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. 

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.

Post surgery updates...

The days following surgery were pretty low key. Connor did a lot of resting and relaxing. Since he is wearing a foam wedge strapped to his legs instead of his brace, he is not very mobile. We should receive his brace back tomorrow and keeping our fingers crossed that it is a good fit for him. Our first trip to PT this week consisted of a baseline of measurements. They want to see where his ROM is with the Ex Fix off. Most measurements were great, some were hindered due to his knee not being able to bend because of his femur bone. More PT updates to follow soon. 


Updates:

Connor seems to be feeling well. Amazing that all he has needed, on occasion, is Tylenol. He says his pin sites are just tender and sore to touch. Taking the adhesives off for showering was an adventure for all. The adhesives were sticking to the wounds quite a bit. However, the time frame for showering is significantly quicker. (Looking forward to a lower water bill next month ;-)). Once we soaked the adhesives in the shower, it did seem to help a bit. It is incredible to see, in 2-3 days short days, the pin sites were scabbed over. Very little oozing or bleeding. We will continue to cover the sites for the rest of this week.
He is thoroughly enjoying his belly time and wearing his regular pants again.

Post Surgery Update!

Connor's surgery went well today. Dr. Standard was VERY pleased with his hip. The X-rays showed the femoral head in a "beautiful rounded shape" (per Dr. Standard's words). He stressed that the next few months of PT are very crucial in gaining ROM (Range Of Motion) back in the hip. By doing this, it will help keep the shape looking good and healing well. The knee will continue to be stubborn at this point. Once the Dr. started to remove the pins, he noticed the lower pin, closest to the knee, was loose. This caused the pin hole in the bone to be larger. Typically, during surgery, the Surgeon will bend the knee and loosen it up to give the knee a good head start. Since his pin hole was larger and weak, there is a greater risk of breaking his femur if too much pressure is placed on it. Therefore, the surgeon did not bend his knee. Over the next few weeks, Dr. Standard advised that we, and PT, do gentle exercises with the knee and more focus on the hip's ROM. He stated that the knee will still bounce back but we need to let the femur bone heal for now, which could take 4 more wks.
 The new brace needs some minor adjustments before Connor can start to wear it. In the meantime, he has an "A" frame wedge that he lays with. He has already been able to bend over and touch his toes without pain, something he has not been able to do for 9 months.
I appreciate everyone who has reached out to us by text, email, phone calls, and fb. We appreciated your thoughts and prayers today and everyday.

Here is the first thing Connor did when he got home. Finally, lay comfortably on his stomach.

Here we go!!!

I thought it was only appropriate to post a picture of Connor the night before removal. 4 months ago, I posted a picture of Connor laying in the same position the night before his External Fixator was put on.
Before ExFix - 10/08/13:

 Night before his removal: 2/13/14:

Tomorrow is the day! Please continue to pray and keep us in your thoughts!

Ready for Removal!

Connor is officially finished with his External Fixator PT sessions. His removal is still scheduled for Friday, Feb. 14th despite the impending snowstorm. We will stay in Baltimore the night before and the night after surgery.
He seems to be ready for this chapter to come to a close. He, also, understands this next adventure is going to be another adjustment but just like before, he will fight through. His attitude and smiles continue through this process and I couldn't be more proud of how he has handled this. He had a unique experience today during PT.  We were asked if it would be ok for a new patient to come observe Connor in therapy. This patient just had an Ex Fix put on last week and was having trouble adjusting. He is the same age as Connor. When the patient arrived in PT, he was very quiet and just taking it all in. The mom had a lot of questions about our journey thus far. By the time our PT session was ending, the boy had opened up to Connor and asked him some questions. After PT, Connor and I had a chance to reflect on our own journey. It was a great reminder of how far Connor has come these past 4 months. Once we saw the boy and his mom, it brought back memories of that time for us and we could totally feel their emotions of fear and concerns. I can only hope that we could give them a little sense of peace today.

The Countdown is ON!!!

With 18 days left, we are ALL anxiously anticipating the removal of Connor's External Fixator. This has been quite the journey these past 4 months. Connor has been absolutely AMAZING throughout this journey. Scott and I are so proud of him and all that he has had to endure so far. Somehow he never complains about his situation. He just takes it in stride. He is such a daily inspiration to us.
He and I have been making a list of the simple things he will be able to do again, like wear regular pants/underwear, sleeping in his own bed, walking/running on his own, (ok, so maybe this one is a BIG one) and attending school. Isn't that what life should be about, the little things?
He has been preparing for the big day by getting fitted for his new brace, and having his pre-op physical and bloodwork done.
Some of you may be wondering about the new brace. During the removal of the Ex Fix, Dr. Standard will put the new brace on. The new brace is called a Scottish Rite Brace (google it). He will wear it for 3 months. The first 6 wks. the brace will be worn 24/7. The remaining weeks, it will be worn at night. It will be an "A" frame brace that fits around both hips. It can be removed to shower and change clothes. The brace will be worn over his clothes, so this, too, will be visible. The purpose of this brace is to "contain" the hip so healing can continue while learning to walk again. The first few weeks post operation are very intense with PT. He will have PT everyday in Baltimore for 2 wks.

Thank you so much for the continued support on texts,emails, and cards. I know this has been a huge help in encouraging Connor to keep a positive outlook during his journey with Perthes.

Hip Hip Hooray! (Pun Intended!)

Another great report from Dr. Standard. X-rays continue to show little bits of bone forming. The femoral head of the hip is even rounding, where it use to be flat from the bone deteriorating. Dr. S said Connor's hip position continues to look great. Dr. was impressed with Connor's ROM in his hip. Connor could bend to 75 degrees which is the maximum degrees with the Ex Fix on.

We even discussed about what to expect after removal.  Connor will be getting measured for his next brace (much less invasive). This brace is an external brace that is an "A" frame which will be worn on top of his clothes.  It will be worn for a good part of a 24hr period for 6 weeks. Then, onto the next chapter of this journey. We are so glad you joined us on our journey. We hope you stick around for the next chapter. Thank you so much for all the continued prayers/support, cards, texts and emails.

New Year! New Hip!

Happy New Year everyone! We hope you all had a wonderful holiday. We were very fortunate to be able to spend time with family.

 

I know I haven't been blogging lately but there hasn't been much change with Connor. He has been pretty consistant with his ROM (range of motion)and his progress since the last blog. His hip continues to reach the maximum ROM with the Ex Fix on which is 75 degrees. His knee tends to flucuate anywhere from 40-48 degrees lately. Although, it seems that his knee has regressed a bit, Dr. Standard does not seem to be concerned about it. His words were, "Our focus is the hip, the knee will come later once the Ex Fix comes off". If the Doc is fine with it, so are we! 

 

Since surgery, Connor was doing a type of muscle stimulation during his PT sessions called E-Stym. This is an electro-magnetic stimulation on the thigh/knee muscle.  Little sticky pads would be placed on his thigh muscle with electro-magnets in them which would "zap" the muscle to wake it up. Since his muscle is responding better to motion, he has graduated to another type of stimulation called A-Stym. This procedure is a deep tissue release procedure. This entails massaging cocoa butter on the thigh, followed by some deep tissue tools pressing down on his muscle to "release" it. Now, this may sound nice and relaxing but it is the opposite. This procedure is rarely complete without tears (and for me too!). It's very difficult to watch as well.  He continues to AMAZE us with his strength, perserverance, and positive attitude. We are so thankful and extremely blessed to have found this wonderful team of Dr.'s, surgical team, and therapist. We have no doubt Connor is getting the best care!

 

Now the holidays are over, we feel like the countdown is ON!!! Our removal date still stands for Feb 14th!