Daily routine. I spend my days in kindergarden - that is a kindergarden with normal kids, and there is a section with 8 children with speci- al needs. It works fine with normal and special children to- gether - and when we (special) children need more time by our- selves, the door between the "normal" kin- dergarden and the special needs section can be closed. I have fysiotherapy two times a week in the kindergarten. My fysiotherapist dis- tributes a bucket to bath in, so I can sit by my self - not a thing I can normally do - It is a thing I really enjoy. If you would like to see how it works, please look in my photoalbum or visit the fysio- thereopists homepage - just click here . I am a very happy and joyful girl, and my parents knew that another child would fast outgrow me both fysically as mental. So they decided to have another baby before I became too much aware of it. So on Decem- ber the 31st 1999 my big littlesister Jennifer was born - so much different from me as can be. She was (and still is) big, nearly bald, have hands and very demanding - but funny - I will not have eyecontact with her, but when she smears food all over her I have to laugh - but when mom or dad takes her up instead of me - BOY can I get mad!!! - but normally I dont take much notice of my sister - she is just there - just as our cat. The past ½ year Jeanette has more contact to her little sister - she loves to tease her, and laughs when Jennifer dances and performs for her. Many things has happened in Jeanettes life since this homepage was made. January 2001 she had a Nissen surgery done, which we are convinced that saved her life at that point. At the same time she got a Mic-key feeding button in her stomach - we can realley recommed this - now she could get food and medicine even when she was too ill or tired to eat by herself. October 2002 she started having reflux again, but that could be handeled with medication (losec and gaviscon and Aloe Vera juice). November 2002 she started to sit up herself, and loved it. February 2003 she "walked" sitting on her behind - it goes VERY FAST!! During the past couple of years Jeanette has been seeing a chiropractor several times a month. She had tension in her neck, shoulder and lower back when she moves in many strange and for us impossible ways. We are convinced, that the visits to the chiropractor has had a very positive effect on Jeanette - she should not use energy to feel pain and discomfort, so she used her energy to be a part of our world in stead of living in her own tiny "universe". She became joyful, playful, naughty and when she was well she laughed and teased us - she loved it. Unfortunally she had surgery for volvolus (malrotation of the bowel) in october 2003, which made her very sick. At the same time her reflux got worse and she became self injurus, mostly on her hips, which dislocated several times. She should have had surgery for this, but we decided to wait untill her second reflux-surgery had been done - she had the surgery in march 2004. Unfortunally she was too damaged inside, so she did not survive the surgery. Added to her severe refluxproblem, the surgen told us that her scartissue were so overproduced that most of her entrails were growing together. A thing that happens sometimes, we were told. We were also told that the scartissue most likely was the reason for her volvolus in october. We were told, that if she had survived the surgery, then it would NOT have been possible to make any form of surgery on her again - ever. If you are a parent to a child with Cdls and are facing any of these challenges with surgery of any kind or anything else, we would be glad to help you with our support and advise. Please feel free to contact us - our e-mail is levisen@stofanet.dk Thanks, |
To Jeanettes hompage about her life with Cornelia de Lange Syndrome 9/6 - 1998 - 15/3 - 2004 |
My name is Jeanette Levisen. I was born on June the 9th 1998 in Aalborg, Denmark. I have a rare dis- order called Cornelia de Lange Syndrom (CdLS). If you would like to know more about CdLS please push this . |
MY PICTURES |
E-MAIL ME |
Birth and diagnosis. I was born in week 37 by c-section after a normal pregnancy. After a routinechek at the doctor my parents was sent to the hospital - the doctor was afraid that I had stopped growing during the past week or so. After two long ultrasounds - all in all it took around 3 hours - there were chocking news!! The baby was far too small for date and did not move at all during the ultra- sound - missing some fingers etc. My parents were told that I probably would not survive, and if I did, I would pro- bably be braindamaged and not have all of my fingers etc. My parents were told to prepare for the worst, as the doctor thought that I was one big chromosome error - in that case I would not be normal to look at, and most likely I would have passed away within an hour. So - when I arrived my parents were pre- pared to se a new Frankenstein - but they got me - a little pretty doll with lots and lots of black curly hair, long eye- lashes and the cutest little face - and I lived!! My parents were overwhelmed and happy - It did not matter that I was not like any other baby, and it did not matter that i don´t have any hands - just one tiny finger in the end of each bowed arm, nothing mattered as long as I survived. Within the same day the doctors told us, that they thought that I had a syndrome called Cornelia de Lange. They knew other children with the syndrome at the same hospital, so they knew that some have heartdefects - so even though my heart sounded ok, I was send to be scanned - better to be safe than sorry!! I was also send to an eye specialist before i was allowed to come home. I still visit the eye specialist several times a year. |
BIRTH AND DIAGNOSIS |
Medical stuff. Eyes: I had Ptosis (heavy, droopy eyelids) when I was born. I had difficult to see any- thing, so I had a Ptosis surgery when I was around 14 monts old, and it totally changed my world - I could see everything, and I just laughed and was very surprised over this new world. Everytime we are go- ing to the eye specialist for check ups we are always told that it is a fine job they did - if the doctors praise themselves - then it must be a good result!! In May 2000 we found out that I had be- comed more short sighted, so I had glases - my glases have build-in sunglasses, so my eyes dont hurt when the sun shines. Ears: Like many other with CdLS I too have a hearingloss, and I have very petite behind the ears hearingaids. I like those too, but of course I sometimes need to have the hearingaids removed, so I can calm down, and close the rest of the world out of my world - I need that once in a while. Reflux I have reflux - that is when the stomache acids run back into the esgophagus - and it is very painfull. For this I must have medicine daily - My medicine is called Losec,.and I have had no sideeffects from this - it works fine. Sometimes though when I am stressed or got a cold or something, the reflux worsen. then I drink Aloe Vera Juice - it dont take the reflux away, but it instantly takes the pain away and cools of the burning feeling. During the summer 2000 I became very weak and was in pain. It started with ear infections. Later I started to flip my eyes for at couple of seconds several times a day, and at the same time I became very tired and weak. I had a EEG made to find out whether it was Petit mal seziures - but the EEG did not show anything. Later the explanation was that I had much pain and tried to "escape" by doing this. Later I was admitted to the hospital for tests to find out what was wrong. They found out that I had reflux more than 88% of the time - no wonder I had pain and was not thriving. Reflux Surgery and Mic-Key Button In January 2001 I had my Nissen surgery done, and at the same time they placed a button in my stomache. This button can help me when I produce a lot of gas in my stomache, which is normal after this kind of surgery. The button can also be used to get food, water and medication in. I had at long and hard recovery from the surgery, as I first was admitted to the hospital 14 days after the surgery, and I didi not feel well at all when I got home. During the next 3 - 4 months I was admitted to the hospital several times caused by pneumonia. Added to thad I also managed to get at stomache virus and rubella. In August 2001 I was luckily well enough to go on with my normal life and start in kindergarten again. Colds I easily get colds. So I am not much outside during the wintertime or if it rains - I hope i become stronger when I get older and bigger. I can not have too much clothes on, as I sweat alot. Even in winther I do not wear more than one blouse - if i get more clothes on, they will get wet by my sweatting. Hospital Since birth I have been admitted to the hospital several times due to infections, pneumonia and other things, but luckily I have always recovered quickly every time. |
MUSICTHERAPY I have no language yet, but babbels con- stantly. My parents thought that I would benefit from taking Musictherapy clas- ses so I might learn more about expressing myself at this early stage of my life. I simply love musictherapy - I sing, play with instruments, look at my teacher Char- lotte alot - (and I usually are not espe- cially keen on having eyecontact) - it is a fun and very good way of playing and learning at the same time. Here is a link to my Musictherapists homepage |
MY PHOTOALBUM |
MEDICAL STUFF |
DAILY ROUTINE |
MUSIC THERAPY |
Daily routine. I spend my days in kindergarden - that is a kindergarden with normal kids, and there is a section with 8 children with speci- al needs. It works fine with normal and special children to- gether - and when we (special) children need more time by our- selves, the door between the "normal" kin- dergarden and the special needs section can be closed. I have fysiotherapy two times a week in the kindergarten. My fysiotherapist dis- tributes a bucket to bath in, so I can sit by my self - not a thing I can normally do - It is a thing I really enjoy. If you would like to see how it works, please look in my photoalbum or visit the fysio- thereopists homepage - just click here . I am a very happy and joyful girl, and my parents knew that another child would fast outgrow me both fysically as mental. So they decided to have another baby before I became too much aware of it. So on Decem- ber the 31st 1999 my big littlesister Jennifer was born - so much different from me as can be. She was (and still is) big, nearly bald, have hands and very demanding - but funny - I will not have eyecontact with her, but when she smears food all over her I have to laugh - but when mom or dad takes her up instead of me - BOY can I get mad!!! - but normally I dont take much notice of my sister - she is just there - just as our cat. The past ½ year Jeanette has more contact to her little sister - she loves to tease her, and laughs when Jennifer dances and performs for her. Many things has happened in Jeanettes life since this homepage was made. January 2001 she had a Nissen surgery done, which we are convinced that saved her life at that point. At the same time she got a Mic-key feeding button in her stomach - we can realley recommed this - now she could get food and medicine even when she was too ill or tired to eat by herself. October 2002 she started having reflux again, but that could be handeled with medication (losec and gaviscon and Aloe Vera juice). November 2002 she started to sit up herself, and loved it. February 2003 she "walked" sitting on her behind - it goes VERY FAST!! During the past couple of years Jeanette has been seeing a chiropractor several times a month. She had tension in her neck, shoulder and lower back when she moves in many strange and for us impossible ways. We are convinced, that the visits to the chiropractor has had a very positive effect on Jeanette - she should not use energy to feel pain and discomfort, so she used her energy to be a part of our world in stead of living in her own tiny "universe". She became joyful, playful, naughty and when she was well she laughed and teased us - she loved it. Unfortunally she had surgery for volvolus (malrotation of the bowel) in october 2003, which made her very sick. At the same time her reflux got worse and she became self injurus, mostly on her hips, which dislocated several times. She should have had surgery for this, but we decided to wait untill her second reflux-surgery had been done - she had the surgery in march 2004. Unfortunally she was too damaged inside, so she did not survive the surgery. Added to her severe refluxproblem, the surgen told us that her scartissue were so overproduced that most of her entrails were growing together. A thing that happens sometimes, we were told. We were also told that the scartissue most likely was the reason for her volvolus in october. We were told, that if she had survived the surgery, then it would NOT have been possible to make any form of surgery on her again - ever. If you are a parent to a child with Cdls and are facing any of these challenges with surgery of any kind or anything else, we would be glad to help you with our support and advise. Please feel free to contact us - our e-mail is levisen@stofanet.dk Thanks, |
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