SelenaDad
11-08-2007, 11:05 PM
Kaitlyn mom,
How is Kaitlyn doing now? Wish he is doing great.
Well, it's official, Kaitlyn will be going for the SDR with Dr. Park in late October. We are really excited, and of course very nervous too! Here are a few questions on logistics for all of you parents who have made the trip out there...
1. Did any of you stay at the Parkway Hotel? If so, how were the accomodations? My husband and I plan to switch off sleeping at the hospital, so one of us would be at the hotel each night.
2. We are wondering if we need to rent a car, or if we can get by without one. Is the Parkway hotel within walking distance of the hospital? If not, is there a shuttle to take us back and forth? If so, how often does it run? Also, are there shops and restaurants within walking distance of the hotel?
Finally, as far as the surgery goes, our biggest concern is the immediate recovery period. How much pain did your kids experience immediately following the surgery? How about when they got home? For those of you who flew, how did your child manage on the plane ride home?
Okay, that should do it for now. Thanks for any help you can give us!
Tara
How is Kaitlyn doing now? Wish he is doing great.
Well, it's official, Kaitlyn will be going for the SDR with Dr. Park in late October. We are really excited, and of course very nervous too! Here are a few questions on logistics for all of you parents who have made the trip out there...
1. Did any of you stay at the Parkway Hotel? If so, how were the accomodations? My husband and I plan to switch off sleeping at the hospital, so one of us would be at the hotel each night.
2. We are wondering if we need to rent a car, or if we can get by without one. Is the Parkway hotel within walking distance of the hospital? If not, is there a shuttle to take us back and forth? If so, how often does it run? Also, are there shops and restaurants within walking distance of the hotel?
Finally, as far as the surgery goes, our biggest concern is the immediate recovery period. How much pain did your kids experience immediately following the surgery? How about when they got home? For those of you who flew, how did your child manage on the plane ride home?
Okay, that should do it for now. Thanks for any help you can give us!
Tara
Sponsor
Kaitlynsmom
11-27-2007, 10:46 PM
SelenaDad -
Thanks for asking about Kaitlyn. I can't believe that we are nearing the one year mark since Kaitlyn's surgery! Overall, her progress has been great. She is much looser than before surgery. Some of the things that she can do now that she couldn't before include floor sitting unassisted, and taking a few independent steps. She is still walking with her walker, but can now use 2 tripod canes for very short distances. She continues to gain strength, but still has a long way to go in that area. Both Dr. Park and Kaitlyn's physical therapist believe that she will eventually walk independently, and that is the goal we are all working toward. Please let me know if you have any other questions!!!
Also to Noah's and Maggie's parents - I'd love to hear how they are doing!
Thanks for asking about Kaitlyn. I can't believe that we are nearing the one year mark since Kaitlyn's surgery! Overall, her progress has been great. She is much looser than before surgery. Some of the things that she can do now that she couldn't before include floor sitting unassisted, and taking a few independent steps. She is still walking with her walker, but can now use 2 tripod canes for very short distances. She continues to gain strength, but still has a long way to go in that area. Both Dr. Park and Kaitlyn's physical therapist believe that she will eventually walk independently, and that is the goal we are all working toward. Please let me know if you have any other questions!!!
Also to Noah's and Maggie's parents - I'd love to hear how they are doing!
MagsMom
12-01-2007, 10:48 PM
Hi All!
Maggie continues to do well. It's been 20 months since her SDR. We had our final check with Dr. Park this summer and he discontinued her clinical physical therapy. We still do stretching at home but no longer have to make the trips in to the PT. All the trips to the PT were well worth it though. I couldn't have done this without them. She still gets fatigued with long distances, such as trips to the mall. By the time she walks in and gets through a couple stores, she's pooped! But at 15, that's pretty standard for anyone with CP. She did have some tendon surgery on her left foot this year just to help keep her foot flatter instead of pronating so much. It was very successful and for the first time in a long time she is walking with no pain. Such a relief!
Keep posting. I login frequently to check on everyone!
Jamie
Maggie continues to do well. It's been 20 months since her SDR. We had our final check with Dr. Park this summer and he discontinued her clinical physical therapy. We still do stretching at home but no longer have to make the trips in to the PT. All the trips to the PT were well worth it though. I couldn't have done this without them. She still gets fatigued with long distances, such as trips to the mall. By the time she walks in and gets through a couple stores, she's pooped! But at 15, that's pretty standard for anyone with CP. She did have some tendon surgery on her left foot this year just to help keep her foot flatter instead of pronating so much. It was very successful and for the first time in a long time she is walking with no pain. Such a relief!
Keep posting. I login frequently to check on everyone!
Jamie
nwmom
12-02-2007, 09:24 PM
Hi--glad to hear everyone is doing so well post-op! Noah is doing great, too. One of the best things is that he seems happier overall since the surgery (which was in May of '06). He makes friends now in his preschool class and can move faster so he can sort of keep up with them. Before surgery, he was far less social. He's less fussy at home, too. He's learning how to do lots of things he couldn't do before surgery. One big milestone for him has been to learn to take on and off his clothes, which requires a lot of balance and leg maneuvering! He sits on a stool and puts on his underwear--I sometimes have to help him a little. We've worked on this for months now, and it's finally paying off for him. He's just much more mobile in general and has much more endurance than before surgery. He walked around our block the other day, which is a big block. He only stopped once for a half a minute and didn't say he was tired til he was nearly home! Took us 30 minutes(!), but we didn't care--we were all so excited for him to do this! We didn't go back for our final follow-up with Dr. Parks, since it's about 11 1/2 hours away for us. But we're really glad we did the surgery and worked hard on the post-op therapy, because it's paying off for him in many ways!
nwmom
nwmom
SelenaDad
12-03-2007, 12:14 AM
Nwmom, Kaitlynsmom, MagsMom,
It is so great to hear Noah, Keityn, Magie are doing well, especially congratulations for their great progress.
Selena is 6 years old now, and was found mild CP when she was 2 years old. As all you have done, she has been going through PTs for years.
She is able to stand by herself with wearing Brace, also she is able to stand with bare foot but not very stable. Walker is her primary mean in school, and she prefer walk without walker in house, instead using wall and furniture as help. Selena also can walk ten or 20 steps (not stable) independently. Her feet are pretty much inward.
We have realized that some of her capability degrades, for instance she is not able to stand by herself without help, but she could stand by herself when she was 3 years old. I wonder if it is standard for CP since her muscle does not getting stronger enough in terms of proportional to her weight etc.
Selena also tried Botox in Wake forest hospital in Winston Salem, it did not last long, just 3-4 weeks. In fact we wasn’t ware the SDR option until a couple of month ago when we visited Dr. Alexandre in UNC. Plus Dr. Campion (Orthopedics) also recommends Dr. Perry in UNC health center SDR for Selena.
Then We have met with Dr. Perry in Nov. It bother me a little is that he still need large cut and remove 5 to 6 back bones for surgery. I found in website Dr. Park has modifed procedure and remove only a couple of back bones, I am not sure if it true.
We have an appointment with Dr. Perry’s PT for video-taping Selena, anything we need to pay more attention? I also hope that this video tape can also be used to Dr. Park for evaluation in case we decide to go see Dr. Park. So far we have not decided if we do SDR in UNC or see Dr. Park. I lean to Dr. Park since all you have visited him and very positive.
Thanks,
Selena's Dad
It is so great to hear Noah, Keityn, Magie are doing well, especially congratulations for their great progress.
Selena is 6 years old now, and was found mild CP when she was 2 years old. As all you have done, she has been going through PTs for years.
She is able to stand by herself with wearing Brace, also she is able to stand with bare foot but not very stable. Walker is her primary mean in school, and she prefer walk without walker in house, instead using wall and furniture as help. Selena also can walk ten or 20 steps (not stable) independently. Her feet are pretty much inward.
We have realized that some of her capability degrades, for instance she is not able to stand by herself without help, but she could stand by herself when she was 3 years old. I wonder if it is standard for CP since her muscle does not getting stronger enough in terms of proportional to her weight etc.
Selena also tried Botox in Wake forest hospital in Winston Salem, it did not last long, just 3-4 weeks. In fact we wasn’t ware the SDR option until a couple of month ago when we visited Dr. Alexandre in UNC. Plus Dr. Campion (Orthopedics) also recommends Dr. Perry in UNC health center SDR for Selena.
Then We have met with Dr. Perry in Nov. It bother me a little is that he still need large cut and remove 5 to 6 back bones for surgery. I found in website Dr. Park has modifed procedure and remove only a couple of back bones, I am not sure if it true.
We have an appointment with Dr. Perry’s PT for video-taping Selena, anything we need to pay more attention? I also hope that this video tape can also be used to Dr. Park for evaluation in case we decide to go see Dr. Park. So far we have not decided if we do SDR in UNC or see Dr. Park. I lean to Dr. Park since all you have visited him and very positive.
Thanks,
Selena's Dad
nwmom
12-03-2007, 08:22 AM
The recovery time is much quicker with Dr. Park's procedure, and with Selena being 6 years old, that would be a big help for you all. Whereever you decide to do it, you may want to consider doing the surgery in the summer so that she can have time to do her therapy, which is lots (both at home and at PT) at first.
Also, we found a hidden clause in our insurance which allowed us to get the surgery covered, even though it was out of state and out of network. I can ask my husband about it and let you know if you're interested.
Also, we found a hidden clause in our insurance which allowed us to get the surgery covered, even though it was out of state and out of network. I can ask my husband about it and let you know if you're interested.
open_the_door
12-04-2007, 09:30 AM
Nwmom, Kaitlynsmom, MagsMom,
It is so great to hear Noah, Keityn, Magie are doing well, especially congratulations for their great progress.
Selena is 6 years old now, and was found mild CP when she was 2 years old. As all you have done, she has been going through PTs for years.
She is able to stand by herself with wearing Brace, also she is able to stand with bare foot but not very stable. Walker is her primary mean in school, and she prefer walk without walker in house, instead using wall and furniture as help. Selena also can walk ten or 20 steps (not stable) independently. Her feet are pretty much inward.
We have realized that some of her capability degrades, for instance she is not able to stand by herself without help, but she could stand by herself when she was 3 years old. I wonder if it is standard for CP since her muscle does not getting stronger enough in terms of proportional to her weight etc.
Selena also tried Botox in Wake forest hospital in Winston Salem, it did not last long, just 3-4 weeks. In fact we wasn’t ware the SDR option until a couple of month ago when we visited Dr. Alexandre in UNC. Plus Dr. Campion (Orthopedics) also recommends Dr. Perry in UNC health center SDR for Selena.
Then We have met with Dr. Perry in Nov. It bother me a little is that he still need large cut and remove 5 to 6 back bones for surgery. I found in website Dr. Park has modifed procedure and remove only a couple of back bones, I am not sure if it true.
We have an appointment with Dr. Perry’s PT for video-taping Selena, anything we need to pay more attention? I also hope that this video tape can also be used to Dr. Park for evaluation in case we decide to go see Dr. Park. So far we have not decided if we do SDR in UNC or see Dr. Park. I lean to Dr. Park since all you have visited him and very positive.
Thanks,
Selena's Dad
If I may ask, what type of CP does your child have? My son has CP diplegia. He is 3 years old(a twin), and he is going to preschool 3 times a week. He also has a walker, but the school and I have decided that we do not want him to use the walker. He really wants to use it all the time, but I have taken it away from him, forcing him to go without it. His walking has improved so much because of it. He walks very, very slow, but with pretty good balance. He falls alot, and has really mastered it. HE scissors badly when he uses the walker because he supporst himself too much with his upper body, that is why I have taken it away from him. When I go to a store, or his doctors appts. I put him in a stroller. To all of his therapies, or school, I make him walk. I know that he will greatly benefit from this.
Sometimes we have to do things that the child does not like, but in the long run, it is much better for them......
It is so great to hear Noah, Keityn, Magie are doing well, especially congratulations for their great progress.
Selena is 6 years old now, and was found mild CP when she was 2 years old. As all you have done, she has been going through PTs for years.
She is able to stand by herself with wearing Brace, also she is able to stand with bare foot but not very stable. Walker is her primary mean in school, and she prefer walk without walker in house, instead using wall and furniture as help. Selena also can walk ten or 20 steps (not stable) independently. Her feet are pretty much inward.
We have realized that some of her capability degrades, for instance she is not able to stand by herself without help, but she could stand by herself when she was 3 years old. I wonder if it is standard for CP since her muscle does not getting stronger enough in terms of proportional to her weight etc.
Selena also tried Botox in Wake forest hospital in Winston Salem, it did not last long, just 3-4 weeks. In fact we wasn’t ware the SDR option until a couple of month ago when we visited Dr. Alexandre in UNC. Plus Dr. Campion (Orthopedics) also recommends Dr. Perry in UNC health center SDR for Selena.
Then We have met with Dr. Perry in Nov. It bother me a little is that he still need large cut and remove 5 to 6 back bones for surgery. I found in website Dr. Park has modifed procedure and remove only a couple of back bones, I am not sure if it true.
We have an appointment with Dr. Perry’s PT for video-taping Selena, anything we need to pay more attention? I also hope that this video tape can also be used to Dr. Park for evaluation in case we decide to go see Dr. Park. So far we have not decided if we do SDR in UNC or see Dr. Park. I lean to Dr. Park since all you have visited him and very positive.
Thanks,
Selena's Dad
If I may ask, what type of CP does your child have? My son has CP diplegia. He is 3 years old(a twin), and he is going to preschool 3 times a week. He also has a walker, but the school and I have decided that we do not want him to use the walker. He really wants to use it all the time, but I have taken it away from him, forcing him to go without it. His walking has improved so much because of it. He walks very, very slow, but with pretty good balance. He falls alot, and has really mastered it. HE scissors badly when he uses the walker because he supporst himself too much with his upper body, that is why I have taken it away from him. When I go to a store, or his doctors appts. I put him in a stroller. To all of his therapies, or school, I make him walk. I know that he will greatly benefit from this.
Sometimes we have to do things that the child does not like, but in the long run, it is much better for them......
nwmom
12-04-2007, 10:01 PM
Open the door--
Our son Noah has spastic diplegia, and he sometimes used a walker, too, before he had his SDR surgery. Everything you said about your child with the scissors, going slow, falling a lot, walking long distances was true about Noah, too. Sounds like you'll really be helping him a lot as far as strength and endurance and bone growth (from putting more weight on his feet) by getting him out of the walker more. Good luck to you!
Our son Noah has spastic diplegia, and he sometimes used a walker, too, before he had his SDR surgery. Everything you said about your child with the scissors, going slow, falling a lot, walking long distances was true about Noah, too. Sounds like you'll really be helping him a lot as far as strength and endurance and bone growth (from putting more weight on his feet) by getting him out of the walker more. Good luck to you!
SelenaDad
12-06-2007, 09:24 PM
@Open the door
Thanks for the good suggestion. I just hesitate to ask Selena not to use walker in school since she can hardly walk by herself. Well she might do it by holding the wall or fixtures... Mybe we could push her to use crutches instead walker. I will talk to her teacher and school principal about it. good luck to your son, seems he is able to handle the situation in school without walker.
@NoahMom,
Thanks for your offer of insurance. Yes, I am starting looking into out of state insurance coverage. We are with BSBC.
It was my thought too for Dr Park 's procedure, that is better for quick recovery. It is too far from us, how do you come back from St Loius, by car or by flight? How difficult to have Noah a long trip back just after sugery?
Selena is 6 years old, but she is sensitive. We are trying to build up her stronger personality now, but not sure how. We might spoiled her a little!
Thanks,
Thanks for the good suggestion. I just hesitate to ask Selena not to use walker in school since she can hardly walk by herself. Well she might do it by holding the wall or fixtures... Mybe we could push her to use crutches instead walker. I will talk to her teacher and school principal about it. good luck to your son, seems he is able to handle the situation in school without walker.
@NoahMom,
Thanks for your offer of insurance. Yes, I am starting looking into out of state insurance coverage. We are with BSBC.
It was my thought too for Dr Park 's procedure, that is better for quick recovery. It is too far from us, how do you come back from St Loius, by car or by flight? How difficult to have Noah a long trip back just after sugery?
Selena is 6 years old, but she is sensitive. We are trying to build up her stronger personality now, but not sure how. We might spoiled her a little!
Thanks,
nwmom
12-11-2007, 08:07 AM
We flew up and back for the surgery, and got the airport shuttle service to drive us to and from the airport to hotel. We stayed at Parkway Hotel, which is connected to the hospital through walkways. They give discount rates for hospital guests.
There is also some kind of free small airplane service you might could get a ride with. When kids have surgery, the big airline pilots do this on the side as a charity to help out kids and fly the family in their small planes. My husband is afraid of small planes; so we didn't do this!
nwmom
There is also some kind of free small airplane service you might could get a ride with. When kids have surgery, the big airline pilots do this on the side as a charity to help out kids and fly the family in their small planes. My husband is afraid of small planes; so we didn't do this!
nwmom
Kaitlynsmom
12-12-2007, 10:13 AM
open-the-door... Kaitlyn also had spastic diplegia. She is now 3 & 1/2, and cannot get around without her walker. However, we have seen lots of improvements since the SDR, especially in her sitting and standing. She is starting to use tripod canes around the house, and we have just ordered forearm crutches for her. Our goal is that Kaitlyn one day will walk on her own, which Dr. Park believes is a possibility for her. We'll see!
SelenaDad - If you can look into the possibility of traveling to St. Louis to have Dr. Park perform the surgery, I would highly recommend it. He has really streamlined the procedure to make the recovery easier for kids. Also, he has done more SDR surgeries than any other person in the world, which put our minds at ease thinking that Kaitlyn was in the best hands possible. As far as travel, American Airlines has a program called "Miles for Kids in Need", where they provide flights for families who need to travel to receive medical care for their children. I'm sure you can find information on the American Airlines website.
Good luck!
SelenaDad - If you can look into the possibility of traveling to St. Louis to have Dr. Park perform the surgery, I would highly recommend it. He has really streamlined the procedure to make the recovery easier for kids. Also, he has done more SDR surgeries than any other person in the world, which put our minds at ease thinking that Kaitlyn was in the best hands possible. As far as travel, American Airlines has a program called "Miles for Kids in Need", where they provide flights for families who need to travel to receive medical care for their children. I'm sure you can find information on the American Airlines website.
Good luck!