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. 

Happy Memorial Day Weekend!

Sorry for the long overdue update but you can imagine how busy our life is now.

Connor continues to stay strong. He try's and stays as happy as he can but he still has many difficult moments of not just pain but the whys. It's hard to get a 6 year old to understand and even harder for him to control his emotions when the pain is just excruciating.

We saw the drs Wednesday and had X-rays done. He's got about 2" of new bone growth! And had another 3/4" taken off his lift. The bonus break is healing but it will need to be fixed after the Fixator is off, there is nothing that can be done now. We should be done turning Wednesday May 28th, we have another dr appointment that day so we will see if turning will be officially over. They have some concern with the lower half of the break closer to the knee in that it is being pulled down and they may have to try and align it better, but that will be addressed next visit. 

Physical Therapy...well it plain sucks. We are going to talk to the dr about having Connor talk to a therapist and maybe discuss if there is something he can take for the anxiety he gets during PT. We are running out of ideas to keep him calm but his PT sessions are screaming to the point where he has been moved to a private PT room during the stretches as to not scare or distract the other patients. He hates it. His behavior during this time is something we have never seen and I can't stand seeing him like that. The good is that once PT is over by the time we are outside he has calmed down but is very tired(I would be too the way he gets all worked up and screams. I'm surprised he hasn't lost his voice.). 

Connor graduates Kindergarten this Tuesday!! Seems like he just started school yesterday. 

As for this weekend. We are going to try and relax and enjoy it. We have been invited places but he haven't committed to anything yet. 

Thank you to all who have served and are currently serving our country and who lost their lives protecting our country! Happy Memorial Day!

Busy Busy Busy

Our updates will be more along the lines of once a week for now. Things are busy around here:)

Connor has had quite the busy week. Since his awesome baseball game last Wednesday, his week wasn't done yet. Connor went back to school for 2 hours a day on Thursday!! He was SO EXCITED!! I drove him Thursday and Friday and then Monday he got to ride the bus to school!! He is thrilled to be back at school with his friends!!

Saturday he got to go to a friends birthday party and he had a great time! Then Sunday we went to the Spirit of St. Louis Air Show and saw all kinds of cool airplanes and helicopters and then watched the air show which featured the AMAZING Blue Angels!! It was spectacular!! He has not stopped talking about how cool the airplanes were but the coolest part for him was that he and Brenden and Dad got to take a ride in a Huey Helicopter!!! The smile on their faces brought tears to my eyes. To see my kids enjoy the ride and experience with their daddy!! That day, to me, was my Mother's Day!! We spent all day there and even though it was very hot during the show and we all got a little crabby it was still a day I know I will never forget! Then yesterday (Tuesday 5-6) I took the kids to go swimming at Aunt Laurie's!! Once again another day that was fun and helped take the stress away and see the kids being kids and the Fixator not being this thing keeping him from doing things he loves. I see us at Aunt Laurie's quite often over the summer, get ready Aunt Laurie the Maine's will invade your pool, but we will always ask and make sure we take great care of everything! Blessed to have such a great support group and family:) 

Onto the lengthening news. We did more X-rays today and spoke with Dr Miller, Dr Gordon's associate, and we were told that the new bone growth looks great. That we only have 21 more days of the distraction phase(turning the struts) and that the "bonus" break is doing what was pretty much expected. We will NOT have to have another pin placed at the moment and our next follow up is in 2 weeks. They are pretty confident that the bonus break is more set now and is just healing. The nerve pain in Connors foot is still present but no where near as bad as it was a few weeks ago, he is still on the Neurontin and it seems to be keeping it well controlled. He still has some pain in his foot but he can tolerate it now. The stretches are the same, very hard very painful and very emotionally draining for both Connor and myself. After stretches and PT there is just no comforting him and his physical therapist, Andy and I have all just agreed that for the 30 mins post PT and stretches to just leave him be, don't talk or try and comfort because he just won't listen get angry and yell. So as bad as it sounds we all ignore each other and after about 30 mins he's out of his mood and back to that sweet little boy we all know! Today at PT Connor took steps without his walker or holding onto anyone!!!! This is something he has been working so hard to accomplish and once again, this very proud momma had tears in her eyes!! I will take video of him taking these steps all by himself!! 

Brenden came down with strep throat again Monday evening:( he also had an amazing time on the helicopter. He is growing up so fast and is doing so well in school! He and Connor really are best friends and I love seeing them play and have fun together.

Macie is still adjusting to everything. Not only is she having to share mommy with Connor more she hit the terrible 2s and hit it hard. When she's with GiGi or Mawmaw she is very good(at least I'm told) but when she's with me she is definetly testing my patience. But she always gives me loves. Quick story, We got home today from PT after picking up Macie and I told Macie "go inside and sit down for lunch" she said "hold on mommy I need to help 'Connie' (how she says Connors name)" and proceded to go to him and try and help him out of the car. She loves her big brothers so much.

Connor really is the bravest boy I know. People asking him if it hurts and he says "no not really, you just have to be strong and brave like me!" I am so proud of him! 

One moment, One step, One day at a time!! 

Overdue Update!

So not too much has happened since the last update. Connor still has the break and we are still lengthening! 

Over the weekend we celebrated Brendens 1st Holy Communion. It was a beautiful day and a beautiful ceremony. 

Sunday we relaxed and did a bunch of nothing! Had PaPa OG and Uncle Patrick over for the famous "Grandma Tacos" GiGi is in California. 

We are still going to Shriners 3 times a week and it gets increasingly more difficult for Connor each time with his stretches. Yesterday (Tuesday) we scored tickets to the Cardinals game for Today (Wednesday)! I am updating from 7 rows back from the field!! 

We tried to get some autographs but we missed the players:( 

More to some serious news. Connors break is getting worse. Because the Fixator is so heavy it's pulling the break up, if it pulls up anymore we will have to have surgery to insert another pin for more support. 

This xray shows his break. Look at the top ring you will see a pin going into the bone and the bone broken right at it. 

We are trying to stay positive! On that we have separated and 1.5" and have beautiful new bone growing!!

So while sitting here updating a foul ball came flying our direction and a gentleman behind us was able to get it and gave it to Connor!! STL Baseball fans truly are the Greatest in baseball!!!