Connor has been doing tremendously well! His strength and perseverance is one to be admired! We are enjoying a fun filled summer since last year we were working so hard with Connor. This summer has been filled with camping with family, a trip to the Lake of the Ozarks for a fun filled weekend, an AWESOME float trip with AMAZING friends, six flags, Connors DASA Camp Wecando which has been by far the most fun and rewarding event this summer, per connor's opinion and many trips to Aunt Laurie's pool and the neighborhood pool.
Let me catch you up on what went on since last update back on August 1st 2014! Holy cow that was SO long ago!!
So August 20, 2014 Connor had his "fixinator" removed, after 141 days he was free of that device! He still had a lot of work to do but that dreaded device was GONE!! Dr Gordon let him keep the pins and he was so excited to keep them!! For the next 2.5 months we continued to go to PT 3x a week. Pulling Connor out of school and driving to Shriners was extremely taxing on the family, but we made it through. We dropped down to 2x a week in October which was a huge improvement!! One day made a huge difference in connor's performance in school and on the budget. It was after Christmas we went to 1 day a week and then to once everyother week then to once a month!! It was a lot of work but Connor had an amazing PT Ms. Jenni who helped him through it all!!
Andy and I also thought it was best for him to talk to a therapist. He was having a hard time with his emotions during this whole process. She too was wonderful and made room in her busy schedule to see Connor. She use to be the therapist the lengthening children would talk to but they no longer offered it at Shriner's so once a week for a few months we drove to Glennon's Childrens Hospital for those visits. It was a little after the new year we decided, the Dr Andy and I, that Connor didn't need to be seen again until the next lengthening.
Connor had his 1 year follow up on April 22, 2015. The following is from my FB post the day after our visit:
"We spent the day yesterday at Shriners. Connor had physical therapy and it was the last session until next lengthening! He has progressed wonderfully! Almost all of his range of motion has returned. He will still be fatigued in his leg. His physical therapist said that it usually takes a year after surgery for everything to be 100% again and his last surgery was August when his fixator was removed!
His X-rays Looked great! The healing of the lengthening site and his additional break healed great. If you remember after the break his femur healed with a bow in it so with his next lengthening that will be corrected.
Now, onto lengthening surgery number 2. His next lengthening will be of his Tibia and Fibula (the lower leg). The doctor is hopeful for another 2". On top of the lengthening he will have the femur fixed so that when we lengthen the femur again it is fixed and will be able to accommodate for the rod that will be placed, but that surgery is still a ways away. What we were not prepared for was how soon the doctor wanted to do the next one. Connor is scheduled for his second lengthening June 1, 2016, yes 1 year 1 month and 9 days! We were thinking more like 2 years but the longer we wait the faster he grows the harder it will be to get as close to even as possible!
So this summer we are planning on rocking it out! Doing things we know we won't be able to do next summer...camping with family, float trip with awesome friends, lake trip and a surprise trip for the kids!
We all made it through the first lengthening. The really bad days for Connor, the days Brenden just begged for me to stay home and play with him and the days Macie wouldn't stop crying, but we did it. None of us want to see Connor go through these procedures but it's best for him. Telling Brenden yesterday and seeing the sadness in his eyes that his brother is going through this again and that I once again won't be able to spend as much time with him broke my heart.
Together we will make it through this and get Connor running with both feet on the ground!"
We know in our hearts that we are doing whats best for Connor! Since this was posted in FB we have changed his surgery to June 29, 2016 so that he can enjoy Camp Wecando before beginning the next round of lengthening. We are going to try and fir 3 months of vacation into 1 short busy month and while we have some ideas we don't have anything set in stone except Camp which will be June 19-24. Next round we are going to try and find PT here in Wentzville, not because we don't love Ms Jenni and Shriners but because Shriners moved to a brand new facility another 15 mins into the city, and its just way to much driving for all the PT he is going to be needing.
We do have one more surprise for the kids instore in September! School is just around the corner and Connor will be in 2nd grade!! Brenden will ne in 4th grade and Macie is starting preschool!! These kids are growing up way too fast!! We return to Shriners around March next year to talk more in-depth with his surgeon on the lengthening, until we are enjoying our summer and vacations and looking forward to the rest of the year!
So this summer we are planning on rocking it out! Doing things we know we won't be able to do next summer...camping with family, float trip with awesome friends, lake trip and a surprise trip for the kids!
We all made it through the first lengthening. The really bad days for Connor, the days Brenden just begged for me to stay home and play with him and the days Macie wouldn't stop crying, but we did it. None of us want to see Connor go through these procedures but it's best for him. Telling Brenden yesterday and seeing the sadness in his eyes that his brother is going through this again and that I once again won't be able to spend as much time with him broke my heart.
Together we will make it through this and get Connor running with both feet on the ground!"
We know in our hearts that we are doing whats best for Connor! Since this was posted in FB we have changed his surgery to June 29, 2016 so that he can enjoy Camp Wecando before beginning the next round of lengthening. We are going to try and fir 3 months of vacation into 1 short busy month and while we have some ideas we don't have anything set in stone except Camp which will be June 19-24. Next round we are going to try and find PT here in Wentzville, not because we don't love Ms Jenni and Shriners but because Shriners moved to a brand new facility another 15 mins into the city, and its just way to much driving for all the PT he is going to be needing.
We do have one more surprise for the kids instore in September! School is just around the corner and Connor will be in 2nd grade!! Brenden will ne in 4th grade and Macie is starting preschool!! These kids are growing up way too fast!! We return to Shriners around March next year to talk more in-depth with his surgeon on the lengthening, until we are enjoying our summer and vacations and looking forward to the rest of the year!
No comments:
Post a Comment