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Name: sullykidsmom
[ Original Post ]
Our son is 19 months old and has CP. We go to therapy 4 times per week. We are starting to experiencce more and more challenges related to his diagnosis and realllllllllyyyy need some more parents that might be able to relate.
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Name: superian | Date: Feb 22nd, 2007 7:11 PM
Hey our 26 month old son has cp we have therapy pt, ot, teacher, and starting soon with speech. We have 4 other boys and I guess I have been a living with a dream that our other boys would help make our special boy close to whole as he could be. But the older he gets the more I can see that I have to be more proactive in my thinking and my approach to things. But I am unsure where to start. Maybe we can figure it out together. Contact me at [email protected]
thanks 

Name: anjelsin | Date: Feb 25th, 2007 12:51 AM
Hi my daughter hasn't been diagnososed with CP yet but her neurologist says that she will have it but to what degree is unknown yet, She is almost 8 months and has severe PVL. So far we have OT and PT once a week. It would be nice to talk to someone who relates because family has no clue. I have no friends any longer well I do but no one understands at all. So no one really talks to me any longer. 

Name: RachelL | Date: Feb 26th, 2007 7:01 PM
Im 24 years old and my daughter is now 4 with CP. She was born with the cord around her neck, followed by seizures. I was so excited to learn i was pregnant. Then to find out my daughter is not everything that i could have dreamed up. I was very traumatized by this. But at the same time God gave her to me for a reason, and she needs me. I have done so many things to help her. But with CP you can only do so much, its all on how she interacts with the PT and things. It seems as if i go in circles. I do all this PT and nothing seems to change. The PT told me that is all part of the CP and how the brain is adjustin to the strecthing. If you want to talk, my email is [email protected]. I need a friend as well. 

Name: etta lenn | Date: Mar 6th, 2007 9:06 PM
hi I have an 8 year old daughter with CP and epilepsey you can contact me at [email protected] you are not alone dear 

Name: trina | Date: Mar 10th, 2007 12:50 PM
I have 2 children with special needs. my 6 year old has cp and my 16mths old has been diagnosed with having global develpmental delay. When I had my 6 year old it was very scary as the doctors told me that she had stopped growing at 29 weeks, for 2 weeks they monitored me with having ultrasounds, eventually I had her at 31weeks, i was very happy to have her at that time because my doc said prior to having her that if i didn't have her then she would of ended up dead, i panic that much my blood pressure shot up, i ended up having hypertension, pre-eclampsia you name it i had it, all through stress, being violently assaulted by her father, which basically means that this is the way she is today. At first i couldn't adapt to it all as i was in complete shock, thinking the worse that my baby wasn't going to be able to walk, talk, or do anything, and than the worse happened, she was diagnosed with cp severley. I feel for any mum/dad family member who has to go through this and am there for any advice needed as well as looking. I am a single mum with 5 beautiful girls. 

Name: jpeakin4 | Date: Mar 14th, 2007 3:55 AM
i can realte. my son is 2 and has cp 


Name: jpeakin4 | Date: Mar 14th, 2007 3:56 AM
if anyone can chat with me please. my email address is jpeakin4@yahoo. 

Name: jpeakin4 | Date: Mar 14th, 2007 4:01 AM
sullykidsmom i will talk to you 

Name: midgie | Date: May 27th, 2007 6:57 AM
My son has multiple diagnoses. His primary diagnosis is CP. He will be 14 years old in two months. He is legally blind, eats with a G-tube, and is a spastic quadriplegic (he does have a couple of other diagnoses, but those will do for now). Yet, I tell everyone that he is happy. I have developed a saying I tell people, “Men just think women are in this world to serve them, my son knows they are”. It took me along time to cope with my son’s disabilities, but I came to realize that if I was to be of any real benefit for my son, I had to come to grips with what I had to work with and find ways to work with his disabilities. Grieving for what could have been for my son didn’t make things better for him. My coming to realize that he was a human being with limited abilities did. I began to work with my son on his level. My son had sensitivity problems his first few years, but after awhile he responded well to touching, hugging, and knowing that I, or someone was near him to care for him. It takes awhile for the parent to adjust, but with patience and love, you will begin to see that your child is still a child that will respond in ways you will recognize. My son can’t communicate at all. He can’t speak, he is legally blind, and he does not have enough control over his body movements to learn sign language. He is also developmentally delayed. There is know doubt in my mind that he knows who I am (he turns in my direction). Sometimes noises confuse him and I need to rub my face against his and give him his special ear kiss before he realizes it’s me. 

Name: Camhei | Date: Jun 7th, 2007 10:13 PM
I have a 21 month old daughter that was diag. w/ cp at about 1 yr. She is one of five children. boy do I understand the challenges and needing someone to talk to. I don't know anyone with a child with cp. There are days I'm not sure we are doing all we can for her or am I missing some kind of treatment that is out there. You can contact me at [email protected] 

Name: amanda | Date: Jul 9th, 2007 8:03 AM
I have a 13 yr old son with CP. He had a grade four bleed at birth. (The good thing was when we were discharged from NICU he wasn't posturing which is indicative of bleed babies. Age 2 we were diagnosed with CP. Held him back a year in pre school. OT, PT, Speech in home care until Elementary school. Kindergarten, Shriners Hosp broke tib/fib in left leg and rotated 20 degrees. Cognitive program in school (much to share on that subject). Last year in fifth grade working on about a second grade math and reading level. This year just completed 6th grade passed the state 6th grade math test. Still delays in reading but making progress. Shows cattle in 4-H. Rides horses. Very involved in Leadership at his school. Plays golf, placed fourth in state for Special Olympics.

We really have weathered a lot through trial and error mostly :):)

It would have been nice to have a forum such as this when he was younger. It's nice to bounce things off of each other as your deciding school placements, therapy that works and doesn't, braces vs rotating of bones, the long plateaus that occur between the next major milestone (walking, colors, letters, writing, reading, math, skipping, riding a bike, did I mention reading :) ) Our son gets terrible migraines and it has only been recently that he has been able to feel them coming on and medicate himself. When he was younger he would just start throwing up for hours and we hadn't a clue what was going on. His Neurologist was puzzled. It has been wonderful as he's gotten older and can see the patterns himself and be able to assist in the treatment. My son is a beautiful child who articulates himself very well. He very social. To look at him you wouldn't have a clue he has a diagnosis of CP.

If I can be of any help or support to others I would be happy to let you know some of the things we have tried, experienced or are currently working through. :):)

The biggest piece of advice I can share is to not accept the diagnosis or the treatment as an end all. We have found many alternatives when the doctors said the only treatment was..... For example, botox. Actually, a trampoline works incredibly well to get them to balance on both legs (throw all their walkers on the trampoline (at first ) until they're finally able to stand then they can learn to bounce. It really works wonders for improving balance and extension of those muscles. Didn't need the botox. :):) During their growth spurts those muscles tighten again. Horse back riding (english not western) works wonders. They have to post off those lower legs (in english) and that gives those muscles extension. Therefore helping to avoid surgery to cut ligaments, etc. Of course, not all this will work for everyone. But, it is nice to have other suggestions as to what to try before you have to do the more aggressive forms of treatment. As I said, we had to break a leg and rotate it and it worked beautifully he has a perfect gait. But, there were other things we were able to avoid :):)

I have rambled on quite long enough :):) This (CP) has just been a big part of our life. We have an older son who is 16 (and in the honors program) and a two year old little girl (we adopted). My email is [email protected] If I can be of any help or just offer a kind ear please write :) 

Name: Julia | Date: Jul 13th, 2007 1:08 PM
Hi, I am mum to Sophie who was born 16 weeks prem and has cerebral palsy. She is now 9. I also have 2 other younger daughters. If you want to email me for chat about cp and therapies, u can at [email protected] 

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