Thursday, 10 May 2012

Getting used to this now!!!
Hi. Not a huge amount to report this week. Anabelle had her 6th infusion yesterday. It took 4 attempts to get the cannula in. In the end they had to get the man with the light back who managed to get it into her left foot. Bless her with her bruised little hands and feet. Although she kicked off throughout the insertion she soon settled down afterwards. I think I have mentioned it before that due to the MPS they have tough skin which makes it difficult to insert a cannula.
There has been no real feed back concerning a meeting with the BMT Team, but we have been told that the transplant will happen in August and is currently being scheduled in. The Enzyme Replacement infusions will continue up until this date. The infusion yesterday went fairly swiftly and Anabelle even slept through part of it. She is becoming more active week by week and on the way home she amuses all the commuters with her giggles and waves.
As we have an appointment with the Cardiology Clinic on Friday 18th May the infusion that week has been switched to the Thursday. This means we only need to spend Thursday night up there (my birthday by the way!!!).
We have also set up a JustGiving page and Team for the Great South Run. The link is   http://www.justgiving.com/LRShepherd and is also pasted on the right. If anyone would like to donate to the MPS Society or join the team it can be done through there.


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9 comments:

  1. Terrie10 May 2012 at 13:37

    She looks so settled, you would never know she'd just gone through all that with the Cannula xx

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  2. Anonymous11 May 2012 at 14:39

    We are so pleased to see Anabelle is doing so well,as well as the both of you.What a clever girl to be up walking with the baby walker,as you have said the ERT is having such an impact with her.Lots of love xx

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  3. Lee13 May 2012 at 14:09

    Sally told me about Anabelle and I am really sorry but just reading all your updates and you both really are amazing parents and an inspiration, Anabelle is such a beautiful brave little girl and all the pics are lovely as she is always smiling, stay strong and sending you lots of love Lee & Family xxxx

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  4. Kelly16 May 2012 at 01:19

    So glad to hear so much positive news over the past few blogs! The photo's of Annabelle are beautiful and she continues to amaze us with her strength! I've entered the Great South run. Ran 3.5miles on Saturday......a bit more training needed I think!!! Happy Birthday for Thursday! Thinking of you all xx

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  5. Anonymous21 May 2012 at 08:09

    She's doing you proud.Such a fiesty little thing. You never say she is having a bad day etc. So go go Anabelle. You are always in our thoughts love John and Sandra x

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  6. Anonymous1 June 2012 at 10:29

    Goodness, would'nt want to play scrabble with you, a dictionary of words I have never heard of before! Well with a date in mind you know where you are now. Look forward to the next blog. Go go Anabelle, you have done so well. love John Sandra x

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  7. Sandra6 July 2012 at 00:24

    Sandra, things are happening so quickly now, all positive I hope reading your updates. Love to all Sandra and John. x

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  8. Anonymous17 July 2012 at 12:47

    What a beautiful little girl, i know what you are going through i have been through it all myself, my son also has hurlers he is 16years old next month, he had a unrelated bone marrow transplant at 20 months, it all seems a lifetime ago but reading your blog has brought it all back,my heart goes out to you and i wish you all the best, i shall keep myself updated on her progress with your blog xxx

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  9. mary baker1 August 2012 at 02:03

    can't tell you how much we miss you all, just keep thinking how good it will be when you are home and Anabelle is on the mend lots and lots of love xx mum

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