Back to Baseball Already!

Here is how Connor finished up his last few games. In the batters box and pitching. Totally did not expect him to participate this spring. Also finished the school year with an awesome report card and was chosen as S.H.A.R.K. of the month in his classroom. SHARK stands for safe, honest, accountable, role model, and kindness. Heading off to 4th grade!!!! 

We're still here!

Hello again! I know it's been awhile since I have blogged. We have been caught up with spring sports, school ending, now summer camps starting and the list goes on. I am happy to report that Connor's appt went well yesterday with Dr. Standard. Xrays showed more bone growth and the shape of the femoral head continues to look great. Connor's ROM shows more progression each time he gets measured. Dr. Standard emphasized again the importance of working hard with his exercises whether it is at home or in PT. The most challenging part for Connor right now is his running and his external rotation in his hip is still weak. Dr. Standard and his PT staff gave us some good tips and exercises to focus on, particularly for these areas. We will continue his aqua therapy too. His PT in Hershey continues 3x week. We will re-evaluate his progress again at the end of summer to determine the number of PT sessions. The most beautiful words that I heard in yesterday's visit from Dr. Standard, "I believe Perthes is behind you now". Those 7 words will forever be in my mind. So proud of my little guy for BEATING this disease!!! We met some new friends at Sinai yesterday. Another young boy around Connor's age. As Connor was having his PT session, this other boy was too. The other boy just had his ex fix put on a week ago. So, their journey was just beginning. It was a very bitter/sweet moment for us. Sweet in the fact that it was a reminder of how far Connor has come in this journey. (So glad to be on this side of journey) But bitter to watch another child going through this. You could just see the distress on the mother's face. For us, remembering those very difficult months. It immediately brought my emotions right back to that time period. She and I spoke briefly about the boys. Come to find out they are staying at the RMH, just like we did. RMH is a wonderful place. I LOVE that we are constantly reminded of the wonderful people and resources available to us and other families. We had one more mission in Baltimore yesterday. Over this past year, our family and Central York School District went together and collected TABS from cans. Together we collected 22 bins! The Baltimore RMH uses these tabs for their shuttle, for gas money or other needs for the shuttle. We chose TABS as our mission because the shuttle was a huge resource for us when we stayed there. We used the shuttle several times a day for his appts. We hope to continue this mission and welcome you to join in on the fun!

Running, Jumping and Biking, Oh My!

We are so happy to report that Connor is cleared to run, jump and basically be a kid again. He has waited so long for this moment. In fact, when the Dr. left the room, Connor started jumping, just because he could. The X-rays, again, displayed great position and shape of the ball joint. The new bone growth has filled in nicely. Connor has 3 more weeks of wearing the brace at night, or at least we thought. Dr. Standard told Connor he can be done with the brace in the evening as well. This was definitely a pleasant surprise. Of course, with all this great news, came an enormous amount of worry for Scott and I. We did question the Dr. about the risks of injuring his hip, or falling off his bike etc. Dr. Standard assured us that his hip is "contained" and will be fine. He also made the comment, if Connor would fall and get injured it would not be from Perthes. The injury would happen regardless of his diagnosis. Finally, after a long day in Baltimore, we headed out the door to our car. Connor looked at me and said, "I'll race you to the car?" I looked down at my flip flops, along with carrying a bag and said, SURE! We probably looked a little crazy but I wasn't going to pass up this opportunity to FINALLY race my son again. Of course, I let him win! :-)
PT continues to be 3x a week in Hershey. The PT staff have been so good with Connor. They also feel as though he is ready for more intense exercises. Glad we could give them the green light to do more. Connor still walks with a slight limp and runs extremely funny but the more ROM he can gain, the better he will walk and run again.
Once again, more prayers have been answered. As we continue on this journey, we are reminded of all the blessings along the way and got us to where we are today.

We are still truckin'!

So these blogs have been few and far between lately. Honestly, there hasn't been a lot to update. Connor has adjusted very well to being back at school. Hard to believe that he missed 6 months. I have to admit, the number of absent days on the recent report card gave me a little anxiety. His teacher has been a phenomenal support throughout his school absence and continues to be supportive. She has monitored him closely and reports that his transition back to school is going well. He is SO happy to be back with his friends and starting to feel the "normalcy" again.
Another great note is Hershey PT is going VERY well. Again, Connor's flexibility and adjustment to change has been fabulous! He has created, yet, another bond with his new PT ladies. He has made great strides with his ROM. They have been doing a wide variety of exercises with him and keep him guessing as to what will be next. Some days he has been lucky enough to have PT with a Hershey Bears Hockey Player. How cool is that?
I know this may sound redundant but many thanks go out to friends and family who have kept Connor and our family in their prayers. We thank God each day for the blessings and answered prayers. We continue to feel blessed by the love and support. The phrase, "It takes a village...", has a whole new meaning for us. We certainly couldn't have done this journey ourselves, our "village" reached out and made this journey easier.

Back to school! :)

Sorry this blog entry is late With all the transitions taking place it was tough to find the time to update. So, Connor is thoroughly enjoying being "brace-free", as you can imagine. He is doing pretty well managing his physical activity at home. Although, once he is at school, I have no idea what is going on at recess and maybe that is for the best. ;-) Last week was another big week of milestones. Started off on Monday, March 31st with Connor's last PT in Baltimore. The PT ladies were so sweet and threw him a mini party. They had donuts (Connor's favorite), balloons, and cookies. It was definitely a bitter, sweet feeling saying goodbye to the PT staff that has nurtured my son on this journey since day 1. They, too, were saying how their patients come and go but to see a patient from the beginning to where he is now is rare.They all said how much they will miss him. Most of the patients live out-of-state and cannot commute. We are so thankful that we had the opportunity to commute as much as we did. The staff at Sinai took such good care of Connor. This journey has had its range of emotions, but the staff always knew how to reassure us that things were ok. They will always have a special place in our hearts. We can't thank you enough for taking care of our sweet boy! 

The next milestone was starting school on April 1st, and this was not a joke! He did some full days and some half days. He seemed to adjust well the first week. Many teachers and kids were very excited to see him back to school. He also transitioned his PT to Hershey Pediatric Therapy Services last week. His first evaluation went well. Ms. Betty took all kinds of measurements and checked his ROM. Boy, was that an easy trip to and from. Most days, Connor will do PT at the end of his school day so he won't miss much work. Thanks to my parents who continue to be our greatest support and their willingness to watch Callie and get Emma off the bus when needed. 

Next up for Connor on this journey is to manage his physical activity for a few more weeks til his next x-rays and appt with Dr. Standard. He will still have a limp for some time til he gains all ROM back and gains muscle strength again.

Thanks again for all the support from friends and family. Your prayers and well wishes are much appreciated. Our journey is far from over, but your continued support has made this journey easier.

This picture is taken at the bus stop on his first day back to school. 

 

Guess what?!!

Just gonna come out and say it.......CONNOR IS BRACE-FREE!!!! Finally, the moment where I can watch my son walk without metal, plastic, or leather assisting his walking. Of course while I cried tears of joy, he displayed that incredible smile of his!! This has been an amazing month. I feel as though every week there has been huge milestones accomplished. Dr. Standard was extremely happy with Connor's X-rays today. In fact, I think his exact words were, "These X-rays are an out-of-the-ballpark home run!" More bone growth and shape of the new bone growing in is "beautiful". Connor's femur bone is healed enough to start strengthening exercises in PT. With all of this said, the day time brace is no longer. However, Connor will continue to wear the brace during the night for another month or 2. The tough part now is to keep Connor from over doing it. He feels so good and wants to just take off. His activity is still very limited for another 4 weeks until our next appt. Here is a picture of Connor with the incredible Dr. Standard! 

Wow! What a Day!

Connor enjoyed his first week of walking without crutches. He seemed to adjust quickly. He learned some new exercises this week which involved some movement of his 'stubborn' knee. A few yoga moves were also added to his daily regimen of exercises. Even though he has not been "cleared" yet to start hard core exercises with his knee, over time his knee continues to improve. Today, Friday, March 21st is the day before we see Dr. Standard. Therefore, updated measurements of hip and knee needed to be taken. Personal gains were made by his measurements today. Connor's Hip Flexion (pulling leg up towards head) is 100 degrees. Hip Abduction (making snow angel movements) is 40 degrees. I was told a "normal" hip is 45. His knee made a jump to 75 degrees!!!!!! We continue to be so proud of our little guy! We can't thank the PT ladies and gentlemen enough at Sinai who assisted in every step (literally) of the way with Connor. The pictures are Connor demonstrating his yoga moves.