This week has been exceptionally hectic and fraught,so much so that I am really glad its the weekend!
It started off with Lydias trip to the childrens hospital to get the results of her MRI in more detail,ie what it was on her spine.
Turns out it is something called syringomyelia,a disease in which a cyst filled with cerebrospinal fluid (called a syrinx) forms on the spinal cord and eventually grows and compresses and eventualy distroys the centre of the spinal cord.To say we were shocked is an understatement,horrified doesnt even come close.
she has already stqarted to lose sensation accross her shoulders and has a strange gait and weakness in her right leg.So the neurosurgeon is repeating the MRI within the next few weeks and we will then take it from there.They can operate ad put a shunt in but of course it isnt a cure and not without its risks.
Next came Joseph,he was attacked by the school bully and finished up in a&E with a suspected broken wrist!¬ he has to go to fracture clinic next Thursday to be re-xrayed.
On Thursday Seraphina was suddenly taken ill with a high temperature and cough/snotty nose.GP put her on antibiotics and Tamiflu as he thought it was swine flu she had caught.Needless to say we were really really worried about her...subsequently though she has responed well and is a lot better now with only a bit of a cough to show for it.Wont ever definitely know one way or the other whether it was swine flu as they are no longer swabbing patients bu t whatever it was it seems to have passed relatively quickly.Now to see if the is considered well enough on Monday at her pre-op to go ahead with her surgery on Wednesday...sincerely hope so as we have been waiting months for the botox!!
Then on Friday Aimee has a freak accdent with a glass with involved her going up to A&E to have her leg stitched!!!
Far too much excitement for one week!!!!!
Fundraising seems to be going well with around £900 being raised so far and a charity event going on this evening with a local DJ... hoping it raises some more towards Seraphinas wheelchair.The rep from Chunc came out this week and demonstrated the Chunc 45.Its so so light to push,just got to decide between the Panda and the Chunc seat,My Chunc rep is going to loan us a 45 to try for a week starting from the 4th August (when we get back from holiday) so hopefully that will help the decision making :)
