Hot Summer Days!!

Summer vacation is going well!! Kids are having fun and keeping very busy! So blessed to have great friends who let us swim at their house as much as we like, although with how busy we are we are lucky to make it once a week. 

Connor has turned a huge corner. I did not believe the nurse and physical therapist that it would get easier after we finish turning. Well I was proven wrong! We have decreased the amount of pain meds Connor gets to just before PT and stretches. We are beginning to taper off the Neurontin, this is not a med the dr said we can just stop we need to take him off slowly. 

Physical therapy has improved dramatically. He still gets some pain and discomfort while bending his knee but no where near the pain it was. Our happy fun loving Connor is back!!! Smiles all the time and telling everyone about how excited he is to have his fixinator and make his little leg big. He does not remember those really bad days and I thank God for that everyday!! Connor uses his crutches mainly but is even walking around the house without anything!! He is beginning to remove the knee stabilizing bar at PT and walking without it. It is a challenge for him but he will be walking without that as well before we know it. Connor walks on the treadmill and does the wii fit board at PT. He has come such a long way and I am so incredibly proud of him!! 

Some of the summer fun we have had is a lot of time with GG at aunt Laurie's swimming. And time playing with Mawmaw. But we have also had lots of Brenden baseball games and seen some movies. I plan on trying to see some of the 250 STL cakes also.

We are excited to be meeting a lot of PFFD families this weekend at the first Midwest PFFD picnic. Hopefully we can help answer questions for families trying to make the best decisions for their child and for Connor to meet kids who are all special just like him!! 

As far as his bone looks we did X-rays and everything looks great and right on track. I did not ask when the frame will come off, I don't want to rush because this takes time. So we just take things one at a time and are trying to make this a fun summer vacation. 

Hope this post finds you all well and enjoying the summer! 

Finally, Summer Vacation

It is finally summer vacation is here!! After the never ending school year things are going to calm down just a bit. Don't have to rush to get kids on the bus and remembering what day to tell the bus driver to bring him home or not bring him home! It's a little sad to say that we have a 3rd Grader and 1st Grader!! Where does the time go?!

Onto lengthening news. We stopped turning on May 28. Connor has gotten 2" of new bone growth. From here on out he is in consolidation mode. We could have gotten another 1/2" but we decided that because of the bonus break we didn't want to put even more stress on the bone. We are very happy with the 2"! He got the struts removed and just 3 bars in its place. Connor was nervous about this but as his nurse said "this is one step closer to getting the fixinator off!" We still have a few months to go. We are shooting for October. It would be great if it was a Birthday present and it came off in September but if he can get it off before Halloween he can be Ironman Connor for Halloween without having to cut up his costume! We are continuing to do PT 3x a week. His nurse and physical therapist did say that since we are done turning the stretches should get a bit easier, we will see. From those I have talked to who have already been through this seem to have said otherwise but every child is different. To help with PT we are now rewarding Connor; if he goes 3 sessions without screaming too loud and being nice and not showing signs of aggression he gets stickers on his chart and then he gets a toy! This has worked well. So far he's gotten a toy plane from the movie Planes and a TMNT game. Connor has graduated from a walker to crutches and is even walking around the house from time to time without ANYTHING!! His bonus break is healing but we will need to address it after the Fixator is off; our focus right now is the bone growth and consolidation. 

As for this summer goes, we plan on swimming a lot at aunt Laurie and uncle johns house as long as their pool is free. I hope to take them to do some things around St. Louis like a trip to Ted Drews, they have never had yet!! Maybe science center, zoo, arch, grants farm and hopefully a few baseball games just to name a few.