Two wheelchairs, three walkers, two sets of crutches, three Scottish Rite braces, one abduction brace, five abduction pillows and two wheelchair ramps – that’s what you accumulate after six years of living with Legg-Calve Perthes. We have enough medical device equipment to start our own retirement home but it’s not for the elderly; it’s for our 12-year old son. It’s a dream that we haven’t awaken from yet.
This last time was the roughest for the entire family. We were doing great in the Perthes Triathlon and we could see the finish line – it was in clear sight. Then, this crippling condition disqualified us and we had to go back to the starting line. Christopher’s little brother prays every night to be able to play soccer, football and basketball with his big brother again. We know Christopher will be healed but it’s in HIS time not ours.
Counting the Weeks
We made it through the two weeks, 2 – 4 more weeks to go. Christopher is king of the house. He has taken over the downstairs master bedroom since February. It’s been impossible to make the 18 steps to his room and we hope he can return back upstairs by the end of the year. Dr. Standard is changing his brace to a one leg brace with a hip extension and AFO. It’s important for Christopher’s knee to pointing up to the ceiling. We’ll be glad to be rid of the monstrosity of brace he currently wears.
April is the month when his left hip started to sublux. We know that now. His foot had started to turn inwards and it was more than likely the cause for the foot fracture. Dr. Standard said he was shocked his hip had subluxed at 6 months because it typically happens within the first three months. I have no idea how Christopher handled physical therapy because some days it was really tough. We just thought it was the rehab part but looking back we think about how his leg would be so swollen – that was 4 months out. That was the hip coming out of socket. I wished we would have figured it out back over the summer but it wasn’t meant to be. We cannot look back anymore, just straight forward at the task at hand. It’s time to continue to work and truly walk.
No More Chances
From this point one, we’ll make the trip to Baltimore for everything. Unfortunately, we tried to handle everything with the counsel of Dr. Standard so far away. The foot situation was a prime example of what can go wrong when your physician is miles away. Christopher doesn’t have a 3″ limb length difference. It was hip clenching up. He never needed the AFO with a lift. It was always his hip; not the foot.
Friends for Life
Alice and Tanner came to see us while in the hospital a couple of weeks ago. It’s great to see the boys picking up where they last left off. They understand each other without saying a word.
Noah made sure to FaceTime Christopher while in the hospital. It was cute to hear their conversations and it was a great distraction from being in the hospital so far from home.
This journey may be tough and long but the friends we make along the way are for life!
Save-A-Limb Ride (October 19, 2013)
Our next follow-up visit with Dr. Standard is on October 17th. This was supposed to be the final follow-up appointment with the head splitting osteotomy. Now, it will be a follow-up for the head splitting and the Zip Tight – two for the price of one! We purposely planned around the Save-A-Limb bike ride.
Christopher has once again joined team ‘Perthes Awareness’. If you would like to help Christopher make a difference, please make a donation in honor of him for his team ‘Perthes Awareness’ at the Save-A-Limb ride.