about my illness ... Sicher fragt ihr euch, was ich denn für ein Krankheit habe,
ich versuche es mal zu erklären:
Sie nennt sich “Tuberöse Sclerosis with cerebral seizures "
means I've node tumors" in the head, heart, eyes and kidneys ... one could remove this surgery but it would not be 100% excludable that these grow back again or the health state, this would improve ... ..
the knot at the heart, eyes, kidneys, however, does not bother her in the head ....
My life path has not been always easy, pleasant and very beautiful ...
the first was 4 weeks old times my mom when I noticed that something is wrong with me .. I had at that time in different time intervals, every now and then twitching, after 8 weeks of guesswork of doctors and numerous investigations, the shock diagnosis. ... Sclerosis ... incurable
The doctors told my mom, I would probably not reach the 2nd birthday ...
followed months of hospital stay ... I was the purest drugs guinea pig, as you all are tried, up through which also helped, well unfortunately always a certain time, then my body got used to it and we had to try new ....
with a year ago I had a stroke of my right side paralyzed, this will be good 7 years with physical therapy tries again to some extent make, I can
my right side of the body use at least back to 50% ...
went 3 years with my mom with me to a specialist clinic, they will leave no stone unturned, there was then also explains when you head out the knots in surgery would be paralyzed my left side ... that is my "good side" with which I am now all
this might not be back but with KG they produce would be paralyzed
and would remain so ... this step go the doctors and my mom does not ...
quote my mom:
"Jessica is a 7 year old baby because she can not not talk, not eating, not walk, do not understand
, just not up to the 2nd year she was only da, damit sie da war, sie bewegte sich nicht, sie lächelte niemals, sie schrie nur wenn sie etwas wollte…
mittlerweile kann sie sitzen und krabbeln und nimmt auch Sachen in den Mund…."
Seit fast 3 Jahren werde ich auch über eine Magensonde (Peg) im Bauch mit Nahrung und Medikamenten versorgt...
Warum eine Magensonde, wird man sich nun fragen… ??!!!
Mama erklärt es:
"Jessica aß vom Löffel, als sie mal wieder ins KH mußte wurde sie dort mit “Gewalt” gefüttert einige Erwachsene Schwestern gegen ein kleines Kind das sich nicht wehren konnte, so verweigerte sie (was mich nicht wundert) den Löffel und ich mußte sie wieder feed the baby bottle, well it was then denied, reason I had her they're on the world drug was always given by force and against their will, with increasing age was also increasingly difficult, until one day just the baby-bottle refused ... until the doctors agreed to be the Peg .... "
And now you know why my mom is around the clock for me ... alone because I can not do that. Thank you for everything. Thanks I also want to tell you who have read this post until the end ....
