Update

Connor had his surgery on June 22. We got there early and got Connor all prepped and ready for the doctors to do the bone plate on his right femur and the Taylor Spatial Frame on his right tibia(We are not lengthening his fibula because it is too small and cannot be lengthened). Surgery went extremely well and Dr.Gordon was very happy with everything. Connor took forever to come out of anesthesia but we finally got to see him around 3pm. Connor and I (Meagan) stayed in the hospital from Wednesday until Monday. Connor had 2 Physical Therapy(PT) sessions each day, once in the morning and once in the afternoon. Connor spent the rest of the time resting and playing electronics and in the playroom which he loves. Sunday morning was a lot for Connor as it was shower day and the day all the dressings came off his leg. even though he has been through this once before it was still quite traumatic to see his leg uncovered. Connor also started the bad foot pain and Dr.
originally thought it was just the AFO strap placement but I knew better, nerve pain had returned. We would get Neurontin (Gabapentin) to control this pain as best we could even though its not 100% its better than screaming in pain. We came home Monday afternoon and got Connor all comfortable at home. We have begun the 3x a week PT sessions at Shriners. It is about an hour drive with traffic and all.

We are now 3 weeks post surgery and Connor is doing AMAZING!! Dr Gordon is very impressed with how well he is doing. Connor is putting tons of weight through the right leg which is what he needs to do to promote bone growth. His measurements in PT are excellent. We do 3x a week PT sessions at Shriners PLUS every day stretches 2x a day. We have found a routine that works best. Pin care is going very well. We soap clean his pin site once every 2-3 days and he showers everyday. We see Dr Gordon this Friday, July 15, for his 2nd follow up.

Brenden and Macie have been staying home with Dad while I take Connor to PT. His work has been extremely flexible allowing him to stay home and help. It has made a world of difference in Brenden and Macie as they get some good time at home and not being carted around the entire city and be bored. Andy works off and on all day getting a lot done for work while also taking time to care for Brenden and Macie. With him doing this he stays up late each night after the kids go to bed and works late into the night to make sure he stays on top of his work load. He has been working very hard for us and I am thankful this company understands and is allowing him the flexibility he needs to help me out.

It still is very stressful around here. Though I highlight a lot of the good I try and keep the negatives out, but there are still very hard and trying days. Connor gets frustrated Macie and Brenden miss me and want more time with me. Connors pain can get quite intense and its hard to comfort him at those times. Andy and I are working extra hard at trying to keep our cool with eachother and the kids. Being either here at home or driving to shriners after a while gets old and we get crabby at eachother. It is not an easy road we are on but we are doing our best and we have had plenty of great quality time as a family watching movies or playing games together trying to make the best of a difficult situation.


Thank you for all your prayers and support.
Meagan

 

 

 

 

Surgery Tomorrow

I Know Right!! As of last post surgery was July 6, well it's changed....again. The whole story...original date was June 1 2016 but we changed it so Connor could attend Camp WeCanDu by DASA so It was then June 29 2016. Due to hospital  staffing it was changed to July 6. At Connors pre op visit April 1 everything was still set and good for July 6. Sometime in May they informed us his date has been changed to July 27!! We said absolutely not, that's only 2 weeks before school starts. why the change? Dr will be out of the country for the holiday week with his family. I understand time with family but they jutted messed up several people's plans for the entire summer. Anyways, our choices were either July 27 and deal with it, push it off another year or get worked in for June 22. We decided June 22 so that we have some of the hardest days behind us when school starts. So we can no longer send Connor to camp which began this past Sunday on Fathers Day. He was bummed but he really is ready to have his surgery.

We made the best of our summer and today is a day of getting everything in order and waiting for the surgery info....yes Shriners waits until the DAY BEFORE SURGERY to give us surgery time and what time we have to be there. 

This long journey is just beginning again with the 3x a week traveling to Shriners for PT and the constant stretching we will be doing at home! I am now updating on here and in a FB group so these next few days will be a lot of taking care of Connor and updating when he is asleep so that he gets my full attention. Andy will be with us tomorrow but he will then be home helping with Brenden and Macie. Thanks for your thoughts and prayers. Connor is a superhero and will kick butt like always!

Another Year already!!!

Well, it has been another year already. Connor continues to excel in everything!! We are gearing up for Connor's next round of surgeries. The date of his surgery has changed once again. Due to the new hospital and their staffing hours his surgery has been changed to July 6, 2016.  So for those who know me I will be putting my 30th birthday on hold until next year;)

This go around we will be lengthening just his Tibia and not the fibula(fibula is too small to ever be lengthened). We will also be correcting the femur where he had the additional break from the 1st lengthening. This will involve straightening the bone with a bone plate. This needs to be done so that Connor can have the Elipse, or Precise, lengthening which is the metal rod inserted inside the leg and no external device is needed. Fixing the break in the femur will actually get another 1.3cm (1/2") in length. As of right now Connor is measuring 11.4 cm(4.5") difference. We are hoping for another 7cm which is just over 2.5". As they told us this lengthening is typically less painful then the femur but please don't let that fool you, we are still expecting a long painful road ahead as this will just introduce different obstacles and challenges that we know Connor will over come in true Connor spirit. We will still have 3 days a week of PT plus our own PT and stretching at home everyday. It will be back to strict schedules of pin care, PT, Stretches, rest and of course all while trying to keep him having fun and in good spirits. Our support system here with family and friends is one I will make sure we use as last time it was terribly hard for Brenden and Macie as well. Maybe some Cardinals baseball games and more quality family time. We are expecting Connor to be in the device until December. I will be working diligently with his school to make sure he is staying with his class and isn't missing much, this will include homebound school on the days he has to leave for PT at Shriners. 

Once we have this lengthening completed he will still have a few more procedures. Connor will be needing another hip osteotomy. Because he is still growing they are concerned with his hip socket and it not being deep enough for the final lengthening of his femur, so before the internal lengthening the will go in and deepen the socket and make his hip more stable. If not he will have major issues with hip dislocation. This will be more discussed once this lengthening is over and healed. At this time there is no concern for his knee(knee instability is very common in PFFD but his knee looks to be pretty stable).This is just giving you an idea of what is left to come.   

So we have 3 weeks to fit in an entire summer this year. We are not doing anything huge as we just are preparing for another intense summer. Kids are all aware of how this summer will be and just like last time we plan on doing something fun and exciting once we all get Connor through this time. I am sure the next time I am updating on here will be Surgery. So lets finish school have a fun month and rock this lengthening just like he did last time!! He is our little super hero!!