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Lia's World
We've survived ONE ENTIRE YEAR !
Lia was born on 27 July 2004 as a healthy little girl. The first 4 weeks of her life were typical of any baby - eat, sleep, poop, burp. At exactly 4 weeks to the day, Lia had a massive bleed in her brain. Her condition detriorated rapidly and was given less than 5% chance of survival.
Through the phenomenal support, prayers and strength of all of our friends, family and even people we are still to meet, Lia miraculously recovered. After spending just one week in hospital she was sent home.
The next month of her life was as normal as possible. Amazingly, at the time, there were no visible side effects from her bleeding episode. At 8 weeks, she was diagnosed with Biliary Atresia. On 2 October 2004, she underwent a liver biopsy and the Kasai procedure.
We have decided to keep this journal online for Lia. Please read through the Journal History for her complete story.
We thank all of you for your love, support and prayers without which we would not have had the strength to see Lia through some tough times.
Lots of love,
Aslam (dad), Fiona (mom) and Khaleel (big brother)
Lia Khan
Born: 27 July 2004 Weight: 2.37 kg Length: 48cm
Journal
Monday, October 17, 2005 3:01 PM CDT Time has really been scarce recently...for Fiona and I.
We have made it to one year and a bit! There has been many moments in the past year where this point time was not even on our radar. You never forget your ordeals (and triumphs) but often you forget the intensity of the moment.
So what where we up to last year at about the same time...
Tuesday, October 12, 2004 9:09 AM CDT
Sorry everyone, we missed our entry yesterday but we have a good reason for this....LIA WAS SENT HOME YESTERDAY....YEAH,YEAH,YEAH!!!!
...and 2 days later
Thursday October 14, 2005
Well it has been 4 days since we have been home. Not as easy as I thought it would be, but it feels great to be in our space again. Lia is doing very well considering all that she has endured. Her poop continues to be a mustardy yellow with occasional streaks of green. This is good and we pray it stays this way.
...and so our lives where focused on poop color...
Sunday, October 17, 2004 1:47 pm CDT
We have managed to get through the week without major incident. The good news is the Lia's steroid treatment has been reduced to 2mg once a day.
... a few days later...
Thursday, October 21, 2004 7:40 pmCDT
Aslam and I didn't realise how emotionally drained we have been and were clearly just surviving of adrenaline. As soon as Lia came home, Aslam and I both got sick. I think our bodies just crashed from the strain.
...
She is continuing to drink all her feeds and we have increased to 70 ml per feed.
...
Yesterday we did bloods (again!). The incompetent lab person took 20 minutes to get one vile of blood. In all that time Lia just screamed and screamed.
And now about a year later we're up to 100ml feeds with a ton of supplements but we don't do the poop analysis. Phew!
Lia's last bloods looked pretty impressive. Biliruben at a normal level, proteins look great and even GammaGT counts have come down significantly. This is really brilliant as it shows that there isn't any rapid deterioration of her liver. In fact, we think that she's a successful Kasai which is not at all commmon.
This gives us an opportunity to concentrate on her neurological and physiological development. Fiona spends a lot of time each day with Lia, working those muscles that her brain has "forgotten" to use. She can now sit for a few minutes unaided and tries, at times, to play with both hands. Lia has started to understand a few words as well. She can even lift her hands above her head. There is just so much you take for granted when you're normal
Right now she is such a bundle of joy. She does not stop gurgling and "talking" the entire day. Smiles most of the time and has a bit of a temper, as well.
If only she did not have that massive brain haemorrhage at 1 month.
Aslam
Read past journal entries
Links:
http://www.classkids.org Children's Liver Association for Support Services
http://www.classkids.org/library/biliaryatresia.htm Information on Biliary Atresia
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