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Updated 22 August, 2002.
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Tuesday 31st July 2001 Megan had her 3 month post-operative MRI scan today. We did not see or speak to any doctors (her neurosurgeon was operating all day) and we will find out the results tomorrow. The time seems to be passing very slowly and it is nerve-racking having to wait to find out our child's plight. We are simply hoping and praying that her tumour is gone forever.... On a more positive note, Megan seems undaunted by everything that is going on around her and continues to smile and coo at everyone :) Thursday 26th July 2001 Today marks a very special day for us - another milestone in our journey. Today is exactly 6 months since the dreaded day we were told our baby girl had a brain tumour. In just 5 days time Megan will have a repeat MRI which will hopefully continue to show that her tumour is GONE forever! She has fought so hard, gone against the odds so many times - we just hope and pray that we have beaten this monster completely! In the words of one of my very close friends....."Keep Believing". Today was also the first time Megan has eaten solid foods - rice cereal to be more precise. She loved it! Friday 20th July 2001 7 months old...and FINALLY we catch a smile on camera!
Thursday 19th July 2001 Well.....what an interesting week we have had.... Sunday, Megan started to have some 'episodes' which we thought may have possibly been seizures but we weren't certain. Monday, they continued, so I called Ward 6 West to find out what to do. After going on a wild phone goose chase and coming out the other end of it no better off I decided to take action myself. I took Megan to the GP, armed with a video of her 'seizures' ( we learnt quickly it is MUCH easier to show someone as opposed to trying to describe it in words where they ask you a million ambiguous questions!). She sent me to Monash Medical Centre to have urgent blood taken to check her Phenobarbitone (anti-seizure medication) levels and also her salt levels and full blood counts (to rule out anything out of the ordinary). The next day the phenobarb level came back within the 'normal' range and sodium a little low - but not so low that anyone believed it would cause seizure activity. (This is our new phrase of the week - 'seizure activity') Now it was the GPs turn to go on that all too familiar wild phone goose chase with the RCH. Getting nowhere quickly....it took some time for her to arrange an earlier than scheduled appointment with a neurologist at the hospital. Which brings me back to today..... Megan had her first EEG today (don't ask me what EEG stands for because that is one acronym I don't know for certain - we are only 'new' to neurology - give me a few more weeks and a few more appointments and I might just become an 'expert'!!!). This was quite an experience - she looked like a rugby player with her head taped up!!! (And a bit of a punk rocker with the tape removed!)
We then had to wait 4 or so hours until our appointment to be told the results of the EEG and to show the doctor the video of Megan having 'seizure activity' (there's that phrase again!). Because Megan is such a good girl, she actually showed them in the flesh what all the fuss was about. More doctors came in to view the video and were so impressed with mummy's skills that they actually asked if they could have a copy to use as a training tool!!! But getting back to Megan... bottom line is that due to possible scarring from 3 surgeries Megan is now suffering from 'infantile spasms' and has epileptic activity showing on her EEG. We now have a new medication to combat this. We are hoping and praying that these infantile spasms have NOTHING to do with her tumour - I guess her scan in just 12 days will answer that big question for us. Start crossing those 'crossable parts' now...... Tomorrow Megan will be 7 months old..... she is a stubborn little fighter who is going to prove all of those 'professionals' wrong!
Thursday 12th July 2001 Diabetes Insipidus and gastro we have found out do not mix. For 4 days now we have been battling to re-hydrate Megan and get her sodium level close to normal range. Today we achieved that and she maintained it so they let us go home! Monday 9th July 2001 Our run at home ended today with a visit to the hospital that has turned into a stay. Over the weekend Megan began to show less interest in her milk and developed quite a nasty cough. In the wee hours of this morning diarrhoea set in and by 9am Megan was in 'negative' balance. Phone calls to the hospital, hurried visits to the local GP and more phone calls only put off the inevitable stay in hospital to re-hydrate Megan. Mum and Dad are actually quite relieved to say Megan is suffering from the very common illness, the dreaded gastro. Hopefully we will be home in a few days and everything will return to the 'Augustynski normal'. Sunday 1st July 2001 As they say... No news is good news. Megan has weekly visits from an Occupational Therapist, and throughout the last weeks she is showing continual improvements with regard to her development. There have also been considerable improvements in her eyesight -and she is beginning to fix and follow occasionally. It is now a waiting game - where we hope that these improvements continue - and she continues to amaze and astound everyone (professionals included). | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
