Hello - You are all probably wondering why the title says knees up? When Josie walks she usually swings her straight legs around with her hips instead of lifting her knees. After 3 days she is totally initiating her knees up instead of swinging. We were all so excited especially her. Her comment was that now she won't make so much noise with her shoes dragging along the ground. Bless her heart. I delight in the small things that she accomplishes everyday during this therapy. It is like warp speed. Her therapist have also decided to keep her (leg) braces off. They feel like if they can strengthen and train the proper muscles and tendons then she will walk correctly without the assistance of devices. We have been pulling our hair out at home with our orthopedic doctor, Dr. Kay, our orthopedists Jeff and Susie from Orthopliance Group, our physical therapist, Susan Knight, and the head of the gait lab, Susan at Childrens Hospital LA (CHLA) trying to figure out if the braces were making her right foot turn in or where it was coming from. She has had her Polish orthopedic shoes on her without braces and has initiated the best steps I have ever seen from her. I hope I'm not making everyone at CHLA quake in their boots!!! On another exiting note she is up to 50 sit ups on her own. She needs so much core strength to hold up the torso and overcome that tone issue.
They are really working on the mobility of her left hand and arm. As most of you know she has very limited use and control of this hand. We are assuming that it was damaged by a stroke during separation surgery or damaged at least during that time. I will have to ask Dr. Lazareff if he knows. Anyhow, it will be great to get some more use from it. Jen Loiselle, her Occupational therapist extraordinaire at CHLA will be jumping with joy from that!
It is pouring down rain her tonight so we didn't get to swim. As a result it took her forever to fall asleep. She needs that extra movement in the pool to relax those muscles. She is so excited (beyond excited) to start her synchronized swimming class tomorrow. My mom and I are getting such a good chuckle over this. The good part is that all the little girls will be flailing around the pool with the appearance of drowning so this might be the one place we look like we belong!! The performance is on her birthday, July 25 and I promise to take video and post it. I'm sure with tech support and 3 weeks to learn how to do that I will be able to!
I have to send a special thanks to our amazing therapists at home. Susan Knight (who happens to be in Italy right now, lucky girl), Jen Loiselle both from CHLA and Liz Bunkell in Santa Clarita for all their incredible work they did with Josie this year. Without them we won't be as strong or in such a great mindset to be able to tackle this. You guys are the best with her. Thank you a million times. We miss you a lot. ( I can guarantee the halls of the 4th floor Orthopedics at CHLA will be a lot quieter for 6 weeks. Rosalia might get some work done in peace!!)
We miss all of you and it is hard to be gone so long, but I know this is the right thing for Josie. Our window of opportunity is closing so we have to strike when the iron is still hot. We are both ready to fight the good fight. Thank goodness for our relatives here in Grosse Point, Jeanie, Roger and Aunt Harriet. It is reasurring to have them right around the corner. My love to all. Good night. Jenny
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