Parenting Cerebral Palsy Kids

Hi Lisa. I hope she does surprise you. I would love for my little one to just sit up on her own by her bday. April 21st. She is nearly 9 months old and still not sitting on her own. Could you tell me a little about your LO progress through the past couple of years. I would love to hear her story.

Good morning! Thanks for checking out the board, I hope you stick around. Do you have a diagnosis?

We had difficulties from early with her not rolling over until around 9 months. I don't recall problems with holding her head up normally. She can sit up and has been able to do so, but not straight. That was her problem. She still has low muscle tone in her hamstrings and hips which is causing her not to be able to sit up good and straight. She's gotten good at compensating though. The biggest problem we noted was her not walking on her own by 18 months. She was cruising and holding our hand, but not letting go. AND, walking on her toes. DD's main problem is in her legs, spastic diplegia. She has good balance sitting on something like the kitchen counter or a chair edge, but not walking because she's not putting her foot down completely.

We got her started in the Early Intervention program last February, with an evaluation and physical therapy. (We had the opportunity when she was nine months, but passed because the day before they came she rolled over and we though everything was fine, but it wasn't. She is our first child and I guess we were in denial too.) Anyway, she got a walker in July, but didn't show much interest until getting AFO's, or braces, in September. Now she'll run you down in the walker!

If you haven't already, I'd recommend getting PT involved and address the siting up issue. They can work with LO's early. Her doctor should be able to help get that set up. I wish you both the best and that your LO is up and running soon as well! Please keep us posted, ALL encouragement and good news is definitely welcome! ;)

Thanks for sharing her story in more depth. We are getting PT already. We have a Special Interest therapist come to the house once a week and we have to drive about 45 miles once a week to PT and OT. It seems to me that Alyssa has more problems in her shoulders and hips. Her legs seem strong for now. She can't hold her back straight very well. Maybe her back mucsles are the problem. We do a lot o tummy time in which she fusses. We couldn't deny her problems after her initial diagnosis of Hydrocephalus. Then of course we started noticing her not noticing things. She can't see hardly anything. We go back to the pediatric opthamoligist on the 26th. I really hope she can tell us more. Maybe glasses later on can help. It is hard waiting, but I enjoy every minute with her. She is such a joy. I'm sure your LO is too.

Do you know if there's an Early Intervention program in your state? (Don't remember if you told me where you are.) We were able to get in home PT through them, AND we qualified for it free. It might be worth asking about.

We were also told to have our LO's eyes and teeth checked yearly for CP related problems. Eye doc found micro-strabysmus (lazy eye, a common cp related problem I'm told) for which she isn't prescribing glasses yet because it's so minor, but we go back at six months instead of one year. We go to the dentist in a couple weeks. Hope the ophthalmologist appt goes well!

Yes, my LO is the light of my life! She's awesome to be with, and I'm a SAHM, so I'm with her ALL the time! Of course that can take its toll after a while, but that's when Grandma gets a visit! ;O)