice but expleined that it is not a simple as just doing the blood tests, if and when he feels the need to do these bloods then he will need to do the muscle biopsys to get the full picture, hence why he wants to wait, he doesnt want to put Isaac through something that may not be necessary (neither do I). Anyway he was really lovely and did say that he would ring back in a month to see how Isaac and I were doing, if still no significant improvement then he would consider referring him for another opinion, I asked if that was necessary as I do trust him but he said that whilst he feels it could just be down to Isaacs joints there may be some aspect that he is missing and 2 heads are better than one, that is fine but he wants to refer him to the nuerology department at Addenbrookes hospital, trouble with that is that I have a big 'thing' about that particular hospital and department becuase of all that has happened with Phil, I came off the phone feeling 100 times worse than before and decided that maybe I should just leave well alone till December when he has his follow up and what will be will be.

To make matters worse I got a letter from the paediatric physios telling me Isaac has been referred for physio by the paed ( which I knew) and asking me if I still wanted the appointment, I phoned them and told them I did and they said that he is on the urgent high priority list so his wait is likely to be 3-4 months!!!!! Whilst I was on the phone to them I asked them about Megans referral as she has been waiting 5 months and they have no trace of it, When she ws referred our gp (who is a complete f**k wit) referred her to the adult clinic who assessed her and said its wasnt appropriate to see her there she needed paediatric physio and she would get her referred there, anyhow the gp was supposed to follow that up and make the referral and she didnt, so now I have had to spend a morning at th gp chucking a hissy fit because they cant get her moved to the top of the physio list so she will more than likely be waiting at least another 4 months unless I can go private, I explained that if I could afford to go private then I wouldnt have waited 5 months in the first place.

Rant over