Thursday, March 26, 2015

From lengthening to consolidation

I can't believe how bad my lack of updating has been, I guess we have been busy. So where to start...

Well JP has just hit the two month mark for his ex-fix/ post surgery anniversary. He is doing well adjusting to the ex- fix, but we defintley had some bumps, frustration, and struggles for sure.  We have had a lot of sleepiness nights. And we have had a lot of tears(both JP and me).

He has struggled with keeping his knee and leg straight which is so important during the legthening process. His doctor has pulled out some tricks to assist him. The first one was a cast and extension of his ex-fix, which lasted a week. 

Then we moved on to wrapping his leg up in an immobilizer and that was the answer. 

PT and doctor appointments were a nightmare. He would scream through both if anyone came near his leg or touched it. Most of it was fear with a little pain sprinkled in.

But since the immobilizer- his leg has gotten stronger, he has been able to straighten it himself, PT & stretching have become easier, doctor appointments & X-Ray have become a piece of cake, and he started walking again...and without his walker! 

IWalking is such a big parent milestone, but we have gotten to experience the joy three times now.  He mainly walks with the immobilizer on which does help support him some, but he has taken 10-20 steps without it on in PT.


So it's defintley been a long month. But it's gotten better and as of yesterday, Jonathan is officially done the first phase of the process- lengthening. No more struts turns. All together JP has gained between 3.5-4 cm, which is just awesome!

 He is now on phase two- consolidation. Basically he is now at the point where he'll spend the next couple months letting his bone heal in the ex-fix. The doctor has been happy with his bone regeneration and healing so far. 

On Monday, Jonathan will have the bottom portion of his ex-fix removed, the foot plate. Basically it's a 15 min outpatient procedure where the doctor will remove the wires from his foot and ankle to "free" it. So he'll be able to start walking on his own foot again (and not lose range of motion)!

With the end of lengthening, it means JP should have less pain and  be closer to having his legs equal!


While this isn't the end of the road for Jonathan (for this procedure or journey),  it's an amazing start! We are so happy to see his leg be stronger and look longer! And whole it's been rough, he has amazed us and handles this situation fairly well for a 3 yr old.

And his older brother, Aiden...has been amazing too! He has been shuffled to grandparents and therapy appointments continuously. He has listened to his brother scream and yell, cried and be scared, and just be grumpy at times. Through it all, Aiden continues to be so supportive and loving. His school work and attitude hasn't changed one bit. We are so proud of him  and how wonderful a big brother he is!