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.