CP Diagnosis

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
jacobkaden
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Re : CP Diagnosis

Postby jacobkaden » Tue Feb 25, 638600 5:26 pm

Thanks Kara, I tried this, but she did not enter her contact information so the e-mail prompt does not come up?

kara
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Re : CP Diagnosis

Postby kara » Mon Feb 24, 638600 7:40 pm

Kim,

Click on her member name and the click on "Click to send an E-Mail". It will open a little box where you can type a message. She will see your email address on file and can reply back to you at that address and then you'll have her email address.


jacobkaden
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Re : CP Diagnosis

Postby jacobkaden » Mon Feb 24, 638600 6:08 pm

Hi Sara -would love to e-mail you privately - but there is no e-mail on your profile? Please e-mail me.

davishayman
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Re : CP Diagnosis

Postby davishayman » Fri Jan 10, 638600 1:26 pm

Kim,
Our son, Davis was born at 27 weeks due to HELLP syndrome on 10-15-97. He weighed 2 lbs, 1 oz. At 2 weeks he developed sepsis and lost down to 1 lbs, 10 oz.

At 23 months, he was diagnosed with CP. We knew in our hearts that something was wrong, but the diagnosis just threw me for a loop. I will never forget that day or that phone call.

We have learned several things over the years...

1. Doctors will not tell you specific things that your child will or will not be able to do. I think that part of this is because we really don't know what a young brain and body is capable of doing.

2. Early intervention and constant therapy is VERY important.

3. Good doctors and great therapists are key to allowing your kids to achieve everything that he is capable of.

4. Teach yourself. About everything. You are your child's #1 advocate and therapist.

5. Celebrate the small things.

By the way, 9 years after diagnosis, Davis is still improving and still doing new things.

Feel free to contact me.

Sara


molly419
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Re : CP Diagnosis

Postby molly419 » Fri Oct 30, 638314 3:19 pm

Kim,

Abigail was never "officially" diagnosis with CP, but two specialists pretty much told us that based on her major delays in gross motor skills, that she had mild CP. We decided not to have the scan done, because her current care would not be changed by the outcome. I understand your feelings.

The day that I was told for the second time that Abigail had CP, I was numb. I grieved for Abigail and for a "normal" child that was lost that day. After everything that we had gone through, to hear that she has CP was very hard on me. I was angry at both myself, my body, PE and God. For a long time, I did not think that life was fair and why did we deserve this. Let yourself be angry, don't hold it in. Let yourself go through a grieving process of a dream that was lost. It is so normal to feel cheated.

As Jenn said, we are given special children for a reason. There will be many tough days, but the rewards are always so much sweeter! Jacob has a great mommy and I promise you, this journey will become easier.

crystalw
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Re : CP Diagnosis

Postby crystalw » Fri Oct 30, 638314 2:42 pm

Kim,

(((BIGHUGS))) I am so sorry. I wanted to give you this link because I think it is amazing and I hope it makes you feel better. I am not going to tell you it could be worse or its not that bad because no mother wants to hear ANY diagnosis that is disabling to a child. All we want for our children is to go to life as smoothly and as healthy as possible! What I will tell you is that you are in my prayers and my heart aches for you. I hope that this story can be of some inspiration to you! :)

http://www.paulsmithfoundation.org/main_biography.html

summerw77
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Re : CP Diagnosis

Postby summerw77 » Mon Oct 19, 638314 1:59 am

Hugs sweetie. I am so sorry. I know you will find the strength to get Jacob through this.

I would find a support group like pre-e board, for CP. I bet after you talk to other moms, you will find out it's not as bad as you think.

Keeping you in our thoughts.

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hannahsmom
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Re : CP Diagnosis

Postby hannahsmom » Wed Oct 07, 638314 8:20 pm

Oh, Kim....

I'm sorry that you received some upsetting news about your precious little boy. But, he has accomplished so many things so far...I know that he will accomplish many more wonderful things. A diagnosis is just that...a diagnosis. But it does not define who your little boy is. You know that we have been dealing with Hannah's diagnosis of epilepsy, and I was just beside myself. Like you, I was relieved to have found the answer and diagnosis, but it was very upsetting to think about what the future might hold. You and so many others were supportive and helped me through the tough first days of her diagnosis. I have met so many other parents with children with her same condition, and I have felt so much better. I hope and pray that you will be able to talk with other families of children with CP. I know that we have a few PE parents with children with CP, and I have two very good friends with children who have CP, and those children have amazed me. Little Jacob will amaze you too. Prayers and cyber-hugs are coming your way.

jonandkatsmom
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Re : CP Diagnosis

Postby jonandkatsmom » Mon Oct 05, 638314 9:10 am

Hi,
I have no experience with CP, but my son has apraxia. I remember the weeks I spent agonizing that I knew something was wrong, but didn't know what. Then came the diagnosis. I understand the fight within you... I was happy that we knew what was wrong and devastated that something was really wrong.
It seemed like forever before I could look at my son and see him, not his diagnosis. My husband was never able to recover. He just couldn't face having a child with a disability.
My support system that existed (my husband and my family) weren't much help. They were as lost and devastated as I was. I had to reach out and find other parents who had been in the same place. Through a website that put me in touch with other parents with apraxic children and a speech therapist who was truly a godsend I found support and hope.
I feel as if I have spent and continue to spend my time fighting for my son... fighting for him to be understood by others and to get him what he needs. The more educated I became about his diagnosis the more I felt able to fight for what he needed. I became more confident in the face of others who didn't understand.
Having a child with a disability is hard, but it is not the end. I look at it as a new beginning. One that looks different from the one I imagined, but not worse, just different. When I look into his eyes I still see my little boy... my angel.. and though it may take more work than it would for other children, or he may progress more slowly... he's there... the person he is shines through everything else.
Find people who have walked this path. They are invaluable. Keep reaching out, and know that you are not alone.
Bridget

cindync
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Re : CP Diagnosis

Postby cindync » Thu Jul 18, 638312 5:27 pm

Here is a blog that you might find very inspirational:

http://www.micropreemietwins.blogspot.com/

She also has lots of links to other blogs.


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