Hi all. Again late I know. We have decided we will travel by train to Great Ormond Street every week and have bought a family railcard. this means we need to buy a child's ticket for Anabelle as well as ours. Even though she does not need a ticket to travel it actually works out cheaper than just buying two adult tickets. We also walk from Waterloo to Great Ormond Street and take sandwiches rather than buying expensive Upper Crust rubbish. These changes are saving us about £50 a visit. Having to think about money is something we have not had to do for a very long time, but it wont hurt us.
We arrived on Wednesday morning at Great Ormond Street to a busy Kingfisher Ward. Anabelle was soon given her pre-meds and the cannula fitted. It was second time lucky this time. The man with the light was away so the nurse had a go a using this light!!. The infusion went reasonably well and Anabelle even slept through part of it, something she had fought against on the two previous occasions. We are still waiting to hear from the Bone Marrow Team. We were naturally concerned about not hearing from them but have been put at ease by being told that this is nothing unusual. The infusion and the waiting period finished at around six thirty so we decided to get a train home that night as opposed to staying at the Patients Hotel. We finally got home about nine thirty so just over twelves hours door to door and managing to sleep in our own bed, result!!.
We have a busy couple of weeks ahead of us though with the following tests being carried out on the following dates.
25th April 2012  Nerve Conduction Study, Neurophysiology Clinic, Great Ormond Street Hospital
25th April 2012 CT Scan under General Anaesthetic, Kingfisher Ward, Great Ormond Street
26th April 2012 Enzyme Replacement Therapy, Kingfisher Ward, Great Ormond Street
27th April 2012, Multi Discipline Assessment, Child Development Centre, Portsmouth
2nd May 2012, two visits to the Ophthalmology Clinic, Great Ormond Street
2nd May 2012, Physiotherapy, Great Ormond Street
2nd May 2012 Enzyme Replacement Therapy, Kingfisher Ward, Great Ormond Street
9th May 2012, Enzyme Replacement Therapy, Kingfisher Ward, Great Ormond Street
17th May 2012, Enzyme Replacement Therapy, Kingfisher Ward, Great Ormond Street
18th May 2012, Cardiology Clinic, Great Ormond Street

After this she will only require a ENT as well as weekly ERT up until the Bone Marrow Transplant. Our biggest fear amongst these tests is the General Anaesthetic required for the CT Scan. This is mainly due to greater risks for MPS sufferers under anaesthetic.
She has now had three sessions of ERT and it is noticable how active she has become. She is no longer content to sit and clap but has turned into a wriggling little gem, I'm sure it wont be long before she is walking.
 On a final note a big thank you to those who have left comments, they help us a lot. Many thanks.