Joined: 03 Jun 2008
Location: Randburg SA
|Posted: Sun Jul 06, 2008 10:41 am Post subject: From South Africa
Heather and I (Dave) looked forward to parenthood and on October 14th, 1998 Heather gave birht to Michelle. Full term and no apparent problems.
But the day after having given birth the meconium hadn't past and, well that was the start of a long and difficult road, as all of you probably know.
At three days a colostomy
At three weeks after birth a repair of the aorta.
Two reversals (2 years and 5 years of age, unsuccessful)
Septesimia (DIC and nearly died)
Skin grafts to repair the damage occasioned by the above
Disformed feet (both, the first operation a probe damaged her right foot, and at first reversal age 2 the left foot and lower leg, growth plate, affected by the DIC)
Lots of therapy
There have been many other hospitalisations and this year Michelle has been admitted to hospital with UTIs every month. Some of these were really bad. She s developing a resistance to antibiotics (multi resistant pseudomonus) and is on some really heavy experimantal drugs. Toxic but it does the job.
Yet Michelle, when reasonably healthy, remains very happy and cheerful.
She managed to learn to swim (well, kind of), goes to a special school where she is made to feel very welcome, enjoys most Walt Disney's animated DVD/videos, manages to play simple CP games and is absolutely mad about Shania Twain (did you know you can wear out music DVD ?) and Andre Rieu. Music is a big part of her.
Being in SA I am very nervous about our future in more ways than one. Our medical aid (Discovery Health) has actuall been quite good and the remaining doctors in SA are thankfully still well qualified and able (provided you have the means and live close to Johannesburg or Cape Town).
However, I am a Duth citizen and Michelle has a Dutch passport and we are considering (planning) to move back to Holland and would greatly appreciate the Dutch parent getting in contact with us.
I also extend my appreciation for the work and commitment Dave Cury is putting into keeping tihs forum going. Thanks Dave.
Sorry, it is a short message but this year has been though with all the time in hospital and with the lack of support both Heather and I are tired.
But I promise, more to follow.