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Newly Diagnosed   Message List  
Reply | Forward Message #245 of 525 |
Re: Newly Diagnosed

--- In cerebral_palsy_support@yahoogroups.com, "rex_mom"
<ebrody@...> wrote:
>HI.My daughter was born at 26 weeks, she had a lot of things to
over come she had a stage 3 brain bleed , a pda ligation on her
heart, hydrosfolic. subgaleal shunt, and we were told she would
never funtion normally.At 13 months we were told she had cp.we were
in total shock.BUT!!!! by the grace of God she is doing great NO
mental retardition. she is a little behind but is doing well she can
crawl and walk around everything holding on, we hope she will walk
soon.What Im get around to is The Drs told us the same thing, gloom
and doom!! and look were she is now at 20 months .They can say
anything but the truth is that they just DON't know how things will
turn out.Honey we love these kids no matter what and we all as
parents will do what ever we have to to help these gifts from
God.Have Faith and don't give up and find time each day for a
breather even a very short one it will help you cope with
everything.Rember your little one will be the best she can be what
ever that is for her or him. Take care and know you are not alone.
> Hi,
> We got hit with the dagnosis of Hypotonia Cerebral Palsy today for
our
> 14 month old, Rex. It's the first we heard this was a possibility
even
> though we knew he had low tone. He's been in Early Intervention
> services since he was 3 months. Have any others children been
> diagnosed this early? What tests were run first? Does anyone know
> how we can determine how severe it will be for him and when we'll
know
> this? Do any others have retardation as well, the doctor mentioned
> this as a possibility? Anything you can share would be
appreciated.
> I am scared of the unknown, and that is all there is right now for
me,
> too many questions and not any answers. The doctor was vague
except
> to paint a doom and gloom picture. He told us Rex would be
dependant
> for life and most likely retarded too. I'm going to get a second
> opinion, so anything you can tell me will help when I meet with the
> new doctor. What should I look for? What should I ask the
doctor?
> Are there any tests I need to have done? He's had an MRI and EEG,
> both normal. Thanks for your input.
> Elizabeth
>








Thu Jun 15, 2006 3:21 am

temp_mom
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Forward
Message #245 of 525 |
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Hi, We got hit with the dagnosis of Hypotonia Cerebral Palsy today for our 14 month old, Rex. It's the first we heard this was a possibility even though we...
rex_mom
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May 26, 2006
8:18 am

... Hi, We got hit with the dagnosis of Hypotonia Cerebral Palsy today for our 14 month old, Rex. It's the first we heard this was a possibility even though we...
alj2519@...
jla6668
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May 26, 2006
10:16 am

Thank you. I will look into TEFRA medicaid. We luckily have excellent insurance and have already reached our out of pocket annual deductable. How is your...
Elizabeth Brody
rex_mom
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May 26, 2006
6:25 pm

Hi, The diagnosis is always difficult. Our son was diagnosed at six months of age and realistically we knew even before then. My son also has mental...
Laura MacGregor
lmac1016
Online Now Send Email
May 26, 2006
11:10 am

Hi My son is 20 months and was diagnosed with CP and has more recently developed seizures. It's hartd to handle sometimes. I am also currently 36 weeks...
Cynthia Sanitago
georgencin
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May 26, 2006
1:48 pm

Hi, My son also has seizures (both while awake and while asleep) and I agree it can be very overwhelming dealing with it all. My only advise right now would be...
Laura MacGregor
lmac1016
Online Now Send Email
May 26, 2006
5:38 pm

Hi Elizabeth- My name is also Elizabeth! My 2yr old son Geoffrey was diagnosed with cp after an MRI at 11months old. He had high tone and was a preemie so we...
elizabeth hockenberry
momelizamom
Offline Send Email
May 26, 2006
7:46 pm

... Thank you. I will look into TEFRA medicaid. We luckily have excellent insurance and have already reached our out of pocket annual deductable. How is your...
alj2519@...
jla6668
Offline Send Email
May 26, 2006
8:12 pm

Rex is my only and he is a miracle. We lost four before he was born. He is showing signs of Autism as well. I'm scared too, but am being strong for him and...
Elizabeth Brody
rex_mom
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May 26, 2006
10:35 pm

We were trying to have another but the news from Wed. has kind of made us re-think it. It is so much to learn and take in. I try to be the strong one but...
alj2519@...
jla6668
Offline Send Email
May 26, 2006
11:26 pm

I am an occupational therapy assistant and I work in settings where I treat kiddos with CP and autism. Most however are school aged. I know that the majority...
nikki clark
chasersmith
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May 27, 2006
12:44 am
alj2519@...
jla6668
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May 27, 2006
1:57 pm

You are so welcome. Keep in mind that you can always post questions, I may not always know the answers, but I have resources. You seem to be doing a great...
nikki clark
chasersmith
Offline Send Email
May 29, 2006
4:05 am

... over come she had a stage 3 brain bleed , a pda ligation on her heart, hydrosfolic. subgaleal shunt, and we were told she would never funtion normally.At...
temp_mom
Offline Send Email
Jun 15, 2006
3:22 am

Thank you for the words of encouragement, it means a lot. I have an update about our son Rex. He has been well for a couple weeks now and is starting to army...
Elizabeth Brody
rex_mom
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Jun 15, 2006
4:28 am

... hope.Does REx sissor with his legs? Moriah does and tipie toes so when we get the feet flat she will be off.I"l keep praying, And remember speek positives...
temp_mom
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Jun 19, 2006
5:10 am

Hi, No he doesn't scissor his legs or stand on his tip toes. He puts most of his weight on his heels actually. I started taking him to a message therapist...
Elizabeth Brody
rex_mom
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Jun 19, 2006
8:46 am

Hi Elizabeth how you doing this fine HOT morning?Moriah is doing wellhad to have new AFO's because she grew out of her's in less than 3 months.She has pt and...
temp_mom
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Jun 26, 2006
2:25 pm

Hi, We are hanging in. Our live in nanny was shaking Rex and we caught it on tape last week. We called the Sheriff, who is not going to press criminal...
Elizabeth Brody
rex_mom
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Jun 28, 2006
2:00 am

--It has been a horrible week!!!!! Moriah almost died. she was eating and screamed a blood curdleing scream jerked back her head and went unresponive. we...
temp_mom
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Jul 6, 2006
9:09 am

I am so sorry for what you have been through. I guess we both feel the impact of others lack of caring for our children. I am relieved to hear Moriah is...
Elizabeth Brody
rex_mom
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Jul 6, 2006
5:34 pm

I was reading you e mail about your little one and it breaks my heart my name is amanda and I am 20 years old and I have cp if you ever need anything or have...
amanda martin
im_the_one_f...
Offline Send Email
Jul 8, 2006
3:43 pm

... Thank you for your email. Everything is going well no more seizures.And Moriah is doing real well.she is on a real strong med tegretol. the side effects...
temp_mom
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Jul 13, 2006
6:42 pm

Elizabeth I posted pics of Moriah if you would like to see my miricle baby--- In cerebral_palsy_support@yahoogroups.com, Elizabeth ... caught ... press ... the...
temp_mom
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Jul 6, 2006
10:02 am

I just had to chime in regarding the potty training issue. My 6 year old does not have cp or any other diagnosis and he still wears a pull-up at night. It...
nikki clark
chasersmith
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Jul 6, 2006
10:52 pm
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