At Last We Feel Listened to!

Today we visited the Neurologist. It was a well planned trip....until school managed to wreck all our plans by phoning at 6.45 to tell us school was closed due to a drainage problem....ARGGGGGHHHH!

Quick thinking required! The plans were for me and Eve to go byAmbulance Transport...leavingDavid and Iris to get the rest ready and to school...Iris would then returnat 3.30 to meetRosie and Jonathan off the bus whilst David collected Christina and Joshua. The two of them would then be able to cope until I got home.

The big problem with Jonathan and Rosie not being in school was Rosie! It is just not safe for one of us to be homealone with Rosie...if she has a problem it takes two people minimum to sort her out! So the options open were cancel the appointment...or we all go!

Then thinking again if iris could perhaps get Joshua to school, ask Melanie to have Christina before school and take herin with her boys, then Iris could collect Joshua after school and come back here! Christina had an invite to tea with a friend so asked if she could stay there till we got home...a few Phone Calls and we were resorted...just had to remember to cancel the transport first thing in the morning!

Phew...8am and everyone was more or less organised and getting into various vehicles...I had left the pictures Iwanted to show the neurologist indoors so went back for those whilst David Clamped the girls in the bus. As I was leaving the h ouse again I heard the familiar peep peep of the school bus reversing....ooops no one had told them school was closed!

The journey to Sheffeild was really good until we approached the outskirts of the city...wewere way ahead of timeso decided to stop for a drinkand a snack...the clinic we were ing to had no facilities for food and drink so it was a sensible idea to stock Jaonathan and Rosie up at least...David and I needed coffee too by now...so we pulled into Morrisons and enjoyed a late breakfast!

back on the road we managed to get ourselves into an ever decreasing circle...ignoring TomToms pleas to turn right again we decided to go left and leftagain...Tom Tom then rerouted us back on to a main road and then we were on famliar territory...we pulled into the cinic car park 10 minutes after our appointment time but no one was cross.

Eve was weighed and measured...we were sent off upstairs and sat to wait with the threeother families there....before lon we were calle in to see he registra....he was very nice and very thorough and listened with interest and concern to what we had to say...he wrote copious notes, lookedat our photographs and then did a thorough neurological examination of Eve. after much more conversaton he then went to fetch the Neurologist who arrived with appologies for keeping us waiting...he greeted Rosie who was very confused that she was not the centre of atention this was HER doctor! she settled to thebox of toys again though and allowed us to continue our converstions. Dr R had received letters from several professionals who had all born witness to thedeterioration we were trying to explain...yesterday wehad seen the Physiotherapist who had kindly gone backtoher office to email her report through to him last night.

With all the evidence before him and our history he agreed that the MRI in July had hilighted concerns that were being born out by whatwas happening. He therefore wanted to admit Eve to the Children's hospital for further investigations. These will include a host of blood tests covering a broad range of concerns...he also wants to test the cerbrospinalfluid and urine and to do a muscleandskin biopsy...he is keen to do all of this under one anaesthetic,bearing in mind the problems Eve has encountered with her two previous aneasthetics he wants to plan an overnight stay and probably alert PICU too. Some of these tests need to be done on either a monday or Tuesday to allow for time to process and follow through before the weekend...from our point of view a Monday would be best as it is easier to ensure cover for the others that way!
by the timewe left e had been there for over 2hours....somewhat different to the rushed and inconsiderate consultation in august....i am so glad we requested Rosie's neurologist. I had been wondering if we should have stuck with Nottingham after the last visit but now I am glad we trusted Dr R.

we had a reasonable journey home too...God was preparing our wayI am sure...we stopped at the Friendly Farmer restaurant on the way home...Jonathan and Rosie tucked into a meal but David and i were still full from Brunch
david enjoyed a Sausage Roll and I had a carrot cake...very nice!

Home at 5 pm...it was a long but worthwhile day!
I need sleep now.
Will pray for that tonight!