Children with CP

Chelsea - posted on 02/02/2010 ( 69 moms have responded )

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If anyone has a child with CP and needs someone to talk to I would be more than glad to talk to you. My son Jayden has CP and is almost 2 still not walking. He goes to physical therapy twice a week and speech therapy once a week. Please if any one needs to talk, I need to talk too!

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Lacey - posted on 03/11/2010

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Let me first say that ALL of the women, and you, that have posted are amazing moms! My daughter is 6 and has CP. We had complications during birth that resulted in her CP. She has blown the minds of all of her doctors, therapists, and the lawyer we had. She is doing so well now that we had to drop our case against the hospital!!! Can you beleive that! AMAZING! However, she still has many problems. Emma, my daughter, still drools excessively, her legs cramp REALLY bad at night if she dosent take a nap during the day, her fine motor skills need lots of help, she started school this year and now we are dealing with her peers. The other kids have noticed that she dosent move like they do and have said a few mean things to her. She is now aware of her disability when she wasnt before really. She falls a lot too when shes tired. We are waiting until 1st grade to decide if we will home school her. Right now its a half day and she sleeps for 3 hrs after she gets home. We can only imagine what a full day will do to her.
She is doing sooo much better than the doctors told us. They said that she would have severe brain damage and probably die. She is hear and she is beautifull! She went to therapy 4 days a week for 3 hrs a day before kindergarten. Her therapy was in a preschool setting with kids whos disabilties matched hers. Since she started kindergarten, its dropped to 30 min a week. Not enough, not even close. We have noticed her progress starting to receed. We will have a meeting with the school and get private therapy for her also.
I would LOVE to talk more with you. It's really nice to be able to talk to another supermom who understands what I am going through.

Nikki - posted on 03/01/2010

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I too have a son who is going to be ten in a few weeks who has CP. He didn't learn to walk till he was a little over three. He signed for the longest time but talks now just with a studder. I have have learned to take it one day at a time and just enjoy the good moments.

Diane - posted on 03/01/2010

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Hang in there Chelsea. My son has CP also, however he is now 21. It has been a long but, very worth it road. I also remember going to PT, OT, going to the many different specialists. If you have any questions or just want to talk, I'll be here.

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My son, Donovan was born 3 months premature at 2lbs 10ozs. He was diagnosed with CP before he left the NICU at 9weeks old. He also hs hydronephrosis(kidney abnormality). Donovan started therapy through EI at about 3 1/2mths old with OT, PT and I also learned massage therapy from them
He is now 3 1/2yrs old. It's amazing how children can overcome so many obstacles, and live with the rest. He is cognitively wonderful but has very high tone in his legs. When he was a baby he also had very high tone in his arms and was NEVER able to hold his bottle. His arm tone has extremely improved so that he can hold his sippy cup and help feed himself etc. When he turned 3 he started 2.5hour preschool which half the children have disabilities(mostly behind in language) and the other half are "model" students. His OT and PT is now during this school time. It's nice that they learn from each other, with Donovan talking well and he is able to pick up on their movement strengths.

Donovan just got forearm crutches last week and is learning to use them. This is one huge achievement that I wasn't sure would happen. Karen--I too remember crying with joy and relief when my son first stood alone for a few seconds.(just a few months ago actually) It's one of those moments where u feel that the therapy, doctors appts, tests, etc are really worth it.

My son also has had botox shots. The first time he had them(about a year ago), his legs had very much less tone as soon as he woke up, and the ability to spread his legs apart have still stayed with us, and his "walking" improvements have stayed. Another happy, relief cry. Unfortunately the 2nd time of shots did nothing for him at all and his high tone is still here.

I also know the pain of watching other children do laps around my son as he crawls on the floor and ask what's wrong with him. The worst was when I had to put him in daycare for a time(since I do have to work full-time). He was about two and they put him in with the one year olds who ran around him while he sadly sat on the floor(having a tough time even staying in that position). The teachers were great and loved him but it was very tough.

Our current struggle is "potty-training" and what i think is panic attacks and obsessive compulsions. He can't balance himself on the toilet and is getting too big for the "potty". He also will become hysterical and inconsolable often about the smallest things such as a blanket being on the floor, anything on his hands, or sometimes nothing at all.

Dyann - posted on 02/28/2010

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My son is 25 years old, and has severe quadriplegic spastic cp. He was born 8 wks early and was diagnosed at 7 months. So many of these posts bring back memories! We've been there. Ryan had adductor releases done when he was 5, hamstring releases when he was 7, baclofen pump implanted when he was 14 and steel rods to correct his severe scoliosis when he was 17. He is nonverbal, for the most part, with a vocabulary of about 100 words, but doesn't really put words together. He also uses a Dynavox communication system. He had PT, OT and ST until he turned 21. A therapist told me when he was only 3-4 that his problem was not receptive, but expressive. He is an extremely bright, handsome young man and recently was able to buy his first home, after apartment living for 4 years. We are able to keep him on our private insurance and he also has Medicaid and Medicaid Waiver. If I had words of advice for any of you younger mothers it would be to take care of yourselves! You can't help your child if you don't take some time for yourselves. Even when Ryan was little, he went to a Mother's Day Out program at our church one morning a week. We then got him in preschool at church with the help of an early intervention program that was just being started way back then in our state (Arkansas). Also, the baclofen pump has helped with his spasticity, but I feel it would have been more beneficial at an earlier age. We also tried Botox, but without much success. I was still lifting, bathing, positioning him until he was 21 and weighed around 130 lbs. I knew I couldn't care for him forever (since I dropped him in the shower!), so when he was 19, we started putting plans in place for him to live with 24/7 staffing in his own apartment. He enjoys his "independence" and, since he lives only 15 minutes from us, we visit him often. We even had a housewarming party for him last Sunday and invited his former teachers, therapists, family, neighbors and other people that played a big part in his life. We wanted them to see how far he'd come and how they had helped him become the young man that he is today.

There is a light at the end of the tunnel . . . and remember, your child plays an important role in this world. You can't imagine the number of people that will be touched by your child, nor in the ways your child and you as a parent will inspire others.

If anyone needs to talk, I'd be happy to share!

Dyann

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Lesa - posted on 03/15/2010

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I posted this on another thread and wanted to share.. Hi there.. I am a Mom of 2 children with disabilities. The older boy was born with a gread 5 brain hemmorage (suppose to die at 3 days old). My family did a lot of praying and just kept on loving him everyday. We were told he would NEVER eat properly, walk, talk, toilet train, and would have seizure disorders. Well, I can tell you that he is talking, walking (with forearm crutches), eating, potty trained (of course) and never did have those seizures. In fact he is now 19 years old, going to college to be a phychologist and living on his own. Kids are AMAZING when the parents don't give up or take doctor's word and intirely fact. My youngest child is a different story. He was born very early. He had seizure disorder, will never walk, has to be tube fed, won't be toilet trained, talks some but uses a commucation device and is also in a wheelchair. We will be caring for him for the rest of his life. He is currently 18 yrs and will graduate from high school in May. He is still our little blessing. I have learned a great deal from my kids and experienced temp. disabilities for myself. With having shoulder, back, neck, gall bladder and female surgery. I guess what I trying to say is don't ever sell yourself or your children short, Keep trying and seek out friends/family for support and ideas. I sure will share things I have tried and my experiences over the years. I now have a 2 yr old grandson with a severe heart defect. He is already a miracle and wasn't suppose to live at birth. Keep up the great work and love them every day.

JessieRaye - posted on 03/15/2010

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My son didnt walk until 2 1/2. slow steady progress has been our motto since he was born. Both his legs are effected by his CP. He started out with a walker and graduated to just him. He has been a little unsteady and receives botox injections to help relax his left side. When the botox wears off he starts dragging or swinging his leg out. He can run pretty well it just looks like he has a pimp walk(that's what the family call it) because he is stronger on his right then left. He has come so far and we are proud of him.

Jenny - posted on 03/12/2010

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I have a daughter who was born full term who has spastic quad CP and PVL. She is 6 years old now and we are trying kindergarden this year. She can only go to school for 3 hours as she gets tired. She comes home and sleeps for 3 to 4 hours. Next year she will repeat kindergarden and maybe try a full day. She has come along way. She was first diagnosed as failure to thrive developmentally delayed. She was not meeting milestones at 4 months. We were told that she would catch up by the time she was three. At 18 months old she was diagnosed as having PVL and we were told that she may never walk or do anything. She was going to Early On and getting OT, PT and speech. At 3 we were told that she also had CP and that her PVL had affected every part of her brain so it was considered severe PVL. She has mild hearing loss in one ear, has had eye surgery to correct her double vision and no depth perception, has had many sets of tube in her ears, has low muscle tone upper body and tight lower, oral aversions, afo's so she can walk and sensory processing disorder. She is a very cute little girl who is surprising us at what she has accomplished. She went from what we called a limp noodle to a girl who is walking, riding a tricycle, going to kindergarden, feeding herself, and can sign and is also becoming more vocal. She is still has fine and gross motor delays and is developmentally at about a 2 year old level, but if she was any different that she would not be who she is. Some days are harder than others and some days are really great.

Jaimie - posted on 03/12/2010

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Hi Chelsea, my son Giancarlos has CP I know how difficult the journey is. You are not alone, my son started to walk May of 2009 at the age of 4, I thought I would never see the day, not to say there was no hope but sometimes hope seems unreachable. He is now six and has a 5 to sometimes 8 word vocabulary on a good day! He like ur son and the other moms whom have replied goes to therapy for OT, PT and ST. My son has been also diagnosed with Epilepsy, and has severe seizures.

He is such a joy, always wakes up in such a great mood, he never complains and always wants to just give love! Our kids are great!

You can visit about.com search special needs children there are excellent tools and links. There is also a child care notebook u can download super helpfull. I just found it and begun to complete it, helps to keep everything handy and in reach. You know we see so many specialist and doctors it gets hard to remember all the meds, all the doctors the appointments and so on.

I am here for you and anyonelse who needs to vent...Lord knows I need it just as bad as you do.

Till next time, good luck and lots of love
Jaimie

Nikida - posted on 03/11/2010

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Darrion has spastic Diplegia (extremely high tone) has had Botox injections in adductors and heel cords. Had a Dorsal Rhizotomy @ age 4 and Heel-Cord Lenghtening @ age 7 he can see, hear and speak and can use a walker..He wears AFO's and has a wheelchair for distances. He got his power-chair almost 2 years ago and it stays @ school he has a manual one for home & daycare. He has OT/PT/ had speech till school age, He has a Ortho and neuro specialist also has a full-time EA @ school and is 1 of the most optomistic and funny lil boys around.

Tami - posted on 03/11/2010

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Hi, I have a daughter with CP, and she is moderately retarded. She had a double hip osteotomy back in 1983, it was the first one done in the eastern US. She was in a cast for 3 months the first time, each month she had to have a new cast, and they got smaller each time. After she came home, she stress fractured her right hip, and had to be in a cast all over again for three months, again in a new spika each month. It was a nightmare keeping the cast clean, but the traction devises were the real headache. I was lucky enough to have the family business in our home, and could answer the phone and take care of her at the same time. When she fractured the same hip a third time, I thought I would go crazy, but everyone was so great, from the doc that did it (he was FANTASTIC to her school sending out a teacher to tutor her at home.

At the time we were told that she would need the operation so that she would be able to walk in the future, and that turned out to be true. She is 31 years old, and is still able to walk, she uses a walker sometimes, and does have a mall chair for when we go shopping. I have no doubt that the hip surgery is the reason she is walking at all.

Emma - posted on 03/05/2010

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Hi Chelsea my names Emma I have a 20 month old with possible cerebal palsy i was wondering could u tell me what where the first signs you noticed Jayden had cerebal palsy because my son is pulling himself up and walking holding on to stuff and crawling and sitting up he seems normal. Please get back to me I have no one else to talk to.

Diane - posted on 03/04/2010

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Taking one day at a time is always the best. We never know what tomorrow will bring so, to worry about it is futile. Enjoy today with your child.

Jennifer - posted on 03/03/2010

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Hi! I have 3 boys 6,5 and3 who all have CP. My 6 and3 yr old dont walk. They r both in school but only one of them gets physical therapy. My 5 yr old walks but he walks on his toes and falls alot. I know exactly how hard it is to take care of special needs kids. I have 3 of them. If u ever need to talk just drop me a line.

Liz - posted on 02/28/2010

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Thank you Dyann,
My son will be 16 in September, and I have SO many fears about his future. My parents help take care of him A LOT, and I fear the reality that they are not so young anymore. I didn't have the support of my ex-husband neither emotionally, physically, or financially, so it's been a long hard road for me. I feel I fight the system constantly, and don't get very far, ever. I live in New York, and was told that it's the hardest state to get assistance. Your message did give me some measure of hope, and I thank you for that.

Liz

Liz - posted on 02/28/2010

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My son is a lot older, but if you EVER need to talk, write to me. I will do anything I can to help you not make the same mistakes I did, and help with some of the right things that I did. DON'T let anyone talk you into a wheelchair until you can no longer lift him. My son was using a walking. Once he went to school, they INSISTED on a wheelchair. Since then, they never take him out of the chair, and he has had no desire to walk.

Liz

Lori - posted on 02/27/2010

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I know what your going through my daughter is now 9-- keep hope-My daughter learned to walk through physical therapy. I am curious have you ever had your Thyroid checked? and if you did what your TSH level was if it was over 3 you may need to be take something. I now think my untreated thyroid problem led to Olivia's CP and and low IQ.

JOHNELL - posted on 02/27/2010

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I have a son that has CP as well as being deaf and no speech. He is 50 years old and very bright and happy. Now he is having visual problems. He has retinal vein occlusion, and is receiving injections into the eyes for treatment. This is very much a concern, because his life revolves around his computer, books and video games. I just keep praying that God will not take his sight from him.

Sylvia - posted on 02/26/2010

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hi chelsea im a young single mother with a child with cp my son joseph is seventeen months old and has left side paralization. he walks but is always falling down he cant catch himself with his left so im afraud he'll brake it. he has physical therapy ocupational therapy and speech i know how you feel. we went to get an MRI on thursday butthey couldnt start an IV an blew up his viens in all his hands and feet. hes a tropper though he wiped my tears away after his did.

Bobbi - posted on 02/26/2010

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Hi.. my son is three. He also is not walking or talking. He babbles a lot and can say momma and diddy. Which is cute. Anytime you need to talk I'm here...He just got a g tube he can eat just not gaining enough weight. But we are having to work with it cause it makes him throw up where he didn't with his bottle pr eating his food...

Sara - posted on 02/25/2010

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Hi Chelsea! It sounds like our little kiddos are on similar grounds with their physical delays. My daughter, Katie, is 3 1/2 and has been walking with her walker (well) for about a year (since Nov. 08). She has braces for her feet/legs too. As far as your frustration for kids running circles I can totally relate! You really need to let yourself go through a grieving process and let go of what he SHOULD be able to do. I had a really hard time with this and wasn't able to hang out with several of my friends because their child was the same age as her. I think that's ok to take a break from same age friends for a time, but I've since hung out with them and expressed my difficulty I had in the past and told them it really wasn't them, but I needed to let go and not compare. They understood and are appreciative that I confided in them about it. We now have an 11 month old boy who has already surpassed Katie's physical capabilities. Katie doesn't seem to mind. She is one determined little girl and actually is driven by watching other kids do things that she is challenged by. As far as the stress...have patience. He will make strides in his OWN time. In another year, look back and see how far you've come.

As far as the therapies and doing it alone. I take Katie to all her therapies, although now that she's started preschool we have cut back a little, but I still take her to OT, ST, and PT once to every other week. Our clinic we chose will also do an occasional home visit and this has really helped my husband to feel a little more involved. Seeing how he can truly help her at home I think has helped him feel a part of what's going on. Since he works full time and I don't it makes sense for me to do it. He is able to see the therapist help her and explain things better than I can. I can't speak for your husband, but as Jayden's Dad, he has that innate unconditional love locked inside him. If he's not able to make it to therapy or says he doesn't want to, perhaps you can talk with him and find out how you can help him feel more involved. It may be that he's trying to deal with these stresses in his own way, and not realizing that's he's not supportive. Perhaps you two could debrief after therapy (over dinner or after kids are in bed) and he could help with therapy at home? Just a suggestion.

Melisa - posted on 02/24/2010

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Hi to all of you! I just read through all of your posts and I can't believe how similar our stories are. I feel like I've finally found a thread that I can fit in to.

My wonderful daughter, Megan, will be 5 on March 9th. Although we still don't have an "official" diagnosis beyond severe global developmental delay, she receives support and treatments the same as children with CP. She was born at 30 weeks, is non-verbal and has high-muscle tone especially in her legs. She has had two rounds of Botox with the next planned for this summer. She eats very little orally and is fed by G-tube. She wears AFO's and we use a wheelchair to get her around outside the house. In the house, she can "bunny-hop" where-ever she wants to go, or we carry her. Megan is in a pre-school 5 days a week for children with Special Needs.

Megan is the light of my life. She is my only child and I can't imagine my life without her. She also has quite the personality that keeps me and my husband laughing and smiling.

My frustrations are never with Megan. But I get frustrated by many things, like how people react to her, or else they act like she isn't even there. I get frustrated by how in-accessible the world is to people in wheelchairs or with special needs. (I would give anything for a public bathroom that has a large enough change table for big kids or adults!)
I get frustrated by other people who try to diagnose Megan based on "someone they know who knew someone else that had such and such." And of couse, as some of you have already mentioned, I get frustrated by how much work Megan does and how much work all of us help her with only for her to make very slow, teeny-tiny gains. I feel liker her hard work should be rewarded with bigger gains. But she is fiesty and goes with the flow better than I do.

It feels so good to finally find a goup of ladies that can relate to and understand what my life is like. You are all remarkable Moms!

Melisa

Shannon - posted on 02/24/2010

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Chelsea,
I am so sorry about everything you are going through...I remember so much of the stress we had when Trevor was first born, I couldn't go back to work and my husband lost his job for 9 months and it was a mess! We were beg & borrowing everything we could, our parents were helping us the best they could, but eventually we had to declare bankruptcy. The thing that helped me so much was going to counseling, my husband and I both went. It just helped to talk to someone and cry about everything and know that it didn't leave that room. It is one thing to talk to family and friends, but I was always afraid they would think I was whining. Also, I would go to Children's and see other kids who were worse off than Trevor and then I would feel guilty for being frustrated. :( Just going to talk to someone helped A LOT! and I think because my husband went too, we really grew together and had better ways to handle what was happening.
I got really close with the Nurses in our NICU and they would tell me to be patient, that Trevor would do lots of wonderful things, just to give him time. I didn't believe them and felt like he would never walk or talk. He finally started walking at 22 months, very shakey and holding onto stuff, but walking. I even had him walk with a walker at therapy to help his legs get strong.
One piece of advice I wish I would have heeded as far as therapists, etc. was not to be so nicey nicey with them. I was really nice with a few of them and I think that Trevor missed out a little. It wasn't until our at home PT really pissed me off cause she made Trevor cry so bad that I just finally yelled at her and told her what I felt was important for his therapy. After that day, he got better care. Just something to think about :)
For birthday ideas, for Trevor's 2nd, we had a Thomas party at home and just had his cousins come over for pizza and cake and play with his toys. That was Trevor was really comfortable in his own space and really felt like he could participate.
Happy Almost Birthday to Jayden and take care!
~Shannon

Chelsea - posted on 02/24/2010

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hello
Thank you all for your posts!!! Ya'll have helped me so much! Jayden has been slowly making progress in pt but every bit counts. To all your little ones, good job and keep up the good work! Our kids are a blessing and truly a wonder!

The stress level is still on the upward battle. Everything seems to be coming at me one after another. I wish things would take a week vacation and then I will be good to go for another round. I feel like sometimes I am losing my mind and can't get out of the daze. The cars are breaking down, my dad is going into surgery again to get a metal plate in his head, therapy, work, chores at home, money and my husband being gone at work which seems like at the time. All this on top of what already has been going on the past 2 years. I wish I could know what to do for Jayden and get him where he needs to be and be able to run and play with other kids. He has the drive and the want to get up and do things but can't and that is so hard to see him have to put up with it. But he is always happy and does what he can. Nothing can prepare you for what will come with a child with special needs but that smile that he gives me makes everything worth wild. I love him so much and I never thought that I could love someone or something so much.

Jayden is about to be 2 in May, If anyone has Birthday Party ideas let me know!!

Thank you again and for all you support.
Chelsea

Shannon - posted on 02/22/2010

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Hi all you wonderful and miraculous Moms!
I am the Mom of an almost 6 yr old little boy with spastic hemiplegia CP on the left side, a VP shunt, hydrocephalous and seizure disorder. We were told at his birth that he wouldn't walk or talk, yet with perserverance and LOTS of therapy, he not only walks but runs and you definatly can't quiet him down.
Trevor (my son) does get botox injections regularly (every 6 months) and it does absolute WONDERS for him! It allows the therapists at school and in private therapy to manipulate his arm and leg so that he gets the most out of his therapy. His braces (2 for his arm and one on his leg) are fitted to maximize the effects of the botox. Also, as he grows, his bones grow faster than his muscles and he gets so tight, his arm is almost unusable and he starts to limp with his leg, so the botox helps to relax this and give him the mobility and ability he needs.
He goes to school 5 days a week full time, he is in Kindergarten this year in a special education class-he is the most physically challenged in the class and excels with all his work :) He is learning to read and can write his name. He is an absolute miracle and I really credit all the early intervention and therapy. He still has lots of challenges and the orthopedists are talking about wrist surgery when he is around 10 to try and help his hand and arm (it has been affected the worst). We worked and worked and continue to work with him on his speech....after pushing audiology for a BAER test, it was confirmed that he was very very hard of hearing...once he got his hearing aids, his speech really flourished. I would recommend if you haven't had the hearing tested, to do this.
For those of you Moms with younger kiddos with CP, just keep working...it is so hard and you feel sometimes that you are being so mean to push your child, but it is worth it in the end. Whether or not they will walk, they are so intelligent and sweet and deserve everything happy and positive this world has to offer. Trevor didn't walk till he was 2 and didn't talk till he was 3...hang in there...it will happen eventually!
If anyone wants to talk, I am here :)

Sam - posted on 02/22/2010

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hi chelsea im a mum of a little girl with cp, she had meningitis and sceptacaemia at 8 days of age and spent 7 weeks in hospital, she is 11 years old now, she had hip surgery when she was 23 months old and has also had numerous other surgeries, she is also blind has epilepsy and spastic quadraplegia she is wheelchair bound, i was told by her consultant that she would never beable to do anything but she holds her own head up, feeds herself with finger foods and a bottle, goes to school full time and can say a few words she has pt ot and st everyday at school and is such a pleasant little girl. never give up hope. if you need to talk dont hesitate to get in touch.

Jenny - posted on 02/22/2010

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Hi All

It's so moving reading all your messages. Just seeing people that one can relate. Share the same stresses, disappointments & challenges. My son was born at 30 weeks & has CP on the right side of his body. He is now 7 yrs old. Has all the same therapies - ST, PT & OT. He attends a special day centre Monday to Friday. Helps with the tutor that comes to our house twice a week that does 1 on 1 lessons with him.



He has low muscle tone - so he only sat at 2 and has been crawling since. He can pull himself up and making slow progress at walking.



It is tough seeing other children doing things automatically...with no intervention. Also accepting that effort doesn't equal success.



Something things that has really help me deal with accepting that...only special people are chosen to have special needs child. One of Muslim colleques shared with me one day that they viewed as a blessing as parents of special needs go straight to heaven. Encourage other children to mix with my son so they can appreciate that we're not all the same.



Much love to everyone...together we can do it!!!!

Jaime - posted on 02/22/2010

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Hi Everyone! It's so great to hear everyone stories and know that you are not alone. It is so hard being a parent to children with such special needs. I have 2 1/2 year old twin girls, Hannah and Ryley who were born at 24 weeks gestation. Both have a diagnosis of CP. However Hannah was given the diagnosis as a way of making sure she got services. Ryley has more issues physically. Both girls go to an early Intervention program three days a week where they recieve PT and speech and at home they recieve OT Vision therapy and More speech. Both girls have hearing loss but Hannah is more severe than Ryley...she now has a cochlear implant and is learning how to hear. Ryley's CP is definitely one of the hardest aspects of it all. Neither girls walks so it makes it very difficult to go anywhere with the girls. Right now she wears knee extenders during sleep and afo's during parts of the day. We have a stander which she spends a couple of hours in. She also takes baclofen and she will be recieving botox injections in her hamstrings in the next couple of months. She can sit on a bench with her afo on but can not sit for too long on the floor. She can belly crawl and climb over obstacles and she is starting to talk a lot. Feeding her has been very difficult. She still does mostly baby food but with some chunks and textures. Anyways thanks to everyone for sharing your stories. It's so hard not to feel so alone and sad on a day to day basis.

Charmaine - posted on 02/21/2010

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Hi to you all. I am from Malta and have a 3 and a half year old girl named nicole. She was also diagnosed with severe quadreplegia cerabral palsy. She was a twin but during the pregnancy at five months i lost the other baby and it seems it made damage to Nicole. Nicole has a high tone and is not able to sit alone . Balance is still 0. She does not walk or sit alone nor feed nor talk.Apart from this shereally brights every room she is in with her smile. Her willingness to do things is there but unfortunately her body does not allow her. The difficulty that i find here in malta is that to buy special equipment we have to buy them blind folded. There is nowhere we can try them. Is there anyone who is doing special exercises for the balance and saw some kind of improvement.? Nice talking to you all.

Hazuki - posted on 02/21/2010

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My son Jesse is going to be 16 in May. He has CP with fluctuating muscle tones. He only sits by himself for about 1 min. He does not talk (but makes sounds). He is the joy of my life. He is a happy boy. He has had therapy since he was 6 months old. People always ask me how I do it and I tell them I have 3 step daughters (21, 19 and 15) and a daughter who is 9 months and my son is the easiest out of all of them. He is happy with the simple things in life, he doesn't talk back or get mad. I wouldn't trade him for the world.

Kate - posted on 02/21/2010

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Hi to all the other wonderful Mommies
My son has right heamaplegic CP that effects his right side with a mixture of spasticity and weakness, so frustrating. We were one of the fortunate ones as he started walking when he was 18 months with the aid of peadro shoes and lots of physiotherapy.
All you can do is your best for your child, you cant compare as that will make you go mad and milestones are irrelavant. You can only try and do the best for your child and you know your child the best, never forget that. Anyway, he just had a baker's slide procedure done on his right calf(a tendon lengthening process)last week, so he will still be in cast for 4 weeks. But we await the results, and are trying not to hold our breath!
Good luck to everyone and remember to stay positive and congratulate yourselves on every little result, no matter how small theprogress. Progress is great and it all counts!Remember we are all they've got and they trust us to do the best for them and always be there. Good luck

Roxie - posted on 02/20/2010

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Hi everyone, I have read everyone's posts. Dawn I live in MS also. I was 33 weeks when I had my son due to a placental abruption. My son was in the First Steps program also. They wld come to my house and work with my son until he turned 3 and he was no longer in the program. My son will soon be fitted for some more braces on Monday. He uses a wheelchair. He is 5 years old and is pretty heavy. I make sure I bend my knees when picking him up. When I see other kids running around playing I tell him that one day he will be doing the same thing. For some reason I have never had a break down. @Karen my son also has quadriplegic spastic CP. I take my son to therapy and dr appts by myself because I dont like his dad going with us. You all may think im being mean but its more to the reason I dont take him with us. I know that one day my son will be able to walk and talk may take a lil time but i kno he will. I also belong to a support group in my town for families of special needs children. I enjoyed reading eveyone's posts seems we all have something in common. Take care eveyone and God Bless.

Chelsea - posted on 02/20/2010

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Hello again!
Sorry I haven't been on here in a few days. Other from the stress of therapy and work, my dad was in a bad freak accident and had brain surgery last year, ever since then he has had nothing but problems with his head and had to go to the emergency room a few nights ago. Ever since Jayden was born it seems like one bad thing after another has happen. He was early, my grandpa passed away, my dad was hurt, my sister passed away from cervical cancer and alot more. I am just thankful that Jayden is here and is doing as good as he is.

Thank you all for your support and posts!
till next time
Chelsea

Chalee - posted on 02/20/2010

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Hi my name is chalee and my daughter avry has cp. she also goes to ot and pt once a week as well as speech. she also has a trach and a feeding tube and shunt. but i tell you what i use to work in a day car and have those kids aren't as smart as she is. she signs and knows her colors as well as shapes. she will be 3 in june. if you every need to talk get ahold of me on face book if you can. it would be nice to have someone eles to talk to

Dawn - posted on 02/18/2010

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Chelsea - Sorry I mised alot of these posts while we were in Shreveport for Stacey's surgery. The place where we get therapy closes for 2 weeks over the Christmas hoilidays so Stacey gets a break from therapy then and we usually take a vacation of some sort for a week in the summer and he gets a break then. I try not to let him miss therapy, because every session helps a little. It was much more difficult when I was working (even thought I worked from home and could work at midnight if needed) and trying to juggle all of his therapy. Unfortunately I got laid off in Sept 09. I am not able to find a job at this point with the flexibilty I need to have with Stacey. So we are trying to get by at this point. I guess things happen for a reason because there is no way I could work at this point with him in the spica cast.
talk to you soon.

Ginny - posted on 02/18/2010

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Hello our son Dale is 8 now and has C.P. also. He has quadraplesis, cortical visual impairment, Epilepsy, and is on an entral feed, but believe you that is not the Dale we know and love. Those are just the lables we have to use to get the services our guy needs. Dale is a funny, bright boy that loves to laugh, always has a smile, loves his walker and is a cheeky monkey. He is a brother, a friend, an uncle, a cousin and most of all one of our 3 greatest blessings, better known as our youngest son.
We had to do the Physio, O.T., Speech, swimming, A.F.O.s and now he has a Boston brace to help him sit up and keep his spine straight (he hates it!!!!) He has had surgery, hip braces, medication and shots, and still Dale smiles and is full of love for any one. [ Personally by now I would be less than enthusiastic to go to the doctor let alone therapy. lol!] I have to say the journey of motherhood has been a huge learning curve for me. I have had to ask for help, I have had to learn when to let go, I have had to learn to stand up and fight for change, I have had to learn that one persons mountain is another persons mole hill. But most of all I have had to learn that perfection isn't always what society deems perfect. Not every one is meant to play on the football team! Most of all I have come to believe very strongly that God NEVER says OOPs!
Some days are hard, some are long, some full of joy, some full of pain but the journey our children will take and take us on is amazing. I look forward to sharing our Journey with all of you.

[deleted account]

Just wanted to say that. You all are great moms and doing a great job!! It take a very special woman to take care of such great children like ours. Just thought you guys should know that !

[deleted account]

I have read alot of these post and it looks like alot of the kids here where diagnosed late like my son . My son was diagnosed at about 1 years old . When he wasnt sitting , crawling or talking more like he should have been. Wish there was a better way of finding out earlier to get a better jump on things instead of waiting so long to find out .

Karen - posted on 02/17/2010

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I just have to share this with you all - my son managed to stand unaided for about 20 seconds today!!!!!!!! ;0)
He was leaning against the sofa (back to it) and then just leadned forward and stood there before falling to his knees and crawling off. The way he did it you'd thiink it was an everyday occurance! I must admit I cried! And best of all, my husband saw it too!

Chelsea - posted on 02/17/2010

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Melissa- That is awesome that he is talking and crawling and doing things they never thought possible! You are right about being able to get out your feelings and be able to talk to other moms that understand and can relate to what you are going thru. Talking to moms has really helped me! Thank you for your post!

[deleted account]

Hello Chelsea~
I have a 5 soon to be 6 year son with a mild form of CP. He has high muscle tone in his legs and in his left arm. He goes to PT , OT ,Speech, 30 mins everyday at school and one day a week at a regular office. Plus what we try and do at home with him . He can feed himself but it just takes him awhile . He will try and help get himself dress. He has learn to army crawl to get around the house but for other things we have to pick him up. But he trys so hard to do all the things other kids do. the drive is there but he has a hard time accomplishing it .
But thru it all he is the happiest boy you ever meet. He loves to joke and he such a flirt with the ladies. He has come along way . They said he may never talk but one day word started coming out. He may only say a few word and 2-3 letter phrases but they are the greats word youll ever hear when you have been waiting so long for him to say something .
Well if you ever wanna talk Im here and like to talk too. It great to get it out what your feeling or talk to another mom that has a child like yours or atleast similar .They understand the best of what is going on

Chelsea - posted on 02/17/2010

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Shaheen- If you ever need to talk, I am here and there are alot of other moms here to talk to also. We can be your support group.

How did the surgery go? Have you seen any improvment? I have an appointment for Jayden on March 9th for his eyes cause his eyes have been crossing really bad lately.

Once you get the equipment it will help out alot! At first it is hard to be comfortable with it but in time you and him will be use to it.

Hannelore, Trish, Nicci- Thank you for your posts and wanting to be there to talk to. If ya'll need to talk too, I am here for ya'll.

Till next time,
Chelsea

Shaheen - posted on 02/16/2010

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Hi Chelsea,
My son has also been diagnosed with CP. He is 19 months old. Not only does he not walk yet, he doesn't sit either. He is quite developmentally delayed. We are in the process of getting all the special equipment for him...a kid kart, AFO's, standing frame etc. He just had eye surgery for strabismus (cross eyes) and is likely going to be getting a feeding tube. My son also has increased tone. It's hard not knowing what the future will hold. It is very nice to have people to talk to though. I was attending a parent support group when I was on maternity leave, but now that I am back to work I am not able to attend the group anymore. I miss it a lot!

Hannelore - posted on 02/16/2010

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Hi Chelsea
I am here to listen to you if you want to talk. I am a mom of a 6 year old little girl that has CP, and can't walk talk of do anything for herself.. So if you need to chat please i am here to listen. I live in South Africa and had nobody that understood how is was to have a disabled child.. I must say i have been to hell and back, but i am back and a proud mom to a disabled child.

Chelsea - posted on 02/16/2010

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Thank you all for all of your posts!!

I cried when I read some of the stories cause I know what you are feeling and I didn't think any other moms felt the way I was feeling. The overwhelming stress, the emotional roller coaster, the therapy appointments, doctors appointments, having no one to turn to or talk to that really understands and like yall said see the day to day struggles that we and our children go thru.



Our children didn't wish for this but they think this is normal cause this is all they have ever known. To us moms this is new and we don't know how to grasp the thought of not being to help our child when they need us most. I thank God that my son is even here today. I wish I could fully understand what he feels and what goes thru his mind. I feel alone in my family cause no one in my family has had to deal with something like this. I love my husband but alot of times I feel like a single mother with a room mate that doesn't do anything. I too watch my son like a hawk making sure other kids don't push or pull him or run over him, make sure he isn't putting anything in his mouth. When kids ask what is wrong with him, or what happened to him, I just tell them his fine and that is how he moves around, (don't know who I am trying to convince me or them).



When starting this conversation I never thought I would get such a great response and positive feed back. Thank you moms for your support and chats! This has helped me so much and I wish to continue to sharing stories and thoughts with ya'll.



Till next time!,

Chelsea





Jayden hits his legs when they don't do what he wants them to do. He knows that something is different and gets mad.

Trish (Bullard) - posted on 02/14/2010

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Reading some of these post bring back many memories. My daughter was adopted as a newborn. She has cerebral palsy, in a wheelchair, non-verbal...amazing young lady as she is 17 now. She also had bilateral hip surgery and wore the spica cast 13 years ago. I'd gladly talk to anybody I can help or if you just need to vent.

Nicci - posted on 02/13/2010

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My daughter Abbey was born healthy but then contracted bacterial menegitis when she was three montsh old and has now just been diagnosed as having CP. We have spent many years with the title global developmental delay which was a very wishy washy way to say she couldn't do what other kids can. She is also blind and suffers from epilepsy all as a result of the meningitis. The idea of CP is a new thing to me so I'd definitely like to chat. Abbey will be 6 next month and has a twin sister Lucy who started school this year.

Ilene - posted on 02/13/2010

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As the mom of a grown son who has Cerebral Palsy, I am always available to talk to the younger moms. I may or may not be the voice of experience, but, I have "been there". Feel free to contact me with any questions.

Ilene - posted on 02/13/2010

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I am the mother of an adult who has Cerebral Palsy. Gregory had the surgery when he was three years old and also spent quite a while in the cast. Believe it or not, he got used to the cast (better than I did). I used to lean him up against the coffee table in the cast. It gave him the stability to stand and play with toys.

He had further surgery when he was ten which also required the spica cast. Somehow, I have erased a lot of this from my mind, but, I know we got through it with good results and I know you will too.

As an "older" mom with a grown child, you may get some insight from me. Please feel free to call on me if needed.

Melanie - posted on 02/13/2010

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I have a five year old with moderate CP hyptonia and ataxia. He wears a lycra garment to help give his muscles stability and make it easier for him to stand and walk, Piedro boots and he wears a helmet when he is in the playground at school to protect his head as he can't get out of the way quickly enough when other children riding bikes or scooters stray into his path! He chatters non stop although some of his speech is difficult to understand and never lets anything stand in the way of achieving what he wants in life. I know we are so blessed that he is able to do so much but sometimes I find I get so frustrated as other people really don't understand the stresses I feel caring for him everyday..they just see a little boy who is running around and don't see the day to day things I have to do such as watching him like a hawk as he has little sense of danger and you never know what he is going to climb on/ put in his mouth/ or when he is going to try and run out the front door and onto the road!! Awful as it sounds I sometimes find myself wishing he couldn't walk so I would always know where he is..and then I hate myself for feeling like that..sometimes I just want OUT!!

Meredith - posted on 02/13/2010

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Hello Chelsea,
My name is Meredith. My story is a little bit different. I'm a mother with CP; most people see me and think that I had a stroke becausse it is so mild. I'm only affected on the left side of my body. If you need to talk just e-mail me anytime....my e-mail is proudvamo1975@live.com.

Also my son (7-years ol) has high-functioning autisim and ADHD so I understand the frustration and concern that go along with dealing with a child that had certain needs.

E-mail me anytime....

Meredith

Candi - posted on 02/12/2010

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Hi chelsea, I have a son with CP he is 15 now and walks with Forarm crutches, he is a apremie and wasn't dignosed with CP till he was almost 3yr. He has extremely well communications skills that is why they wouldn't dignose him with CP. But, at 2 yrs he still wasn't able to sit or walk or stand, took him to a specialist in developental milestones and she dignosed him. Believe it or not when he was 3 his Orthopedics docotor reccommneded Botox treatment, which were 12 injections in his legs, his abducts, hamstrings and heal cords, and after the injection he was able to walk without the crutches not far but was able to moblize better, the botox would last about 6 months. We did a total of 3 injections and then they quit working but the did loosen up his legs he still has therapy but not as often. We have had alot to deal with and we still do. I am happy to chat with you anythime you would like on here or my email which is barnhartcandi@zoominternet.net feel free to email me anytime with any questions hope I can help

Katrina - posted on 02/12/2010

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Hi Chelsea. My son Bryce is at significant risk for developing CP due to brain bleeds at birth as well as steroid use in the NICU. He is 8 months old now, 4 months corrected, and shows some minor signs but nothing too telling yet. If you're interested I'd love to pick your brain about CP. If not and you just want to talk to another CP mom I completely understand.

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