Trying to be positive...

I've posted before about Hannah having CP and some motor skill delays. Some days I just get down about it... maybe I'm just being whiny but it's hard having one baby who is on the verge of walking, crawling everywhere, and one who is struggling so much... not even pulling up yet. Just recently she has starting sitting up on her own well. I know it's not my fault (she had a grade 3 brain bleed which caused most of this) and if she never walks I will be happy that she is here because ALOT could have gone wrong during my pregnancy and I am extremely lucky to have her here. It was like this in the NICU too... Hailey had virtually no problems while Hannah struggled practically everyday. She's just been through so much and some days I just wish she could magically get better.

I guess sometimes I just get a little down about and then I feel guilty for being down because I know I should be thankful to have her period. Thanks for letting me whine a little.

Anybody have some positive CP experience they can share with me?

 

No experience with CP but just wanted to offer :hug: From a mom of 29 weekers, one which struggled in the beginning and continues to have delays.

 

I have worked with many CP kids. The key is to keep on working, through EI, and then as she ages through preschool. The more mobile you can get her, the better mobility she can have. Enjoy her! Concentrate on what she CAN do! CP kids can be very bright and engaging people! The kids that I taught, although they had CP, were in regular classes all day.

Another thing to look at, as she gets a bit older, starting around 3-5 years, is Theraputic Horsemanship. This is a program designed to combine horses with therapy. One of its advantages is that it uses the body heat of the horse to relax muscles, allowing them to stretch out longer. Also, it works with balance.

Good luck, and feel free to contact me with any questions!

 

:hug: No experience, but I sounds like you are an amazing Mom and you just want the best for her. So heartwarming.

 

The valedictorian of my high school class had CP. She was one of the most intelligent people I ever knew. I don't have any other experience with CP than that. But hang in there, mama...kudos to you for having so much strength to handle it all. *hugs*

 

QUOTE(DATJMom @ Mar 19 2009, 09:55 PM) [snapback]1236253[/snapback]
:hug: No experience, but I sounds like you are an amazing Mom and you just want the best for her. So heartwarming.


Thank you so much for that. It actually made me tear up a little. I just have this (irrational maybe?) fear/concern that I'm going to do something wrong and am not going to be a good mom. Thanks to the others for the encouragement. The horse therapy sounds interesting, I had heard of that before but never really knew the details. I think there is actually a place nearby that does that or something similar. We have been told that the CP is very mild and that by the time she is 2/3 we will never know there was anything wrong with her. I guess sometimes when the progress is slow it's a little hard to see.

 

Maybe I can help! I was diagnosed with mild CP when I was around 8 months old (my parents noticed that I crawled kind of funny). It affects my left side - leg, arm and eye, but mostly my hand - I have very limited fine motor skills. I also walk with a slight limp. Other than that, most people don't even notice. It hasn't affected my cognitive ability at all. I had EI til I was 3 and then PT and OT (occupational - for the fine motor skills) until I reached middle school.
I'm 22 now. I can do pretty much everything, including driving a car. I even nanny for twins (which is tough enough to do with two hands!) It has been tough, but I've learned to adapt and do most things with "one and a half hands" I wear contacts, and I often get discouraged, especially because sometimes I still struggle with the littlest things. But I'm incredibly blessed and I try to remember that. If I hadn't been such a stubborn kid and did all of my stretches at home,, I'm sure I'd be in even better shape. (Save this post and show it to Hannah when she's about 7. She'll thank me later!)
You are completely entitled to feeling down a little bit, so long as you don't forget what an amazing little girl you must have!

 

i have no experience but just wanted to offer you hugs! it sounds like you have a serious challenge but you are holding up as well as you can... i agree that you sound like a great mom and just the fact that you are worried says so much.... and, no two children/siblings are ever exactly alike. yours might have more differences than most but it's up to us as parents to treat them as individuals and learn to love them for who they are. in that sense, you will be just like all other parents--and we'll all struggle together.

best of luck and keep us posted,
jl

 

:hug:
Come vent away! Even if we don't have the experience to offer advice, there's tons of support. Hang in there. You are doing a great job!

 

QUOTE(BounceTigger @ Mar 19 2009, 10:25 PM) [snapback]1236285[/snapback]
Maybe I can help! I was diagnosed with mild CP when I was around 8 months old (my parents noticed that I crawled kind of funny). It affects my left side - leg, arm and eye, but mostly my hand - I have very limited fine motor skills. I also walk with a slight limp. Other than that, most people don't even notice. It hasn't affected my cognitive ability at all. I had EI til I was 3 and then PT and OT (occupational - for the fine motor skills) until I reached middle school.
I'm 22 now. I can do pretty much everything, including driving a car. I even nanny for twins (which is tough enough to do with two hands!) It has been tough, but I've learned to adapt and do most things with "one and a half hands" I wear contacts, and I often get discouraged, especially because sometimes I still struggle with the littlest things. But I'm incredibly blessed and I try to remember that. If I hadn't been such a stubborn kid and did all of my stretches at home,, I'm sure I'd be in even better shape. (Save this post and show it to Hannah when she's about 7. She'll thank me later!)
You are completely entitled to feeling down a little bit, so long as you don't forget what an amazing little girl you must have!


Thank you so much for your encouraging and uplifting story! :hugs: We are doing PT and OT now.

 

:hug: Debbie! You are doing an amazing job!! I am sorry that this is weighing so heavily on you. :hug:

 

:hug: :hug: :hug:
You are not being whiny!!!!!!
I think it would be very normal to be down at times, try not to be so hard on yourself *hugs*

Dianna

 

:hug: I just wanted to send some hugs your way :hug:
I don't have any experience with CP myself but I have a student that I see, she was diagnosed with CP at age 2. Her parents were told that she would probably never walk, talk or go to school. She walks and talks great (has a slight limp), graduated high school and is a sophomore in college. She's involved in campus life and has been the stage manager for the school theater productions in both the fall and spring semesters. This young lady is an inspiration to see how much she's proved her doctors wrong and continues to do so!

You are doing a great job Momma! Hang in there!

 

:hug: One of my friends has CP. She is a mom of 2 and a wonderful awesome person. I know its so hard not to compare especially one is on the verge of doing so much and the other is struggling. :hug: to all of you while navigating all of this.

 

Sending you some hugs. I know it's hard to watch one twin struggle while the other moves forward.

We're doing some treatments with Kevan -- who has a whole host of developmental delays -- that I'm feeling really good about, and I know they're beneficial for kids with CP. Please PM me if you want more info!

 

No advice but wanted to say that you sound like an amazing mom. Stay strong! Your little girl is lucky to have a mommy like you.

 

I could tell by reading your post that you are a wonderful mom-please dont doubt yourself!
Your babies are lucky to have you as their mom-and you should be really proud!
Good luck to you and your sweet little girl-she is going to do great!

 

QUOTE(dlong83 @ Mar 19 2009, 09:33 PM) [snapback]1236121[/snapback]
Anybody have some positive CP experience they can share with me?



See the little guy on the right on my avatar??? He was a 29 week preemie that had a grade IV brain hemorrhage. He has left hemi CP. He is holding a trophy he won at his Karate tournament today!!! :banana: (he is tilting his head on purpose to "pose" LOL)

Nathan is doing awesome. He is in 1st grade and academically advanced and participates in regular classroom and regular gym class. He received OT pretty much from leaving the NICU, but did not receive any PT until he was 11 months after being diagnosed with CP. At one he could not walk either. He didn't walk until 16m(actual age) He now runs, jumps, climbs, does karate, rides his bike(still with training wheels, but we are working on it) He does wear a hinged AFO on his left foot/leg.

Any time you have a question about CP, therapies, treatments, or just need a BTDT :hug: feel free to ask or PM me.

HTH :hug:

 

QUOTE(sharongl @ Mar 19 2009, 10:02 PM) [snapback]1236164[/snapback]
Another thing to look at, as she gets a bit older, starting around 3-5 years, is Theraputic Horsemanship. This is a program designed to combine horses with therapy. One of its advantages is that it uses the body heat of the horse to relax muscles, allowing them to stretch out longer. Also, it works with balance.


We have a 10 year old family member with CP that has been involved in this for years. He LOVES it! He grins ear to ear the whole time he is on his horse. Awesome program!

You sound like a wonderful mom. Your girls are lucky to have you. :hug:

 

QUOTE(CCJN @ Mar 21 2009, 04:01 PM) [snapback]1238521[/snapback]
See the little guy on the right on my avatar??? He was a 29 week preemie that had a grade IV brain hemorrhage. He has left hemi CP. He is holding a trophy he won at his Karate tournament today!!! :banana: (he is tilting his head on purpose to "pose" LOL)

Nathan is doing awesome. He is in 1st grade and academically advanced and participates in regular classroom and regular gym class. He received OT pretty much from leaving the NICU, but did not receive any PT until he was 11 months after being diagnosed with CP. At one he could not walk either. He didn't walk until 16m(actual age) He now runs, jumps, climbs, does karate, rides his bike(still with training wheels, but we are working on it) He does wear a hinged AFO on his left foot/leg.

Any time you have a question about CP, therapies, treatments, or just need a BTDT :hug: feel free to ask or PM me.

HTH :hug:


Thank you soo much! Your boys look great btw! Hannah had a grade 3 bleed. It resolved but left an area of damage. We were told that judging by where it was located it would most likely affect motor skills in her right leg but we have also noticed her having left handed tendencies and the pedi said this was due to the CP. Glad to hear such a wonderful success story from a fellow 29 weeker. :hug:

 

My nephew has CP due to my SIL having pre-e and having to delivery him very early (6 or 7 weeks early, can't quite remember). Initially it was thought that he wouldn't even be able to ride a bicycle, but now at 3 1/2 he is getting around on a bike better than my girls. He has had PT since early on and has hit all his milestones. He has been a little behind my girls, but not by much. He can run, climb, ride bikes, and he currently takes gymnastics to help him with his flexibility and other muscle issues. He does have to wear braces on his legs, but he can get around well and does everything by himself. Sure, it takes him a little longer, but he plays with my girls just like any other 3-year-old little boy would. It's absolutely fantastic what PT has done for him.

 

QUOTE(dlong83 @ Mar 19 2009, 08:33 PM) [snapback]1236121[/snapback]
I've posted before about Hannah having CP and some motor skill delays. Some days I just get down about it... maybe I'm just being whiny but it's hard having one baby who is on the verge of walking, crawling everywhere, and one who is struggling so much... not even pulling up yet. Just recently she has starting sitting up on her own well. I know it's not my fault (she had a grade 3 brain bleed which caused most of this) and if she never walks I will be happy that she is here because ALOT could have gone wrong during my pregnancy and I am extremely lucky to have her here. It was like this in the NICU too... Hailey had virtually no problems while Hannah struggled practically everyday. She's just been through so much and some days I just wish she could magically get better.

I guess sometimes I just get a little down about and then I feel guilty for being down because I know I should be thankful to have her period. Thanks for letting me whine a little.

Anybody have some positive CP experience they can share with me?


Hi...I actually didn't know your story and have to say that it's nice to see someone else struggling with this too (sorry...I hope that doesn't sound really awful). But my Ben has been diagnosed with CP and I feel the exact same way. It's so hard to see him so delayed and then see his twin doing so well. It sounds like Hannah is doing great! Ben is 18 months old now (16 adjusted) and only started sitting well a few months ago.

Someone else mentioned horse therapy...we're planning to do that with Ben this summer hopefully. I hear great things about it and both Ben's PTs think it would be great for him.

So...no real positive story here but someone who is in the same boat...so maybe that'll help?

Are there any CP support groups in your area? There aren't any here but I've decided that I'm going to start one. I so need to meet other moms/dads dealing with similar issues.

Cary

 

QUOTE(caryanne07 @ Mar 22 2009, 05:24 PM) [snapback]1239554[/snapback]
Hi...I actually didn't know your story and have to say that it's nice to see someone else struggling with this too (sorry...I hope that doesn't sound really awful). But my Ben has been diagnosed with CP and I feel the exact same way. It's so hard to see him so delayed and then see his twin doing so well. It sounds like Hannah is doing great! Ben is 18 months old now (16 adjusted) and only started sitting well a few months ago.

Someone else mentioned horse therapy...we're planning to do that with Ben this summer hopefully. I hear great things about it and both Ben's PTs think it would be great for him.

So...no real positive story here but someone who is in the same boat...so maybe that'll help?

Are there any CP support groups in your area? There aren't any here but I've decided that I'm going to start one. I so need to meet other moms/dads dealing with similar issues.

Cary


Hi, it sounds like you know exactly what I mean! Thanks for responding, it didn't sound awful, it IS nice to see that I'm not the only one! I'm glad to hear Ben is doing well. I'm going to ask our PT if she knows of any horse therapy places nearby for the future. And yea, even though they are two different kids it's so hard to not compare them. I've gotten much better at that lately but still catch myself doing it. :hug: Thanks again for sharing.

 

Follow this link for certified places for Theraputic Riding: http://www.narha.org/Centers/FindCenter2.asp

It does have locations in Canada and the US.

 

QUOTE(sharongl @ Mar 22 2009, 06:43 PM) [snapback]1239638[/snapback]
Follow this link for certified places for Theraputic Riding: http://www.narha.org/Centers/FindCenter2.asp

It does have locations in Canada and the US.


thanks Sharon, found 2 places close by actually! She's still young for it, but I will definitely keep it mind for the future!

 

QUOTE(dlong83 @ Mar 22 2009, 06:40 PM) [snapback]1239564[/snapback]
And yea, even though they are two different kids it's so hard to not compare them. I've gotten much better at that lately but still catch myself doing it.


I still do this too. It's hard not to even if they weren't twins and just siblings.

I talked about the boys and their Karate trophies. They both received a trophy, but didn't get to compete together. Nathan is still down in Karate kids (basic entry level) where Jacob has moved up to the next level class where he had to compete in sparing and kata and placed first in his group for kata. It is hard not to compare and wish the if only.... for Nathan. But, I am so proud he got out there and did it. He worked so hard at that tournament. He is just starting to learn a Kata Jacob mastered months ago but I was still nearly in tears the other night when he completed it for the first time, he was wobbly and losing balance and it was not smooth and precise, but he did it, all the steps I guess my long winded response is just to say as your daughter grows she will amaze you in ways you won't believe. I have always treated both boys the same, let Nathan try anything he is willing to and if its harder for him or takes longer to learn that is ok.

Cary I also found issues finding CP support groups in my area. I have found a few online CP support groups that are good. If your interested let me know I can PM you the sites.

 

QUOTE(dlong83 @ Mar 22 2009, 05:40 PM) [snapback]1239564[/snapback]
Hi, it sounds like you know exactly what I mean! Thanks for responding, it didn't sound awful, it IS nice to see that I'm not the only one! I'm glad to hear Ben is doing well. I'm going to ask our PT if she knows of any horse therapy places nearby for the future. And yea, even though they are two different kids it's so hard to not compare them. I've gotten much better at that lately but still catch myself doing it. :hug: Thanks again for sharing.


Hi Again. I just wanted to share my experience with you today so you can know that you really aren't alone in this.

We go to weekly classes at My-Gym (www.my-gym.com). They are in a class for 15 to 23 month olds. Of course, Ben is WAY behind. Usually I don't mind it so much since we're so busy with them. But during "separation time"...where the kids play with toys and the parents try to sneak away, I was really caught offguard by my emotions. Just watching all the other kids walk and sit and kneel while Ben just layed on the floor was so upsetting for me. I was so glad when one of the instructors sat him up so he looked "more normal".

God...I'm tearing up now just writing this reply. It's such an emotional rollercoaster for me.

Anyways...just wanted to let you know you aren't alone.

Cary