Today, was Faith's six month follow up from her gastrocs surgery at Shriners.
We had an incredibly busy day...8 am Shriners, 1pm double therapy and 2:45pm meeting at supply closet. So we got to Shriners early with a letter in hand from our PT, discussing our current concerns about her orthopedic issues. We have seen a new crouched gait in the last month (where as before her surgery, she was hyper extending her knees) as well as some changes in her pelvis alignment in turn affecting her gait, creating a "windswept" step. Also we had seem quite a bit of muscle atrophy in her lower calf, just where her braces start. You could see and feel a distinct line where they started and the muscles went from normal feeling to very soft. So first off, they got us in with the PT to have a look at her structure and how she was walking and all the good stuff. She told me that Faith's crouching was a result of the new range of motion in her ankles and calves as well as shortening of the muscles around her hips. Although no one wants her to walk crouched, crouched is better than hyper extention. She also said it was a functional gait for her that also provided her with a measure of stability. She was not worried about the tibial rotation that we were concerned about because she said that it was coming from her pelvis also not her leg. She did say that Faith had Patella Alta- where her patella (knee cap) rides too high in her knee area from the muscles pulling. Apparently very common in kids with CP, but yet another issue that I had never heard of or even thought of!
Of course, after all our concerns and worry and all the effort our PT went to to send a letter... Faith did almost none of those things while we were there! Actually, she made a BIG FAT LIAR out of me! When they asked me to put her in her walker, she walked out into the hall and proceeded to walk up and down the hall for over half an hour...until the doctor finally came to see us! She had never walked that far or that long...EVER! I stopped briefly to chat with a nurse we knew and in about 30 seconds, she had made it to the double doors at the end of the hall about 50 feet away! She walked straight without pulling to one side and she did not do her soldier march that she usually does! I know, I know, A LIAR!
All in all, they seems thrilled and very happy with her progress. They gave us the go ahead to take her braces off at night as well as her knee immobilizers and to take them off during therapy! WOOOOPEEEEE! As well as taking them off when she is playing in the floor. They said she needs to stay in them about 80% of the time now...(although, I can't figure out how keeping them off for therapy, play on the floor and sleep equals anything less than 80%) but I guess we will figure it out! We went to therapy afterwards and started right away with working with no braces. They told me today that the next six months need to be muscle building time. And you can tell she needs it when those braces come off. She is soooo weak.
Of course, after all our concerns and worry and all the effort our PT went to to send a letter... Faith did almost none of those things while we were there! Actually, she made a BIG FAT LIAR out of me! When they asked me to put her in her walker, she walked out into the hall and proceeded to walk up and down the hall for over half an hour...until the doctor finally came to see us! She had never walked that far or that long...EVER! I stopped briefly to chat with a nurse we knew and in about 30 seconds, she had made it to the double doors at the end of the hall about 50 feet away! She walked straight without pulling to one side and she did not do her soldier march that she usually does! I know, I know, A LIAR!
All in all, they seems thrilled and very happy with her progress. They gave us the go ahead to take her braces off at night as well as her knee immobilizers and to take them off during therapy! WOOOOPEEEEE! As well as taking them off when she is playing in the floor. They said she needs to stay in them about 80% of the time now...(although, I can't figure out how keeping them off for therapy, play on the floor and sleep equals anything less than 80%) but I guess we will figure it out! We went to therapy afterwards and started right away with working with no braces. They told me today that the next six months need to be muscle building time. And you can tell she needs it when those braces come off. She is soooo weak.
So tonight our girl went "commando" no braces no knee immobilizers...just SOCKS!
FYI: for those of you who gave me all the good advice about inviting our PT over, I made a preliminary move and invited her to lunch, next week. She seemed really excited and asked how early we should meet so we would have time to talk before we went to therapy! LOL! So we are going to a local dessert/sandwich deli that Carl says is really good. Can't wait! She is so wonderful! She got lots of compliments from the folks at Shriners for her dedication and commitment to Faith! WHOOOOOO, E, we sure do love you!
FYI: for those of you who gave me all the good advice about inviting our PT over, I made a preliminary move and invited her to lunch, next week. She seemed really excited and asked how early we should meet so we would have time to talk before we went to therapy! LOL! So we are going to a local dessert/sandwich deli that Carl says is really good. Can't wait! She is so wonderful! She got lots of compliments from the folks at Shriners for her dedication and commitment to Faith! WHOOOOOO, E, we sure do love you!
5 comments:
So typical of our children to make liars out of us!
I'm glad the appointment went well and you heard some good news.
Good job in asking to have lunch with the PT!!
Sounds like good news at the appt. but don't you just love how there is always something to keep an eye on. I bet Faith is loving the freedom of no braces and immobilizers!
I had to laugh at her making a liar out of you, go Faith :D Great news all the same :) Jen.
Noah has made a liar out of me several times.
Let me know next time you are in the Greenville area and maybe we can meet up for lunch or something!
More joys of parenting, eh? Seems to me she's made liars out of many professionals these past years - no?
Great news on the leg front!
Barbara
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