Another busy time at Great Ormond Street, but plenty of positives to be taken this week.
We stayed over on Tuesday night for an appointment with the Ophthalmologist (eyes) first thing Wednesday morning. The first appointment confirmed that she pretty much had 20/20 vision although they found it difficult to keep her attention on the task in hand. Well she is fourteen months old after all!!! They then put some eye drops in to dilate the pupils to prepare her for the second appointment. Fortunately she fell asleep which was a major bonus as the various test were carried out by raising one eyelid open and then the other. Apart from stirring a couple of times she didn't even notice. What could have taken ages to complete with lots of hysterics was completed easily within five minutes.

The potential effects of MPS on the eyes are clouding vision, intolerance of bright light, glaucoma and damage to the optic disc where the mucpolysaccharides build up around the nerves. The results from these tests showed that Anabelle does have some clouding but this is improving through the ERT infusions. She also hates bright lights but again over the last few weeks she is more tolerant of this. The even better news though is that Anabelle has no signs of glaucoma or damage to the optic discs.

Future Musician!!!

After our stint in the Ophthalmology Clinic we went back to the Kingfisher Ward for Anabelle's fifth infusion. Our specialist nurse, Victoria told us that the results of the CT Scan had come in and she confirmed some more good news...... There is no evidence of Craniosynostosis (I've tried to limit the big words but there are just too many!!). This basically means that there is no issue with how our little girls head has fused. there was also no fluid on the brain, these two items are symptoms of MPS and we had been nervously awaiting these results so it was amazing to hear of things that Anabelle doesn't have as opposed to things that she does.

We were also given the even better news that the BMT Team had been in contact and that they have a 10/10 cord match for Anabelle!!!!!!!!!!!!! July as been touted as a possibility for the transplant but I have a feeling it will be in August. This is great news although daunting. Our only niggle is that we will be in London whilst the Olympics are on. Me personally I'm really not fussed about the Olympics. If it was the world Cup however that would be a different story.

We will be setting up a JustGiving site for the sponsorship for the Great South Run for the MPS Society. Kate and Paul have also entered the Great South Run.(Well Done & Thanks)
We also need to mention the good people of N.A.T.S. where Anabelle's Aunt Sally works. (no not the one from Wurzel Gummidge for those old enough to remember!!) They have been doing some fund raising for the MPS Society and have raised lots of money already and other events planned. Don't forget it is MPS Awareness Day on 15th May 2012, where everyone can do their bit. 


N.A.T.S. They do more than keeping our skies safe!!

We are very fortunate to have such good family and friends who have been there for us and would just like to say a massive THANK YOU.  We are also overwhelmed with the support from people who don't know us personally but have taken the time to read our little blog and even comment.