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Name: lisa
[ Original Post ]
is ther any parents who want to talk about their kids cp
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Name: sara | Date: Feb 12th, 2006 11:45 PM
My son is almost 3yrs. He has CP. He is doing well at this point with some therapy. 

Name: sara | Date: Feb 12th, 2006 11:50 PM
I have always wanted to start a foundation of some kind that would assist families in getting thoes developmental toys and equiptment that are often considered "luxury items". It there is an org. out there that provides assistance with this I'd love to know. 

Name: leslie | Date: Feb 14th, 2006 12:56 AM
I would love information if you get any also. My son is two and half. Where do you find shoes to fit a brace? and is there financial help out there?

My email is herefwhile2002@aol.com
Would love to talk to you since our children are around the same age and talk about being scared for their future and the stuff we think about and wonder about. Just everyday things
Thanks
Leslie 

Name: penny | Date: Feb 15th, 2006 7:23 PM
hi 

Name: cass | Date: Apr 10th, 2006 8:52 AM
headon5@hotmail.com if you need. I have 25 week preemies that are 5. If you need totalk. 

Name: kye | Date: Apr 19th, 2006 1:51 PM
hello,
how are you doing there,please mail me back i will help you out so let me know exactly what you need.mail:kye_mya@yahoo.com.i will be expecting you mail.

cheers 


Name: michelle R | Date: Apr 28th, 2006 11:24 AM
I love the idea about starting a foundation to help parents and children get what they need. Where i live it took until my daughter was5yrs old just to get her a wheelchair. Than it took 2yrs to get her a bath chair. Things are so hard to get and so exspensive.I just wish people would listen to the parents of special need children we know what they need we take care of them 

Name: mandy-australia | Date: May 6th, 2006 1:00 AM
hi all,where i live we have an organisation called NOVITA, that helps out with a toy library,special equipment ect. They even your home to check how your child is doing and what issues/extra needs that you have. 

Name: mandy-australia | Date: May 6th, 2006 1:01 AM
hi all,where i live we have an organisation called NOVITA, that helps out with a toy library,special equipment ect. They even your home to check how your child is doing and what issues/extra needs that you have.anyone can email me: cerebal2@bigpond.com 

Name: Jenny | Date: May 7th, 2006 3:53 PM
I am new to this My ddaughter is 13 months old and was just diagnosed with mild cp in febuary. i would love to talk to someone crzychic18@yahoo.com 

Name: mevelt83 | Date: Jul 11th, 2006 5:11 PM
My son has mild CP. I will talk to you. Melissa 

Name: elena | Date: Jul 12th, 2006 2:16 AM
Hi my name is Elena we live San Diego Ca, I never thougt in a millon years that i would have a child with any disorder, but becauce i do i wouldn't trade it for the world. I have a 2 year old daughter with CP. Who I love everyday of my life. The excitementt I get from her every day goal is unbeliveable. She is a totally 2 year old. My husband and I would love to meet someone who can relate to us. 

Name: elena | Date: Jul 12th, 2006 2:32 AM
Hi i have a 2 year old with cp 

Name: Emma_Calvesbert | Date: Jul 21st, 2006 5:26 AM
hi lisa im emma my son is nearly one and has cp we'bve been told he'll neva walk or tak=lk he is also profundly deaf and has severe brain damge liver diesese hydrocelphcus vp shunt in place for this, im in very a very lonely place at the moment as my son was a 26 weeker and weve been so busy jus fightin to keep him alive that now he's doin well evn though his cp has kicked in its hit me wot ive been throguh n i very so low hope to hear from you soon x 

Name: someonesmami01 | Date: Jul 21st, 2006 9:58 PM
My dauther is 3 1/2 and has severe CP, Epilepsy, GERD, Spastic Quadriplegia, CVI, Developmental Delay and is non verbal and non ambulatory. I was full term and we were expecting a healthy baby. We encountered fetal distress and no one did anything!!! My girl has battled pneumonia which almost took her away from me and is facing hip surgery next month. She has struggled with her weight and has had a painful teething process as she takes nothing by mouth so her teeth are not breaking through (no sucking). She is continually twitching and siezing which either scares or hurts her. I am so thankful that she is fighting to be here and I am ever greatful for that. I just wish she knew who I was. I wish I could hear her laugh. Anyone else cry themselves to sleep wondering how cute they would look trying to walk across the room?? What their little voice might sound like? I am terrified to lose her. I feel robbed by the doc that did this. Betrayed that he didn't protect her better. Please email me to chat... someonesmami01@yahoo.com 

Name: kristidswanson | Date: Jul 30th, 2006 7:52 PM
Hi Elena, my daughter is 6 and has spastic CP. She was born early and had a brain bleed that caused her to have seizures and later was diagnosed with CP. She is the light of my life. I am thankful for every day I have with her. I enjoy and celebrate every success that she has. I also have a 13 month old with no delays and I love her just as much!. But i do have a special bond with Emily. my husband and I have been through so much with her and we feel that we are lucky to have her. I have never for one day felt like "why me", I just feel like "why her" sometimes. I wish that she could do all of the physical things that other kids her age do. Oh well, she enjoys her life so it is ok! 

Name: lindalu | Date: Jul 31st, 2006 10:48 AM
Hay ladies, I have been reading some of the threads in this forum...I have noticed many of you have young children with CP. A fair amount of you are told that your child will never talk or walk. Well that also depends on the cevarity of the dammage. Some children seem far wors when they are infants than they really are. As an infant it is diffult for a doc to be able to propperly asses the axtent of the dammage. So it is possible that the doc may not be 100% accurate in his evaluation. Please ladies always reach just a litte further... you never know how it will turn out! 

Name: Krissy | Date: Aug 8th, 2006 10:47 AM
Hello! I have an 8 almost 9 year old son (his birthday is tomorrow) with cp. I was just looking for some people to talk to. 

Name: Krissy | Date: Aug 8th, 2006 12:08 PM
Hello! My name is Kristin. I've been looking for people to talk to about my son with cp. He also has siezures. He's going to be 9 tomorrow. 

Name: lindalu | Date: Aug 8th, 2006 12:14 PM
Kristin, tell your so I wish him a happy birthday! 

Name: Krissy | Date: Aug 8th, 2006 5:16 PM
Thank you! I will! Do you have a child with cp? Does anyone know of any other chat rooms I could go to to talk to people? 

Name: Christophersmom | Date: Aug 9th, 2006 9:23 PM
My son has CP is now 1 year old. He also has hydrocephalus. We got a surprise at Easter that he was going to be a big brother. I share this because we are wanting to do a cord blood transfusion to give my son a chance at crawling and walking. Has anyone done this??? Or has documented success on this?? Let me know at seventhschneweis@cox.net. Thanks 

Name: lindalu | Date: Aug 9th, 2006 10:27 PM
No my daughter dosnt have cp but for the first 8 years of her life I thought she did. At abot 7 months she was diagnosed as having cp, when she was 8 years the docs told me she didnt have cp ,she had a spinal cord injury. So I do know what it is like to have a child with cp, even if it was for only 8 years. 

Name: jitan | Date: Aug 15th, 2006 4:51 AM
I am father of a cp child.He suffered birth injuries due to doctors fault.But as i am from a devoloping country we r not that much abide to this type of law which get us some compension.But the expenditure for this treatment is more.so can anybody guide me to a voluntary organisation for help my child and others . 

Name: jitan | Date: Aug 15th, 2006 5:04 AM
my id jitrmfeo_2006@yahoo.com 

Name: MICHELLE | Date: Aug 23rd, 2006 3:11 PM
HELLO MY NAME IS MICHELLE AND I HAVE A SON WITH CP AND HE IS NOW 6 YRS. AND HE JUST GOT HIS WHEELCHAIR AT 3 1/2 AND HE ALS HAS A WALKER HE DOES NOT TALK LIKE THAT. I WOULD LIKE TO KNOW IS THERE A PLACE OR AN ORG. THAT COULD HELP ME WITH A FEW THINGS I WANT TO OPEN A DAY CARE THAT IS JUST ABOUT KIDS/MOMS THAT NEED A BRAKE IN THE DAY WITH CP FOR THE MOMS WHO STAY AT HOME WITH THERE CHILDREN .WHO CANT ALL WAYS GET OUT THE HOUSE. IF THER IS ANY ONE GET BACK MY E-MAIL IS michellebrandw5@yahoo.com LETS TALK!!!!!!!! 

Name: MICHELLE | Date: Aug 23rd, 2006 3:15 PM
HELLEO KRISSY MY NAME IS MICHELLE TELL YOUR SON HAPPY B-LATED BIRTHDAY!!!!!! 

Name: MICHELLE | Date: Aug 23rd, 2006 3:31 PM
TO ALL PARENTS WITH CHILDERN WITH CP I FOUND OUT THAT THE REGINAL CENTER WILL HEALP YOU OUT ALOT ONE DIAPERS , THEARPY, SPEECH ETC.....AND AS FAR AS SHOES I FOUND THAT IF I TAKE THE BRACE WITH ME THEN I CAN FIND THE RIGHT SHOE. BUT FANS ARE THE BEST SHOES FOR BRACES BECAUSE ITS WIDE ENOUGH AT THE TOP OF THE SHOEAND ALSO THEY CONE IN ALL STYLES NOW THATS THE GOOD THING. 

Name: Candice | Date: Aug 26th, 2006 7:27 PM
My name is Candice and I am a mother of a almost 3 year old son with cerebral palsy. Me and my husband are general middle class and obviously they won't approve us with SSI for my sons medical bills. I had recently been mentioned something about a Medicaide Waiver that doesn't go by your income but the severity of the child disability. If there is anyone who could any way inform me further on how to obtain more information on this subject I would greatly appreciate it. My email is cancortay@yahoo.com Thanks 

Name: pamom2crew | Date: Aug 29th, 2006 9:22 AM
I am a mom to 7 kids, with a variety of special needs. My 2 year old has cerebral palsy. She is going to be getting hip surgery soon as well as cord lengthening in her inner thighs, heels, and calves.
I also have an almost 4 year old with autism-pdd, adhd.
And a couple others with health issues, adhd, odd, etc..
If anyone needs, wants o talk feel free to e-mail me.
pamom2crew@yahoo.com
Amber 

Name: lindalu | Date: Aug 30th, 2006 12:52 AM
Candice there is a medical insurance provided by the state of MA called Common Health. It is provided for disabled children and disabled working adults. You do have a premium but the amount you pay depends on your income. My husband and I had the same problem where my daughter no longer qualified for ssi because of our income. We where frantic! we had no idea how we would pay for our daughter's medical bills. When we herd about this program we where extatic, it paid for every thing we needed. You should be able to get more info by contacting your local medicaid/ masshealth department. I will look for my paper work, I may still have the phone number for that department. 

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