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!!

A Very Long Overdue Update!

Way Overdue Update!

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!

 

Four Months already!!

(Connor lost his first tooth while at PT a week ago!) 

So tomorrow, Aug 2, will mark 4 long yet short months being in the Fixator. Since last update there has been a lot of ups and downs and "I'm bored!" 

It has been a good summer but Macie and Brenden are missing Connor and myself an aweful lot. They go 3 days a week to either GiGis or mawmaws while Connor and I head off to PT. Connor has 'graduated' from the wheelchair to walker to crutches to NOTHING! Yes that's right Connor is walking unassisted! He has been working so hard gaining muscle strength back and relearning how to walk without support. 

So 3 weeks ago Connor had a dr appointment which went very well. The dr started the process of getting him prepard for getting the frame off by removing 1 of 3 support rods that replaced the struts we were turning. He removed the inside bar and the last 3 weeks Connor has been walking around putting so much weight on his leg. 

I had a little mom getaway with my mom and sister at my aunts lake house and dad was home with the kiddos. Andy had the kids doing all sorts of fun things and totally forgot to so his stretches that weekend. It's been a little difficult getting those muscles loose again but nonetheless Connor is getting them stronger everyday. I'm just so glad the kids got good quality time with daddy! 

We have done some fun things and even did some cake hunting like I promised! We have spent at least one day a week swimming and have been trying to enjoy the beautiful summer weather we have been getting here in STL. 

Summer is winding down for the boys. They got their school papers in the mail last week and got all their school supplies. Brenden is going into 3rd Grade and Connor into 1st!! It's surreal how fast they are growing up. I spent last week speaking with the buses to get Connor set up and will speak with his teachers next week to figure out when the best time of the day is to take him to PT. I had to wait to speak with Dr Gordon today so we know how Connors leg was looking.

So today was dr visit with Dr Gordon. We did X-rays and PT. Dr is thrilled with how well Connor is doing so he took out bar 2 of 3 to help get Connor ready for when the Fixator comes off on August 20th! YES YOU READ THAT RIGHT THE FIXATOR IS COMING OFF AUGIST 20TH!!! We are so amazed by Connor and so is dr Gordon. He surpassed his expectations!! We will still be doing PT 3x a week but the bone is healed and the dr is ready to have it removed once Connor walks for a few weeks with just the 1 support bar. This is because dr doesn't want to go from 100% support on the leg to nothing that is why they are weaning him from the 3 bars down to the 1 next with the Fixator removal!! As difficult as this has been on all of us it's been pretty smooth sailing. We were diligent with pin site care and only needed to do antibiotics for "iffy" looking sites 2 times. The extra break is something dr Gordon said he won't address until his final femur lengthening unless something else arises with it so we are talking a good few years from now on that. 

(The pic above is the last 2 X-rays, on the left is from July 7, and on the right is today's! Notice how strong the bone is today from just 3 weeks ago!)

I am so blown away by all this! Connors strength and determination and being totally taken off guard when dr said let's set a date for 3 weeks to take it off!! Connor still has a long road ahead with PT but he did it!! I  am so proud of him!! 

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.