What a week!!

The beginning of this week was pretty uneventful. Although Amber's seizures seems to have got worse again, and the only thing in her diet has changed has been yoghurt. Because Tesco's ran out of the brand she can tolerate, a sheeps Greek yoghurt. So I have been busy trying to sort out the supply chain on that stuff.

To cut a long story short too, I fell out with Ambers physio in April, when I say Amber's physio she didn't really do anything, her belief is that you can't give Physio to a Epileptic Child! but that is for me to rant on another time....... Anyway, I asked in nursery last week whether anyone from Physio had seen her since April, and the answer was no, so up I climbed, back onto that high horse once again, like many of us mums do on a regular basis. Then I was told on Thursday that a new physio would see her Friday which she did and this would then follow her into school, so it was a small triumph to round the working week off. I also organised our first trip to the Wheelchair Clinic which is this coming week, to see if I can get a suitable buggy/chair for Amber, as she really slumps in her MacLaren.

The house move is going well and we hope to move at the end of October, to prepare for this Saturday we thought we would go to Taunton to look for new furniture. Then on the way back, I unfortunately wrote the car off!!, we were on a country road and a elderly lady pulled out in front of us, I wasn't travelling that fast, because I was in the that, is she, has she of course she has seen us scenario, but then it was too late. I had swerved, so the damage on her car wasn't too bad, unforunately ours is a write off and my son Cameron (thing 2) was injured. The seat belt (middle belt) didn't save him from moving forward and he hit is head on something, so he has a broken nose and cuts to his eye lid, the rest of us are OK, apart from whiplash and bruising, but what a lucky escape. Amber bless her, dropped her bottom lip but was fine as soon as I got her out of the car. A very frightening experience, especially the smell of the airbags, so as soon as we stopped the car, it was out out out. There were some lovely people that came to our rescue which was really nice.

Saturday morning we received a copy of the referral letter for GOSH to see Metabolic Man, it was quite an interesting read, as one particular test I assumed was normal stated that "My understanding is that, despite some possible abnormalities, we do not feel she has a neurotransmitter disorder or a respiratory enzyme problem" It does make me a bit angry because if they were not sure on the neurotransmitters, especially as problems are very rare, then they should have sought advice on the results alot sooner, and not nearly 14 months later! still at least we are being referred now. He also went on to discuss a condition, that he had mentioned so many times before which I think he has a strong suspicion off, again a rare condition. I shouldn't complain I don't suppose, because we have had an aweful lot of investigations, and the next lot will be haematology. So now it is the waiting game, waiting to see the postman in our street, popping home in the middle of the day to see if he has been, getting frustrated waiting for an appointment, and no doubt and knowing GOSH, ringing admissions, waiting on hold for twenty minutes, and then getting a appointment in three months time!

Still we are nearly there. I suspect I may update you sooner than a week.