Update on the god-daughter

  • Posted by a hidden member.
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    Jan 20, 2009 6:42 PM GMT
    Ok, so several of you know that I take care of my god-daughter pretty much all the time. A few of you have even helped when I have had questions before. She has been sick for a while... really bad cold. Hard to keep her fever down. We went to the ER the other night, fever was 102.5. When we got to the hospital is was 103.3. They gave her a double dose of motrin/tylenol. Her fever went down, thank God. The doctor was examining her, and starting asking questions that weren't even related to why we were there. Anyways, turns out that she is showing a lot of signs of Cerebeal Paulsy. Doctor has us watching her very closely, as they cannot do a brain scan yet because she is only 6 months old. There is no cure for Cerebeal Paulsy. But there is therapy excercizes that help. So for now it's a watching game. Again. To see if more symptoms develope. So keep us in your thoughts. I know that I will never be given anything I can't handle. So if this disease is meant to be, she is still my beautiful god-daughter that I will love, hold, and play with no matter what. I just hope we get the clear bill of health..
  • Posted by a hidden member.
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    Jan 20, 2009 6:47 PM GMT
    I am sorry to hear about your god-daughter lilmann. I hope everything turns out for the best. She is very lucky to have you in her life.
  • Posted by a hidden member.
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    Jan 20, 2009 7:59 PM GMT
    Best wishes to you.
  • Posted by a hidden member.
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    Jan 20, 2009 7:59 PM GMT
    Thanks man, I appreciate it!
  • Posted by a hidden member.
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    Jan 20, 2009 8:01 PM GMT
    wow. Serious respect to you. Living in the same house as my nephew for 4 days is enough for me.

    You're a good guy. icon_biggrin.gif
  • Thirdbeach

    Posts: 1364

    Jan 20, 2009 8:02 PM GMT
    I hope that she will be okay.

    BTW:
    What is the Cerebral Palsy fundraising charity in your area?
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    Jan 20, 2009 8:03 PM GMT
    I too hope it turns out to be nothing. Cerebral palsy does not usually impair cognitive abilities though and whatever disability she may have it will most probably be purely physical. All the best and whatever happens she is indeed lucky to have you in her life.
  • Posted by a hidden member.
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    Jan 20, 2009 8:04 PM GMT
    It's rough, but I wouldn't trade it for anything in the world. Yea, my nephews are pretty rambunctious too!
  • Posted by a hidden member.
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    Jan 20, 2009 8:05 PM GMT
    Thirdbeach saidI hope that she will be okay.

    BTW:
    What is the Cerebral Palsy fundraising charity in your area?



    I'm not sure, but it's something I'm looking in to.
  • Posted by a hidden member.
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    Jan 20, 2009 8:11 PM GMT
    You know that I've always admired you and somewhat kept track of your personal sacrifices. From taking care of your niece to your goddaughter, it speaks volumes of your temperament. The world needs more of a parent like you. Your goddaughter's well-being is in my prayers, BIG lilmann. xx
  • byronicheros

    Posts: 211

    Jan 20, 2009 8:15 PM GMT
    *prayers*
  • Posted by a hidden member.
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    Jan 20, 2009 8:16 PM GMT
    You and your god-daughter are in my thoughts and prayers. You have a great attitude and are right...you won't be given anything you can't handle so do your best. In the meantime I'm praying for a quick and full recovery for her and strength and energy for you both.
  • RSportsguy

    Posts: 1925

    Jan 21, 2009 12:03 AM GMT
    Lilmann, it is awesome how you are taking care of your god-daughter! She is very lucky to have you in her life! I hope that she just as a cold. Stay strong!
  • Posted by a hidden member.
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    Jan 21, 2009 12:08 AM GMT
    Best of wishes, lilmann. No matter what ailment she's facing, it sounds like she's well-loved.
  • Posted by a hidden member.
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    Jan 21, 2009 12:15 AM GMT
    Hang in there lilmann, it WILL get better and she will too!!! Just keep lovin' her man!!!!
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    Jan 21, 2009 12:15 AM GMT


    I'd say bless you, but you already are. What a wonderful and lucky little girl.

    You're both in our thoughts, Mr Daddy!

    -Doug (n Bill) of meninlove
  • Posted by a hidden member.
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    Jan 21, 2009 5:18 AM GMT
    Sorry to hear that lilman, hang in there!
  • Posted by a hidden member.
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    Jan 21, 2009 9:58 AM GMT
    Thanks guys.. really means a lot. She is feeling a little bit better today. Keep on sending positive thoughts! icon_smile.gif


    I mean it, I really do appreciate it yall. Things are rough right now in my life, and this was just topping it off. If it wasn't for her and my nephews, I'd have been long gone away from this place. Keep us in your prayers, and I'll always keep you in mind. Best of luck.
  • Posted by a hidden member.
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    Jan 21, 2009 3:04 PM GMT

    You and your god-daughter are in my thoughts. There are few things harder than looking after an ill child, The anxiety and the sense of powerlessness can be huge, not to mention the loss of sleep, financial implications, etc, etc. Strength comes in many forms and you are showing the kind that comes from the heart.

    My son, who is now eleven-years old was born with autism, life threatening asthma and a seizure disorder. There are two pieces of advice I can give you:

    1) Look after yourself

    You can not be of use to anyone else if you neglect yourself. You can do it for a short time, but over the long haul you need to be in good shape yourself. Call on whoever you can to give you an occasional break to get some sleep, have a break or just be you. Eat well. Sleep when you can. And find at least on person, family, friend, therapist, clergy that you can unload on.

    2) Become the child's advocate

    Learn everything you can about cerebral palsy, its diagnosis, implications, treatment options, etc. Find online forums for it, etc. Don't be afraid to ask questions and to seek second opinions. Never shrink from following your gut: if you think the child is sick or in need of help - even if you're not sure - do not hesitate to call the doctor, go to the ER, etc. I think in 11 years we've had one false alarm and at least half a dozen averted crises because of this.

    I was very, very lucky to be able to assemble a team of people around my son who have achieved remarkable results. Now a child we were told would probably never be able to run, speak properly or be able to succeed in school is an exceptional tennis player, loves playing touch football, rides horses, thrives in school and is turning into a very capable dog trainer! It takes the work of half a dozen people to keep him in school, but he's doing great. We are very fortunate to live in a place with exceptionally capable public schools, but I realize also that because the school and my son's doctors, therapists etc know that his mother and I watch our son's progress like hawks, stay on top of medical developments, etc, speak up when we have concerns and gush thanks and praise on his team when they get things right, our son he is getting everything they can offer.

    I wish you and your god daughter all the best. Please feel free to email me any time.

    Peace.
  • healthseeker

    Posts: 161

    Jan 21, 2009 3:16 PM GMT
    All my best to you and your god-daughter. She is lucky to have you.
  • Posted by a hidden member.
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    Jan 23, 2009 10:34 PM GMT
    Thanks guys. We took her to her doctor's appointment this morning, and things are still the same. I'm still looking for a support group for these types of things in my area, but haven't found anything yet. Guess I should just google it. I asked the doc, but he didn't know either. Good news: her cold is finally gone, so no more fevers. icon_smile.gif
  • Posted by a hidden member.
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    Jan 23, 2009 10:44 PM GMT
    Zack

    My son is having some tests over this weekend and I got a chance to mention to his neurologist your god-daughter. He recommended the following website for information and to as a lead to support groups, etc:

    http://www.ucp.org/index.cfm

    I'm glad that your god daughter's fever is gone and that she's feeling better. She is very lucky to have you looking after her. Be well.
  • Posted by a hidden member.
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    Jan 23, 2009 10:51 PM GMT
    you're the awesomest lilmann!!

    shame ur so far away...I'd offer to babysit. My son's 7 and he loves it when we babysit friends kids...he pretends he's got a brother/sister, and does everything for them

    little nut...
  • NickoftheNort...

    Posts: 1416

    Jan 23, 2009 11:22 PM GMT
    For her sake, I hope she does not have cerebral palsy.

    That said, cerebral palsy has many degrees of severity. My brother, for example, has partial paralysis in the right side of his body, resulting in a right arm with minimal function (he hasn't trained it though, so it hasn't received much of a chance) and reduced function in his right leg (he can walk, but tends to drag his right foot somewhat).

    Even with more severe palsy, her options in life can still be pretty open. While it may not be a parent's or god-parent's anticipated dream, one example is Jesper Odelberg, a Swedish singer and comedian who's confined to a wheelchair due to palsy (example performance found in this forum thread: http://www.realjock.com/gayforums/392722/