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Kristen

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  • Doug Standing/Britta de Leyer
    Thankyou everyone for your replies, it is nice to know we are not alone. I ll try to answer everyone s questions in this one letter so I hope I don t miss
    Message 1 of 3 , Jan 6, 2003
      Thankyou everyone for your replies, it is nice to know we are not alone. I'll try to answer everyone's questions in this one letter so I hope I don't miss anything. Kristen is receiving OT and PT on a fairly regular basis but no way 3 times a week like Christian, that's not available here unless we want to pay for it. In Canada all of our medical care is paid by the government (but there are definite limits) but I am happy with what Kristen gets. We are currently in a program where we meet on a weekly basis with a group of 5 kids and their parents with similiar concerns. They all see OT, PT, speech, social work, psychologist. Our kids all see the same physical med dr. who specializes in CP and he has Kristen on the baclofen and another girl on botox. He didn't even suggest botox for Kristen but the baclofen has been very positive for her. She really cut back on the arching and relaxed. I kind of assumed he is the expert and knows what would be the best so I didn't even ask him about botox.
      Shannon, it's eerie to read that Jacob is so much like Kristen. Her birthday is Oct. 29/00, she was supposed to be born Jan.5. Remember the respite is supposed to be for you to get a break, make sure you use it for that. Kristen screamed her head off when she first got a worker but now they are best buddies. Kristen just cuddles up with her and is very happy. Respite was the best thing for me as I was way too tired all the time and just not having any time with my son or husband. The gov't also pays for Kristen to go to a host home for overnights who is also my respite worker so I have no worries at all when she goes.
      Sorry, I am rambling on, I'll try to limit myself next time.

      Britta, mom to Kristen, 26 months with CP, CVI, seizure disorder and g-tube fed


      [Non-text portions of this message have been removed]
    • Loi Acosta
      Hello everyone! I m not exactly new to the group. I have written a couple of months back. Anyway, I ll just introduce myself again. I m Loi and I m the mom of
      Message 2 of 3 , Jan 6, 2003
        Hello everyone!

        I'm not exactly new to the group. I have written a couple of months back. Anyway, I'll just introduce myself again. I'm Loi and I'm the mom of a 3-yr old baby girl with CP. I have made a website for her because I'm hoping somebody can help us with information on how to get the best treatments for my baby. The site is http://www.geocities.com/lucille_viktoria. I hope you'll all take time to visit and do sign the guestbook. You may forward the site to anyone who might be able to help. You'll see in her photos that she's a very happy and bright kid. I guess it's sad she was born in a 3rd world country where the medical treatment for special kids is limited.

        My daughter doesn't receive any drug to manage her CP. She arches her back a lot and I haven't found a wheelchair suitable for her. We use a baby stroller and I put a lot of pillows where she could rest her arms (she likes to thrust her body forward but can't quite control it). Her neuro said we only need to visit him every 6 months and the last time we visited him, I wasn't satisfied with the consultation (and he's from the best children's hospital here in the Philippines!). I have been reading all your emails and I greatly feel that my child is not getting what she needs. My husband and I work full time and a nanny takes care of Lucille whole day Monday-Friday. Because I'm not sure if the nanny can do a bit of OT herself, I hired an OT to visit Lucille for 2 hours EVERYDAY.

        In the Philippines, we cannot afford NOT to work. Especially now that my child needs special care, we need a whole lot of money to afford the therapies. The government doesn't give any form of support for children with CP, none that I know of, but believe me I tried looking. I have only found a free therapy clinic but it's 2 hours away from our home and it's only 3x a week (you have to set an appoitnment with them because the waiting list is long).

        Lucille was diagnosed with CP when she was a year old. She was born 3 months early and after that I started reading about the effects of preterm birth, one of which is CP. Later I noticed the symptoms on Lucille - she never reached for her toys, never attempted to turn over or crawl, etc - and asked her former pedia for confirmation if it was CP. He laughed at me and told me everything was normal and that I read too much stuff it was making me "too nervous". We changed her pedia after that and confirmed her CP a month after.

        I'm worried if we continue to stay here in the country, my daughter will never be able to achieve her full potential. As of now she attemps to crawl and has turned over a couple of times. But I believe that with more advanced treatments (in the US or Canada or Australia), she could do more. Can anybody give me names of clinics or social institutions who can help us? Or any idea at all on how we can get help for my baby?

        All your emails about your children's stories, improvements and all the treatments they receive made me feel we're being shortchanged here in Manila.

        I'm sorry if my letter is too long. I'm not able to write to the group much because I'm only using our office computer during breaks (I don't have a computer at home). I hope somebody can help.

        Thank you and I hope you all have a happy new year! Kisses to all your sweet angels!

        Loi

        Mom of baby girl Lucille, 3 years old, CP







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      • Loi Acosta
        Hello again! Sorry my daughter s site is http://www.geocities.com/lucille_viktoria Loi Loi Acosta wrote: Hello everyone! I m not exactly
        Message 3 of 3 , Jan 6, 2003
          Hello again!
          Sorry my daughter's site is http://www.geocities.com/lucille_viktoria
          Loi

          Loi Acosta <loi_acosta@...> wrote:
          Hello everyone!

          I'm not exactly new to the group. I have written a couple of months back. Anyway, I'll just introduce myself again. I'm Loi and I'm the mom of a 3-yr old baby girl with CP. I have made a website for her because I'm hoping somebody can help us with information on how to get the best treatments for my baby. The site is http://www.geocities.com/lucille_viktoria. I hope you'll all take time to visit and do sign the guestbook. You may forward the site to anyone who might be able to help. You'll see in her photos that she's a very happy and bright kid. I guess it's sad she was born in a 3rd world country where the medical treatment for special kids is limited.

          My daughter doesn't receive any drug to manage her CP. She arches her back a lot and I haven't found a wheelchair suitable for her. We use a baby stroller and I put a lot of pillows where she could rest her arms (she likes to thrust her body forward but can't quite control it). Her neuro said we only need to visit him every 6 months and the last time we visited him, I wasn't satisfied with the consultation (and he's from the best children's hospital here in the Philippines!). I have been reading all your emails and I greatly feel that my child is not getting what she needs. My husband and I work full time and a nanny takes care of Lucille whole day Monday-Friday. Because I'm not sure if the nanny can do a bit of OT herself, I hired an OT to visit Lucille for 2 hours EVERYDAY.

          In the Philippines, we cannot afford NOT to work. Especially now that my child needs special care, we need a whole lot of money to afford the therapies. The government doesn't give any form of support for children with CP, none that I know of, but believe me I tried looking. I have only found a free therapy clinic but it's 2 hours away from our home and it's only 3x a week (you have to set an appoitnment with them because the waiting list is long).

          Lucille was diagnosed with CP when she was a year old. She was born 3 months early and after that I started reading about the effects of preterm birth, one of which is CP. Later I noticed the symptoms on Lucille - she never reached for her toys, never attempted to turn over or crawl, etc - and asked her former pedia for confirmation if it was CP. He laughed at me and told me everything was normal and that I read too much stuff it was making me "too nervous". We changed her pedia after that and confirmed her CP a month after.

          I'm worried if we continue to stay here in the country, my daughter will never be able to achieve her full potential. As of now she attemps to crawl and has turned over a couple of times. But I believe that with more advanced treatments (in the US or Canada or Australia), she could do more. Can anybody give me names of clinics or social institutions who can help us? Or any idea at all on how we can get help for my baby?

          All your emails about your children's stories, improvements and all the treatments they receive made me feel we're being shortchanged here in Manila.

          I'm sorry if my letter is too long. I'm not able to write to the group much because I'm only using our office computer during breaks (I don't have a computer at home). I hope somebody can help.

          Thank you and I hope you all have a happy new year! Kisses to all your sweet angels!

          Loi

          Mom of baby girl Lucille, 3 years old, CP







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