Our daughter Riley is almost 2 years old and we plan that she will have SuperHip and SuperKnee surgery with Dr. Paley at the end of the year. She is very mobile (walk, kind of run, kick, climb, etc.) with a ~3 inch shoe lift on her left leg - more adventurous and mobile sometimes than her twin brother (who does not have PFFD).
Would anyone be willing to share their experience with either or both of these surgeries? We will be staying with family while we are in Baltimore so at least that part is covered.
A few questions to get started:
1. Did you experience any loss of mobility or comfort after the surgery? How long until your child was fully mobile again? (4 months? 6 months? longer?)
2. How did you keep your child occupied and happy (and the parents and siblings too!) while they were in the spica cast, and then in the intense physical therapy 6 week period?
3. Did you have the stabilizing tendon cut in preparation for future lengthening? What are the pros and cons of that? (sorry I don't remember the name - the one that runs from the top of the femur down the outside of the thigh to your knee)
Many thanks to everyone for this site.
Comments
Entertainment!
Lots of ideas....
Movies begged and borrowed - everything from Disney to Veggie Tales.
sticker books
colouring books,
gluing and sticking
story books
stickers
I don't have experience of the surgeries you're talking about however when our daughter had surgery in January we discovered lots of great things to keep her busy. We are big movie fans so we loved siting down together watching everything from cinderella (i almost know it by heart) to the tigger movie. We also found that friends gave us lots of things to keep our little one busy. If anyone says to you "If there's anything i can do to help, just ask ......" ASK! People like to feel useful so ask for something to add to the 'keep busy box'
Hope all goes well. Jo X
Keep Busy box and other ideas
keep busy box - what a great concept! I will remember that. Thanks very much for the ideas and good wishes.
answer to your ?'s
We have a son who had both those surgeries about 13 months ago... And I am so glad that he did. He is so much more mobile now.. still strugles with the new knees in his prostetics.. But doing well. He went to the movies while in his cast.. He played vidoe games. He had friends over. He was 5 at the time of his surgery. I wish we would have done it along time ago. Don't let them sit in bed the whole time treat them like you usually would that is how we did it.
SuperHip and SuperKnee more
Thank you very much for your comments. She is so mobile now as a 2 year old in her 3 inch shoelift that I've been worried about losing mobility or going from her having no discomfort to her having some kind of long term pain or discomfort. Of course every person is different. I just want to have realistic, even worst case expectations for her recovery path (how long, whether she might lose mobility/comfort for 6 months, 1 year, 2 years, compared to now) and from there, no matter what happens we'll just work with it a day at a time. So, I appreciate you sharing your experience with your son.
Also, I assume people who have hip surgery at her age, 2 years old, have to expect to need hip surgery again as a young adult. if anyone has comments on that, i'd appreciate it.
And I will take your advice about getting her out. Seems that Sinai has information on special car seats etc. that I can learn from.
Best Regards,
Thoughts on the Super Hip....
Our little girl McKenna was the first one to have the Super Hip surgery done. Before that they used to do 2 surgeries to get the same result. After we were done we definately noticed improved range of forward motion, and also an easier "gait" when she walked. In our case the deformity of the hip limited how well her leg moved as she walked. By correcting the position of the hip socket and also repairing the "bend" in McKenna's thigh bone we also gained some length at the same time. The end result was wonderful, and even though she was in a cast for around 6 weeks once she came out it was like a whole new world for her. The amazing part is that she was so young when all of this happened and she just bounced right back. Sometimes I forget that PFFD is all she has known in her life, and most of the things I think she cannot do or handle she just does. It is amazing how quickly they adapt to things. Feel free to email us at ChuckBerg@msn.com if you want to ask any questions. We wish you all the best of luck, and keep posting everything you can....It always ends up helping someone!! God Bless!
Chuck, Karla, Dylan & McKenna