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. 

Another Milestone

Another milestone along this Perthes journey today. Click here to see the video! Connor was introduced to walking on his own without crutches. He still wears his brace at all times. Pt was extremely happy with his ability to walk without support. Of course, I had the happy tears flowing today when I saw him walking. It truly is amazing to think back to what this little boy has had to endure in the last 8 months. I want his strength. I want his courage. I want his perspective. This little boy will never know how much he has taught me. He also had some great success with the ROM in his knee today. With some minimal assistance, the ROM in his knee was 72 degrees. We continue to visit Baltimore 3x a week for 2 more weeks, then transfer to Hershey in April. Although, Baltimore hasn't been an easy task. We feel Connor wouldn't be where he is and doing so well without the experienced PT staff at Sinai. Absolutely no regrets! Way to go, Connor! 

Out with February and onto March!

Did you know that Feb. 28th is Rare Disease Day? Who knew? So I only felt that it was appropriate to post an entry on this special day in honor of Connor and all his 'Perthes' friends whom we have had the pleasure to meet. You are the bravest and strongest kiddos that I have ever been around. You have reminded us that the little things in life are the best, to slow down and embrace each day.
Connor ended his 2 week intense PT sessions today. The therapists are very happy with his progression over the last 2 weeks. He has graduated to 3x a week starting Monday, March 3rd. We will continue to travel to Baltimore through the end of March. We received the green light from the therapists to transition PT to Hershey Pediatric Rehabilitation services, starting in April. Homebound Instruction will continue through March. A special thank you to Mrs. Oakley, Connor's tutor, for being so flexible with our schedule and helping him continue to grow. Our hope is Connor will start school in April. He had the opportunity to attend Culture Night at school last evening. It was so great for him to be back in the school atmosphere and hang around many friends.  One of the highlights for Connor was seeing his current teacher, Mrs. Patterson. He was so happy to see her and embrace her with a hug!

One week down, one more to go!

Connor's first week of intense PT in Baltimore is complete. The therapist were very happy with his progress this week. His hip flexion was great. This exercise is typically done with the knee bent but since we are taking it easy on the knee, his leg remained straight. Not sure I could get my leg to extend that far.  Here is a picture of the hip extension. We received the new brace on Wednesday. The past 2 days have been a series of new adjustments. He is learning to walk with the new brace, while only placing 75% weight bearing on his Perthes side. There is just no way around it, the Scottish Rite Brace is just plain awkward. The first picture shows his leg position while in the brace, the 2nd pic is Connor learning to walk with one crutch.

We made instant friends, this week, with another family who is going through the same journey. Their son, who is the same age as Connor, just had the Ex Fix put on 3 weeks ago. They were finishing up their stay at Sinai today and heading back to NC. Connor will miss seeing his friend, Jack, but we are so happy they will be reunited with their family soon. We feel so fortunate to be blessed by more friendships on this journey.