Thursday, 5 April 2012

We have now come back to Portsmouth after spending a couple of days up in that there London for Anabelle's first round of therapy.

We arrived at Victoria by coach and decided to take a walk to Great Ormond Street. We had plenty of time before we needed to be there and the route would take in the sights of London. This was semi enjoyable as the hoards of french school kids constantly blocked the pavements, however if you push a pushchair straight at people, they soon get out of the way.!!!
Anabelle having her infusion
We checked in at the Patients Hotel which was very comfortable, beds-check, tv- check, en suite-check, tv-check. It also had a communal kitchen and play area, you really couldn't fault it.
At 9.30 the next morning we arrived at the Kingfisher Ward. Anabelle was weighed which made her cry, and she pretty much cried for the rest of the day, bless her!! She was due to have her CT scan done at 10.00 but unfortunately this didn't happen. Due to the fact that she moves around a lot she will require a general anaesthetic. We thought she might go to sleep and then we could scan her, the nurse sung the most impressive lullaby we had ever heard. Anabelle didn't go to sleep but they had to wake us up!!!
After the aborted CT scan we then headed up to X-rays where she had a number of x-rays taken. More tears and screams came from our little angel.
Back at the Patients Hotel
 - Happy at last!!
In the afternoon she had her infusion of Enzyme Replacement Therapy (ERT). Due to her condition her skin is quite tough which made it difficult to get the needle thing(technical term!) into her vein. They had to get a man with a special light (another technical term!) in. this light showed up her veins which enabled the needle thingy to go in. The infusion lasted approximately five hours including the period after to make sure there is no adverse reaction. Through out this period Anabelle did not want to go to sleep so spent alot of the time making sure we knew she wasn't happy.
At about 8.30 we made it back to the Patients Hotel where Anabelle was in surprisingly lighter spirits and cheerfully drank her night time bottle and went to sleep.

We would like to thank the people who have left comments and would encourage others to do so. We are all in this for the long haul so any thoughts would be appreciated.


6 comments:

  1. Love the updates. I'm glad you can still bring humour to them when I know in reality your going through hell. Hopefully in time anabelle will get use to the ERT and it won't cause her so much distress. Hope you guys managed to get through the day too. Stay strong . Lots of love, Lou & Andy xxx

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  2. so nice to see Anabelle's lovely smiley face in today's photos even though she's had a very tough couple of days xxx

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  3. Wow that was a stressful two days! Good to see she is smiling again! See you all on Tuesday. Love Sharon

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  4. Good luck for tomorrow Bellbell's, be strong and happy for Mummy & Daddy, & if yer lucky you might get a milk chocolate button and a game of blinkers with Mummy!! Your a strong little girl with amazing parents for support so I know you'll be fine. I hope it goes better for you guys than it did last week. Keep yer chin up, ill catch up with you when you get back. Lots & lots of Love Aunti Sally & Cuz Lucia xxxx

    BTW - for those of you who would like to comment I have written some simple instructions below (although I work in IT, I found this a task outside of my capabilities, I think I need a new career!!)

    Select Add Comment
    Enter Text
    Comment as = 'Google Account'
    Select Publish - you will then be redirected to the google site (Tip, this seams to work much better if you have google chrome downloaded)
    Select create account (top right)
    Fill in your details
    You will then be redirected back to this page - select Publish

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  5. Love the technical terms! Glad it all went well she looked happy to be back in the hotel. Hope her next sessions go well. Thinking of u all. Em, Jay n fin xxx

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  6. Really glad it went well yesterday,it seemed the complete opposite of last week.We are thinking of you three everyday,and how incredibly strong you both are,yes it is a long road but you know we are all here for you and will do what we can.Lots of love Kev,Becky,Jack and Adam xxx

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