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I guess I'm saddest about the life my little granddaughter will face. She is 12 months and has the abilities of a four month old, even though she receives therapy to help her move and eat. I am afraid for her future.
Posted in:
Surgery Quadriplegia Microcephaly Speech therapy Stroke Cerebral palsy
Please try not to lose hope. Even though your grandaughter may not be progressing as fast as you would like, there is still a really good chance that she will catch right up to most of her peers. One thing I have learned from being the mother of a little girl with CP, and being lucky enough to know many other kids with CP, is that they develop at their own pace, and you never know when a big jump in development is just around the corner. Just wondering do you know the cause of your granddaughter's CP?
I am going to 33 this year. I have CP. When I was diagnosed, there was not much hope for me. I could not do anything for myself. I am now in intense pt 3 times a weeks 3-4 hrs a day. Last year I could not hold my head up. Now I want to climb a rock wall. I hope to be walking by next year. I am not saying this is going to be your grandbaby, but dont sell her short love her for her gifts and the joy she brings you. enjoy her progess. I will keep your family in my prayers.
She got CP as a result of having an undiagnosed heart condition that became apparent when she was 8 days old. She got really sick really fast, and when the decision was made to take her to the hospital, over 9 hours had gone by. CP came about as a result of her weakened state, both when she was being transported 150 miles to the hospital when the transport team nearly lost her, and then when the surgery was nearly completed, her heart stopped again and the surgeon did CPR on her for 30 minutes until she started beating again. She was placed on an ECMO machine for 12 days and then eventually weaned off the vent and other monitors, but was in PICU for 7 weeks before she got to go home with a feeding tube. Today she's not progressing past the 4 month stage, even though she has OT and PT weekly. I know it sounds like I'm having a pity party for us here, but I've never been faced with a family member so young, with so many challenges. Instead of losing it, I want to remain optimistic, and I'm looking for the positive. Thanks for your replies.
I don't think you sound like your having a pity party. You just sound scared and sad, and you have every right to be. I think when you find out that a child has a disibilty you go through a greiving process. Especilly when the little one is faced with such a uncertian future. My little girls story is different, Katie had a stroke. We didn't know that there was anything wrong until she was 7 months old and not able to use her right hand and not reaching other milestones. Katie's stroke destroyed more than 1/2 the left side of her brain. At that time we were told that she would likely never progress past where she was at that time. It was devestating. She is doing much better now, but was left with CP and Microcephaly as a result. I know it's hard, it's okay to be sad. It took me a good year after her diagnosis to come to terms with our new normal and some days i still cry. I hope your granddaughter starts to have some big breakthroughs really soon. Until then, keep the faith.
Maddie also has Microcephaly, and a "significant" case of CP. I am sorry to hear about your Katie. How old is she, now? Is she mobile at all? Maddie's mama, my daughter Katie, works with Maddie daily and their challenge is to get Maddie to sit. Since she just turned one, we're passing a lot of the bad milestones/memories that we endured a year ago. Maddie is definately "there" but delayed, and there is so much to come to terms with. I am hoping to turn a corner though with the grieving process and find the joy in having her in our lives. Thank you again. Your words have been an inspiration.
Give Maddie a big kiss and hug for me!! God bless.
horse riding could help alot, it did for me. I was born with cerebral palsy and I had ALOT of therapy, I can walk and talk now and actually people can't even realize that I have CP.
you can email me at : dustiann@gmail.com
I just wanted to let you know. That I am 25 years old with Cerebral Palsy. I was diagnosed with Cerebral Palsy when I was 2 years old. Soon after that my parents and my grandparents took me to Shriners Hospital. Shriners helped me alot. They gave my parents the information to help me progress. They were also able to put me in therapy O.T. & P.T. therapy. Not sure if there is a Shriners in your area but if there is please contact them they will give you the information and resorces that you need. Keep inspiring your grand daughter and pushing her to thrive please don't give up there is hope for her I am living proof.
Thanks and God Bless
I'm happy to report that I'm starting to turn a corner here. I'm still coming to terms with the fact that my little Maddie may not have the life we all hoped for her, but I'm starting to take joy in the little things. I spent 4 1/2 days with her this past week, and she's a happy little girl, smiles a lot, loves being held but can be ok on her own, and has learned how to eat from a spoon! The PT work is coming along, but she has a ways to go before she can make her core stronger and learn to balance herself and sit up on her own. The OT is giving her rigid splints for her hands tomorrow. I have decided to focus on what she CAN do and not what she's not able to do.
Dear MaddiesNana,
The picture of my son was taken on his first birthday. At that time he was not rolling over, wouldn't sit (he could but not for long and only when HE wanted to). He didn't crawl, was no where near pulling up...I could go on and on. Jacob had to be delivered when I was only 26 weeks along because his identical twin, Samuel, was not doing well inutero. We lost Samuel when he was only 2 days old and Jacob suffered a pretty serious bleed shortly after. You can read our story on our page...it is a long one! Shortly after Jacob's first birthday he started to roll over. A while later he started to comando crawl (he has a weakened right side due to his brain bleed and he may never do hands and knees crawling). He does PT twice a week and OT once a week. His abilty to walk was comprimised due to his bleed but his therapists believe he will walk some day and could even have a normal gait. It is hard to believe (but I have always kept the faith that he would walk someday) when I watch him at therapy but babies' brains can repair themselves so by having Jacob walk on a treadmill (half his body weight is supported by a harness and his therapist and I move his feet along) he is making new pathways in his brain that will someday help him to walk on his own.
After we lost Samuel I was afraid to love Jacob, fearing that I would lose him too. But I fell in love quickly and after finding out about his bleed I knew I would do anything for him. He is surprising everyone by how much he can do and by what he has accomplished. When Jacob was your granddaughters age he wasn't doing much...I felt like he was stuck. But slowing it came and we still have a long way to go but I know someday he will be right where he should be.
I know exactly how you feel. But you are a wonderful support for your daughter and granddaughter. It is so hard to watch an innocent little one struggle and know that their life will be different than most children their age but she will bring you amazing joy and you will be so proud of everything she does. I was happy to read that you are turning a corner. I still have days were I fall apart over the loss of my sweet Samuel and the unknown for Jacob but I am so thankful that he is here with me because I could have lost them both. I wish you all the best...your granddaughter is lucky to have such a concerned grandmother!
Elise
Hi. My daughter was born prematurely at 26 weeks (5 months gestation) due to an abruption in the placenta. She was diagnosed with mild Cerebral Palsy Spastic Quadriplegia at the age of 6 months and it's been a whirlwhind of doctors, therapists and a lot of hard work since then. In terms of milestones, she is reaching them in her own time and is doing quite well.
The keys to success here are to meet your children where they are physically and developmentally, embracing their strengths and doing whatever you can to help them to compensate in their areas of difficulty.
My daughter wears DAFO's and uses a wheelchair at school for mobility. At home, she crawls and climbs to get around and is encouraged to be as independent as she can. Although she is feeding herself and plays independently, she requires moderate assistance in all areas due to her lack of safety awareness.
In terms of speech, she began babbling and saying a few words last year and then all of a sudden lost all of her words. At that point, I purchased a speech therapy program and began working with her at home while collaborating with her teacher and the school speech therapist to teach her alternative methods of communication. Surprisingly, one year later she has an age appropriate vocabulary and can form 3-word sentences. At 4 years old she may not be able to tell you how old she is or where she lives, but she can sing "Wheels On the Bus" and "Twinkle Twinkle Little Star" like nobody's business. Everyone is shocked and elated that this non-verbal child is now communicating her wants and needs and expressing her exuberant personality. They call it a miracle-I call it hard work and perseverance.
In our world, my daughter is a NORMAL child with special needs. We make accomodations for her disability and encourage her to live her life without limits. She is not bogged down with unrealistic expectations and every new achievement, large or small, is a cause for major celebration.
Last week she graduated from preschool and I was so proud of her. The teacher said that my daughter's progress has renewed her vision of what children with disabilities can do. She went on to say that my daughter set the bar in her classroom and in fact inspired the other children to follow in her footsteps. What an awesome compliment for someone so deserving. In the beginning, I sent her to special education preschool so that she could model and learn from the other children. In turn, she showed me that she can be a leader as well.
Love your children for who they are and appreciate what they can do today. Achieving any level of independence is hard work and expecting a child with CP to do anything in a certain time frame is unrealistic and stressful for the parent when the child does not reach these goals. For me, it doesn't matter if it takes my daughter one hundred years to do anything. She is a healthy, happy little person, surrounded in love and will always have the support of her family, her friends and her community. Feel free to add me as a friend and visit my profile where I have posted a video of our amazing journey.
Thank you.
What was the speech therapy programme that you purchased?
Many blessings to you and yours. Never doubt. Always think positive. My 4 yr old has come a long way, he has cerebral palsy and don't walk but hes been blessed to be able to move around and make sounds and say a couple of words. Children progress differently some faster than others. Be patient whats meant to be will be but never doubt. My son is getting stonger and stronger as the days go by, no he can't walk but his back has gotten strong enough to pull himself up. Everything will be fine, its a tough road ahead but it'll be okay. I've been through so much with my son, so I understand how you feel. Just take one day at a time.
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