We got back yesterday tea time from a busy couple of days at Great Ormond Street.

It started with an early start on Wednesday as we had to get up to London by 10.00 and to check in on the Kingfisher Ward by 10.30. As she was having a general anaesthetic she was not allowed to have anything to eat after 7.30 that morning. We therefore gave her a morning bottle at 6.30 and then she had her breakfast just before 7.30. We knew the day was going to be even longer with a hungry child, and she, like the rest of us can get very stroppy when hungry.

The first appointment was at the Neurophysiology Clinic where a nerve conduction study was carried out. This is basically small electric charges being administered to Anabelle's hands and wrists. The Doctor explained that this would distress her so there was no point pandering to Anabelle and got it over as quickly as possible. He did this extremely well and it was soon over, with the crying stopping shortly after. The good news from this is our little one has no signs of Carpel Tunnel, a symptom of MPS. Big Box ticked.

Back on Kingfisher Ward whilst waiting for the Anaesthetist, Michelle from Physiotherapy came up and checked her out through play. This was an hour that Anabelle loved and it was good to see her laugh and play. The summary from this was that she was hyper mobile and extremely flexible in her hips and legs but slightly tight in her shoulders. The hyper mobility is actually down to her as a person and nothing to do with the MPS or its symptoms. We were also relieved that she will not require surgery for her left foot and that stretching exercises should gradually correct this.

Waiting for the scan

The Anaesthetist saw her early afternoon but required a Cardiology spot check before she would administer a general anaesthetic. Anabelle's appointment for this, though, is not until 18th May 2012. A Doctor from Cardiology however came up within 20 minutes and performed a check on Anabelle's heart with an ultra sound machine. This is similar to the ones that are used on pregnant women. The Cardiologist gave the okay for the general anaesthetic. He was happy with what he saw although she had a slight bit of leakage. We were told that this is not unusual for kids with storage disorders and there was nothing to be concerned about. After this we were taken down to the CT Scan room where gas was administered to Anabelle to send her to sleep. Leanne wanted to hold her whilst this was carried out and it was naturally very distressing to see Anabelle fighting against the gas mask whilst gradually going under. We were told it the whole procedure of inserting the cannula in doing the test and getting her to recovery would take about half an hour.  We decided whilst waiting to pop over the road to Starbucks for a medium coffee (I refuse to use the word grande!!!). It was less than five minutes later however when we got to the recovery room where she was fast asleep in the arms of a nurse who seemed to be enjoying the cuddle!!
After she had come round and had eaten and drunk some liquids we were all discharged and headed over to the Patient Hotel for the night. We had been given one of the apartments within the hotel. This actually was a nice treat with our very own London Pad for the night!! We didn't really make full use of it though as we had something to eat, watched a bit of telly and were in bed for half nine!!!

Doing time!!!

The next day we checked into the Kingfisher Ward for 9.00 for Anabelle's ERT. We are now old hands at this and by two o clock this was complete and by half five we were back home in Portsmouth. Anabelle throughout this had been an absolute little star, even though it has been a heavy couple of days for her.

We need to say that although what Anabelle has is a rare illness all the people treating her at Great Ormond Street Hospital are not just experts in their own specialist fields but are also experts in how their own fields are affected by MPS Symptoms. We really could not be in better hands.
We are also receiving additional care at home in Portsmouth and on the Friday afternoon have a Multi Disciplinary Assessment where the Child Development Centre are going to offer help and assistance with her developmental skills.

On a final note for this blog Terrie, Paul and myself have entered the Great South Run ( I need an excuse to get rid of my beer belly!!) for the MPS Society and will post more details later.