Hi All! Hope you had a good Halloween!! Amelie managed to make it outdoors to go ‘trick or treating’ and had a lovely time, although completely wore herself out!!! Then, like a typical tube fed child, collected all her sweets together and handed them out to her sisters as she wouldn’t eat them!! I think that’s one of the advantages to her big sisters that they like best!!
So we went to see the Spinal Surgeon at the beginning of October and Amelie herself, made sure that he knew that her back had been hurting A LOT over the past few months! I wondered if she had been trying to have a “grow” and that it may be causing pain. Another concern was that she has actually lost 2cms in height!! That is NOT good!! We measured her numerous times, but got the same readings – she has gone from 110cms to 108.4cms – so again wondering if her spine has curved some more.
I was very concerned about this because any parent of any RSS child, just wants to achieve optimum height – and here we are going backwards??!! So he booked her in for an MRI scan so he can have a look at what’s going on.
So since then, we battled on with antibiotics to try gt rid off these infections in her water and round two of her stoma sites! She eventually improved, just in time for another admission to manchester!!
This was just a quick overnight stay and a quick visit to theatre for some investigations under anaesthetic by the Surgeon who will be performing her big operation at the end of the month. We had the usual traffic NIGHTMARE on the M62 and the journey both there and back took over 2 hours!!! It was very stressful – Amelie in tears, in pain with her back, feeling sick etc etc and me trying my best to console her but not being able to stop the car!!!! Need a private helicopter!! Ha Ha!!
Anyway – it was made worthwhile as we were given a private side room!! Never in 8 years of admissions have we had that!! It was heaven!! FINGERS crossed we can have one next time!!
So the investigations were done and Amelie was so brave having her cannula in this time! She was even telling the doctors which vein to use!! But in true Amelie style (which is a bit unfair as not her fault) yet ANOTHER problem was found. Apologies for not expanding on this – it is a bit delicate and I need to protect Amelie’s privacy for this one. It has worried Jon and I but we will get some answers next Weds 11th when she goes for her spinal MRI scan where they will look at other anomalies for us.
It’s been and still is on our minds every day, along with the fact that I have to get Christmas all organised before we go in on 26th November – 20 days and counting and feeling very stressed!! Am sure it will all be ok!
I will post quickly before we go in – and whilst we are in – keep an eye on my LIVE NEWS page as I will be able to post there regularly via Facebook ! x