Camille is born on 22 of march 1998. An in uterine stop growing and no more enough amniotic liquid, both from unknown origin, need a delivery with a caesarian started at seven and a half months pregnancy.
Camille's weight is 1650 grammes. A cordocenthese (sample done in the umbilical cord) done not a long before birth don't note something wrong about the karyotype.
Camille stays one month in a incubator where she gets weight with difficulty. She is feeded with gavage syringes, a quite barbaric name for a so little girl. Back home is rather good but we are a little bit lost in front of a so small baby. Then, in september, the first health troubles begin.
Camille has her first bronchiolitis. Others follow very frequently requiring most often hospitalization. Every time Camille has many and many exams giving stress for her and for us and the cool reception given sometimes by the medical personnel is really hard to bear. She has many "sweat test" to diagnose cystic fibrosis, many radios, blood tests, bronchial fibroscopie, a bronchial scanner.. Finally, in january 1999, after many months of search, a "bronchomalacie" is diagnosed : a shrinkage on one bronche that stops secretions natural rejections. The lung specialist gives her an antibiotic therapy that changes every three weeks and these for during several years. Raining and wet times occurs relapses and Camille is again affected. So, she has respiratory physiotherapy sometimes twice a day. The everyday living turns around those appointments. My timetable, holidays, leisure, the Camille health status just decides of everything. We begin to see some delays in Camille behavior, mainly for the motor one. At 10 months, she is still not able to stay seated for example. At the beginning, we thought it was due to the premature birth but weeks after weeks it's now evident it's not the reason of all. The bronches cured, a new exam battery is done this time by the neurologist : electromyogram (looking for reasons of her hypotonia), EEG, MRI, PEA (hearing test to know why she makes none sound). Everything is ok. Camille is still a mystery. Maybe more for the doctors than for us because we just see in Camille a lovely little girl, plenty of life. The neurologist says us "let her time". Words heard so often when doctors don't have explanations to give us about delays, differences, questions. Camille needs a bit more than one year to get seated alone, two years to walk with help and nearly three years to walk alone, although she wanted to since a long time. The other evolutions are quite the same. When she is about one year old, she begins to prattle but stops suddenly. No more sound, no word, she is like dumb.
We would have to wait until she is three and half years old to hear her first word : "mum" of course. Camille is able to eat alone when she is about three years old. She is potty-trained (only daytime) when she is about five. The progress are slow, very slow, but always there, and so, we still have hope. Almost everyday Camille is doing something new that make us happy despite of all the difficulties. In october 2004, we ask for new genetic searchs because we are tired of not to know what is the reasons of delays of our daughter. The geneticist looks for Fragile X Syndrome and she finally discovers Camille has a 22q13.3 deletion.
Creation date : 26/03/2007 · 14:19
Last update : 16/11/2007 · 12:11
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