Ma'am I am one of your subscriber all the way from India.. I also have a daughter with Hypochondroplasia. She is now 1 year old.. Her in my state since its very rare the doctors don't have much experience to care achon baby. But your videos have helped a lot and is still helping me in taking care of my daughter.. Thank you so much..
Wow, all the way from india. Just shows how simillar people are all over the world and we all share biological things in common even if we have different political and religious beliefs.
Hi Miracle Oze - congratulations on your baby girl! I see that you are in India. Even in the U.S. it’s not easy to find doctors near me that specialize in skeletal dysplasia. I think the best thing to do is bring her to play spaces with lots of toys and play structures where she can feel motivated to pull herself up to standing and cruise around. You can also encourage reaching for objects/toys and walking up/down stairs preferably holding a rail that she can reach. When the time comes for her to walk up/down stairs make sure she alternates her feet rather than using one foot to walk up/down. That way she can gain strength more equally on both sides and that makes it less likely that she will fall. I’ll try to dig through my notes on PT/OT exercises that have been recommended for my son in the past. Even though it’s very individualized, there are basic things you can do with your child at home. Also, I learned that allowing them to be as independent as possible when they are young helps a lot. Let her get dressed on her own, put away her toys when she’s done playing, and do other things for herself. She will enjoy doing being independent and it will save you time as well. 😊 As for when she start therapies, that’s a very individualized thing. She may not even need therapies at all, every child with skeletal dysplasia is different. I would start by play exercising at home. If you feel she could use the extra help, talk to a therapist and have him/her evaluate and then set reasonable goals for your daughter to work on during the therapy sessions. After a set amount of time reevaluate the goals and build on them or reassess if necessary. At this young of an age, therapy should look more like playing.
@@cynthiaveronica5258 Thank you so much.. You have always motivated me. I was helpless in the beginning and always wished to meet someone who can help me out.. Thank God! I met you.. While I was going through the UA-cam in search of help I came across your channel. Since then I have been following ever tips you said to care for achon baby.. Thank you so much.. Words can't express how thankful I am to you.. Please share as much as you can because now you are like my daughter's doctor.. Thank you so much once again..
@@miracleoze3021 thank you for your kind words. I also think that we as parents know what is best for our children to some extent. Once in a PT session, the therapist we had on that day was young and a bit inexperienced. I saw that my son was working hard but she kept pushing him to do certain exercises. He began to cry because he was tired and she just kept pushing him to continue. I could see he was in pain. I had to step in and say, ‘he needs a break, let him rest for a few minutes’. I said it nicely, and she said ok and left the room and didn’t come back for a while, which I found strange. She could’ve at least had him color or play with play dough, do something to develop fine motor skills with his hands so that his body could rest but still participate in an activity. My point is that in a lot of situations you will intuitively know what’s best for her, and you will be your daughter’s biggest advocate, and as she gets older you will teach her how to advocate for herself, until she will eventually learn to be her own advocate. You know your daughter best and when therapy is going well, you will see it in her, and when it’s not helping her you will see that as well. For major medical decisions that involve surgery, for instance decompression surgery, your doctor will help guide and inform you. Always ask lots of questions and if something doesn’t feel right get a second opinion or keep asking questions until you feel like you are well-informed and comfortable moving forward.
Ma'am I am one of your subscriber all the way from India.. I also have a daughter with Hypochondroplasia. She is now 1 year old.. Her in my state since its very rare the doctors don't have much experience to care achon baby. But your videos have helped a lot and is still helping me in taking care of my daughter.. Thank you so much..
Wow, all the way from india. Just shows how simillar people are all over the world and we all share biological things in common even if we have different political and religious beliefs.
Can you please tell me when can my daughter start with her physio therapy?? She is one year old now..
Hi Miracle Oze - congratulations on your baby girl! I see that you are in India. Even in the U.S. it’s not easy to find doctors near me that specialize in skeletal dysplasia. I think the best thing to do is bring her to play spaces with lots of toys and play structures where she can feel motivated to pull herself up to standing and cruise around. You can also encourage reaching for objects/toys and walking up/down stairs preferably holding a rail that she can reach. When the time comes for her to walk up/down stairs make sure she alternates her feet rather than using one foot to walk up/down. That way she can gain strength more equally on both sides and that makes it less likely that she will fall. I’ll try to dig through my notes on PT/OT exercises that have been recommended for my son in the past. Even though it’s very individualized, there are basic things you can do with your child at home. Also, I learned that allowing them to be as independent as possible when they are young helps a lot. Let her get dressed on her own, put away her toys when she’s done playing, and do other things for herself. She will enjoy doing being independent and it will save you time as well. 😊 As for when she start therapies, that’s a very individualized thing. She may not even need therapies at all, every child with skeletal dysplasia is different. I would start by play exercising at home. If you feel she could use the extra help, talk to a therapist and have him/her evaluate and then set reasonable goals for your daughter to work on during the therapy sessions. After a set amount of time reevaluate the goals and build on them or reassess if necessary. At this young of an age, therapy should look more like playing.
@@cynthiaveronica5258 Thank you so much.. You have always motivated me. I was helpless in the beginning and always wished to meet someone who can help me out.. Thank God! I met you..
While I was going through the UA-cam in search of help I came across your channel. Since then I have been following ever tips you said to care for achon baby.. Thank you so much.. Words can't express how thankful I am to you.. Please share as much as you can because now you are like my daughter's doctor.. Thank you so much once again..
Thank you once again for your quick reply. I was desperately waiting for your reply..😊
@@miracleoze3021 thank you for your kind words. I also think that we as parents know what is best for our children to some extent. Once in a PT session, the therapist we had on that day was young and a bit inexperienced. I saw that my son was working hard but she kept pushing him to do certain exercises. He began to cry because he was tired and she just kept pushing him to continue. I could see he was in pain. I had to step in and say, ‘he needs a break, let him rest for a few minutes’. I said it nicely, and she said ok and left the room and didn’t come back for a while, which I found strange. She could’ve at least had him color or play with play dough, do something to develop fine motor skills with his hands so that his body could rest but still participate in an activity. My point is that in a lot of situations you will intuitively know what’s best for her, and you will be your daughter’s biggest advocate, and as she gets older you will teach her how to advocate for herself, until she will eventually learn to be her own advocate. You know your daughter best and when therapy is going well, you will see it in her, and when it’s not helping her you will see that as well. For major medical decisions that involve surgery, for instance decompression surgery, your doctor will help guide and inform you. Always ask lots of questions and if something doesn’t feel right get a second opinion or keep asking questions until you feel like you are well-informed and comfortable moving forward.
@@cynthiaveronica5258 thank you for all the advise and sharing your experiences.. Hope to keep in touch in days ahead.. Thank u...