What are we supposed to do?

This morning we arranged for two carers to come at 7.45 am so that we could leave by 8 am to head to Sheffield. Two hour journey to a hospital we had never been to not knowing the parking details etc. We managed to find the place with no problem and despite the fact that the traffic came to a hault on the A17 not long after we left home we did surprisingly well to arrive soon after our appointment time...we even managed to aprk right outside the door of the clinic...a good start!
The receptionist was very pleasant, assured us that 4 minutes late was not a crime punishable by death and gave us a number to ring should we ever feel we were going to be more than 20 minutes late in the future!
No sooner had we sat in the clinic than we were called to be weighed. Then we sat for 1/2 an hour wondering what we rushed for!
A Registra called us in to take a detailed history. Not always easy to do for an adopted child but we managed to give the information we did know and mostly in chronological order...popping back and forth a little remembering details I had forgotten to mention. The important events I repeated.
ie. the fact when she had a stomach upset back in September 05 she became very ill very quickly, unresponsive and once in hospital we discovered her blood sugar was exptremely low. She was treated with a bolus of glucose and then a glucose drip and recovered reasonably quickly. just over a year later she again became ill with a vomiting bug and again became unresponisve and was admitted to hospital and treated with a glucose drip.
I also pointed out that she had always been difficult to feed but had managed to feed orally for the main part with occasional NG feeds when unwell, until February 2007 when she had an aspiration pneumponia and lost her swallow ability completely, as a result she is now totally PEG fed.
Over a period of 6 months in 2007 her kyphoscoliosis developped from 22o -40o+ her back is now very visibly twisted and affecting her posture.
THen the significant event that led to this recent bout of admission and surgery and MRI
she woke on the morning of 5th June with severe breathing difficulties. She had a run of apnoea's that needed stimulation to start her breathing again, she was admitted to hospital and treated with oxygen and antibiotics. Then referred to ENT.
ENT investigations led to removal of Tonsils and adenoids which has improved the breathing issue, although still some degree of desaturations but not needing oxygen for the last 10 days,
Her heart rate is often rapid particularly when she is sat in her chair rather than laid down.
She is frequently very fatigued, often sleeping for two long periods in the day.
She is much floppier than prior to June 5th, her right eye has dropped markedly.
Her eye movement has deteriorated since her last Orthoptic appointment, her vertical movement has always been extremely limited, it is now non existant sh eis unable to look up or down. Her horizontal tracking has always been good, it is now markedly deterorated.
Eve had gradually developped some head control over the two years she had been with us. She often flopped her head forward when sat in her supportive chair and with encouragement she could lift it and hold it in midline for a short time. Now she can not hold it without reclining her chair and certainly has no ability to lift it from flopped forward. She also struggles with tracking people as her ability to control the turn of her head with her eye movement is not there.
Since her surgery in July Eve has had lots of myoclonic jerk. These wake her up in the early morning they prevent her getting back to sleep. They also disturb her in the day when she is getting tired. and occur at random times in nbetween to a lesser degree.
We have noticed myoclonic jerks in the past but these are now much more frequent, mor violent and distress her!

Eve was enjoying standing, enjoying using her walker and enjoyed being up with her peers in whatever they were doing. She really struggles now in her stander, her head control is so poor that it needs to be reclined significantly to enable her to keep her head up, she can then not participate with the activity on her tray.
other concerns we have revolve around the information from Nottingham at the time of the MRI,
THe consultant was very nice to start with, listned to the reg giving his summary. The reg managed to miss some important facts out but I was ready to but in...the consultant then picked up on the myoclonic jerks. HE wants to do an EEG to define whether they are epilepsy related or not.
I wanted to ask him about other concerns but he was now keen to move us on as he had many more patients, I asked about the MRI and the fact that it seemed to be pointing towards Mitochondria and the Neurologist in Nottingham was expecting them to investigate for other markers for Mitochondria, he was very dismisive, felt that we needed to ascetain whether Eve's problemns were Cerebral palsy or something else masquerading as Cerebral palsy. He felt that the clinical evidence was not enough to push towards invasive tests, HE said that miotochonrial cytopathyies usually follow a pattern of loss of skills and he did not see that in Eve's history...

So loss of swallow, cough, head control, abilities of eye movement, abilities to use arms and hands functionally was not loss of skills?
I am now confused and angry that he would not give me time to ask my questions. I feel we have achieved nothing and am so confused that he seems to now be totally backtracking on what Nottingham have said.
I hate not knowing! We have had 3 weeks of worrying about the MRI results, of believeing that all we thought we knew was now not so, and now we dont know if any of it is so. Apparantly there are a lot of other possible reasons for Eve's underlying condition and we need to find out which one we are dealing with....yes I would agree with that but how are we going to find out if He wont even acknowledge what is put before him?
We even had a to do with the cashier about claiming traveling expenses, first we didnt have a certificate of attendance. So we trotted off back to the clinic...a good 10 minute walk, then back to the cashier, oh the certificate was for a children's hospital appointment so we would have to claim from Children's hospital....but our appointemnt was at this hospital...sorry we can't refund a children's hospital appointment! Argh Children's hopsital is 3 miles away...so we set off back to the bus, 10 minjutes walk away, and headed off to children's hospital. The parking there is diabolical, we eventually got parked and trotted off in search of the Cashier...I think they were upset about soemthing too but I cant actually remember what it was...it took a fair while to sort it and get our fuel costs refunded....only at 12 p per mile it comes no where near...you would need to be getting in excess of 40 miles per gallon in a pertrol vehicle to do it on that! We drive a very large WAV that does around 30 to the gallon on Diesel....now I am whinging!
We eventually arrived home at 5.15 tired and sad.
Rosie has gone to respite today until Saturday afternoon. I do hope her temporary feed tube lasts as I have no intention of collecting her until Saturday! I have had a phone call to check some medications but so far amicable. I need some respite honestly!
Tina!