Sorry a couple weeks late I know., but here goes.

17th and 18th May 2012.
After arrival at the Kingfisher Ward on the Thursday morning a bed was assigned to Anabelle and the process of inserting the cannula began. Vikram, (the man with the light) was in intensive care and was therefore unable to attend. So it was left to Sinead who found a vein in Anabelle's arm and managed to insert it first time. The process was very quick with little stress to Anabelle. Her seventh infusion went extremely well and finished at around half four. Anabelle is getting more used to the infusions as the weeks go by.
Whilst the transfusion was happening we were were given the date for the bone marrow transplant. The date they are working to is 10th August. Relief and worry all at the same time!! Someone from the bone marrow team is going to come up to us in the following week to answer any questions we have. A meeting has also been arranged for the 20th June to talk specifics and to go through the technical stuff.
We have also been advised about her GAG levels. Her reading at her first appointment was 156, an unaffected persons generally are around 20. By the 2nd May Anabelle's GAGs have reduced to around 70. This is good news. Hopefully they should have reduced even more.
As it was my birthday we went to the Italian across the road for a meal before retiring to the patients hotel for the night.
The next day began with Physiotherapy at 9.00 am and Anabelle was grumpy through this. Cardiology then followed. This consisted of a ECG which she slept through then a Echo she was awake but I rocked her to sleep. We then saw the consultant. To sunmerise she has noraml heart sounds with no murmurs and no added sounds. She has very slight leakage of the Mitrial valve and even slighter leakage on the aortic Valve. The leakage is so slight that it couldn't be picked up by a stethoscope. MPS babies generally suffer from heart problems due to the Mucopolysaccharidosis. Basicallly Anabelle is asymptomatic from a cardiac point of view and only has mild cardiac involvement from her MPS. Good news indeed.

23rd May 2012
Infusion number eight was very smooth and the process very efficient. Anabelle is getting more and more active as the weeks go by. As suggested by the Physiotheripist we bought Anabelle some new shoes. Now all she wants to do is be on her feet. She has also learnt to point and to pull herself onto her knees. She is such a fun smiley child who always seems to be in a good mood, aprt from in hospital that is. It would be nice for the nurses to see her cheerful side!!. In the afternoon Victoria brough Nicky from the Bone Marrow Team down to answer any inital questions we may have. I think we kept them for about two hours. The 10th August is the date we will be working to although this is not set in stone as other factors may affect this. The cord cells are sitting in a jar in a fridge somewhere waiting to be united with Anabelle. Some of the things that we had been told at this time are that her treatment will start with Chemotherapy. This will be classed as day Minus 8 which will then count down to Day Zero which is when the transplant will take place. Only one parent will be able to stay on the ward over night with Anabelle and freash clean clothes are required every morning and night. No wooden toys or soft toys are allowed, generally only things that can be wiped down with no intricate parts where mess and germs can harvest. We will need to work out what to do with regard to the accomodation issue as this will need both of us with Anabelle.

Anabelle and her mummy

The next date at Great Ormond Street is 30th May 2012. the only thing that is due that day is her 9th infusion.