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Updated 22 August, 2002.
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Monday 27th August 2001 On the request of our neurosurgeon, Megan visits our local Maternal & Child Health Nurse to have her 'measurements' checked - the most important being her head circumference. This needs to be checked for 2 reasons - one to confirm that it does not suddenly increase in size, not in proportion to normal growth charts - possibly indicating the increase in fluid and pressure - not good. And two, to ensure it does in fact continue to show growth, as there is also the other end of the spectrum, where by her shunts may actually function too efficiently and shunt off too much fluid - in which case we would have to look at clamping, or removing her shunts earlier than planned. So, we visited the Nurse last Thursday, only to discover Megan's head had only appeared to have grown 1mm in 2 months - not quite 'normal' (normal growth would have actually been about 15mm). Hurried calls to the hospital to confirm if this was either good, bad or all OK were made but not many clear answers were given. Which brings us to today.... Finally Maggie (the all-efficient Ward Clark on 6 West) came to the rescue and organised in about 30 minutes what I couldn't achieve in 2 days and an appointment with the neurosurgeon was arranged for 12:15pm. Naturally we feared we were in for another hospital stay, with the shadow of surgery looming once again. Our fears were soon calmed when we met with the Neurosurgeon who confirmed her own measurements from last month to this month to have shown growth - and that is all she wanted to see. So, after our little storm in a teacup, all is continuing to be well. The Neurosurgeon wants to try and hold off for as long as possibly before tackling the shunt question - do we or don't we leave them in? - to give Megan as long as possible between surgeries. One point she did make is that Megan may actually still require the shunts, and by clamping them off to check this, may in fact lead her to become ill again with the symptoms of hydrocephalus. We are more than happy at this moment in time to wait as long as possible before having to deal with a 'sick Megan' again. While we were in the hospital we visited all of our friends on 6 West and no one could believe how different she looked. That is because they remember 'sick Megan' and now they are just seeing......Megan :) Sunday 26th August 2001 This week at home from our 'holiday' has seen 2 milestones achieved. Megan is now 8 months old and it has been 7 months since diagnosis. We have had fairly 'event-free' weeks with nothing much new to report.
Friday 10th August 2001 Given the all clear by all doctors, the "girls" (this includes mum) have gone to Adelaide for the week. Thursday 9th August 2001 Megan had an EEG today which unfortunately continued to show "seizure activity". In basic terms this means the medication she has been put on worked sufficiently well to stop the outward signs but has not controlled the activity. Her neurologist has increased her dosage with the hope that will work. When she was first diagnosed with infantile spasms she was put on a very moderate dose of Sabril with the idea of working upwards if required. She will have a followup EEG in one month's time. On a positive note the infantile spasms appear to not have affected her development in any way which is a usual side effect in most babies. Wednesday 1st August 2001 What a day! Nothing but good news - the way it ought to be! .....scan showed no evidence of tumour recurrence..... What a sentence! Next scan is in 3 months. It is such a relief to have made it this far and now we have an opportunity to focus all of our love and attention on helping Megan make up for the last 6 months where the word "tumour" dominated her life. Looking forward to moving forward. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
