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I want to take a moment out of the normal deal world and share a bit of what’s going on in our life. I do this for two reasons, one to help any other parent that ends up having a child with same disease, and second to share how we are coping and managing changes amid the chaos.
In mid February we took my middle daughter, Mary Rose, to an orthopedic because she kept limping. She would complain of pain off and on, but the limp never went away. I went in thinking it was going to be like every other appointment we go to where the doctor tells me that we’re crazy and sends us home on Advil, but within 5 minutes I realized that this wasn’t going to be the case. Before taking x-rays he immediately said that he thought she had Legg-Calve-Perthes disease, and after x-rays he was very confident of that. Of course this is the appointment that my husband didn’t attend because nothing was supposed to be wrong… Perthes disease is where the blood supply gets turned off to the top of the femur (hip joint) and the bone starts to die. They don’t know what causes it, and they are also a little lost on how to treat it. He ordered an MRI and sent us on our way to regroup in a few weeks and figure out what to do next.
The RN in me couldn’t sit still and just wait though, so for the next 3 weeks I read everything I could find on Perthes and also realized that I wanted us to see a doctor that had a lot more experience. Perthes is tricky, there isn’t a set protocol or list of things that every doctor does. They each handle it differently and a number are part of international study groups to try to figure out what is the best way to treat cases looking at outcomes of current and past cases. Various factors can make a case more difficult and sadly one of those factors is being a girl. Hearing that it’s more common in boys and harder on girls over the age of 6 made my mama heart break as we found all this out on our 7 year old.
Searching research articles, I found an orthopedic in Atlanta GA that specializes in pediatric hip disorders and then the same day found out that he was in-network for our health insurance (pretty amazing since we don’t live in GA). I took this as a wide open door that this is where we should go. He immediately sent us for a different type of MRI that shows blood flow (first sign that the first ortho wasn’t as up on things) and we learned that Mary Rose had a bad case with 99% of the top of bone showing blood loss. Anything over 50% requires surgery… so we aren’t sitting on the fence here.
We’ve spent the last month waiting on our surgery date to arrive. M.R. has been on crutches and not bearing weight on the leg that is affected (only her left side shows signs of Perthes). Surgery itself isn’t horrible, they break the bone put in some plates and screws and send us on our way in a few days. The hard part is the next step. Mary Rose will be in a cast for 6 weeks post-surgery that covers both of her legs and holds them out at an angle with a bar in the middle. She also can’t bear weight at all for 6 weeks. This is probably a great time to also mention that I’m 35 weeks pregnant…
So, that brings you up to speed. We are 8 days away from surgery and trying to quickly gather what we will need to take care of a bed bound 7 year old. First we had to move her to the downstairs since there is no way this pregnant mama can haul her up the stairs in a cast. She’ll have to sleep alone for the first time in her life, which is what she is the most sad about… but we came up with a happy compromise. She gets a roommate that is a bit furry. The family dog that normally sleeps in the laundry room will get to be her roommate for the time she lives downstairs. He should be quite thrilled and she was ecstatic at the idea.
The room she is moving into is our office space, so I’ve been working with the help of friends to convert it temporarily to a kids bedroom. The goal was no holes in the walls or paint required. We are moving furniture out and taking deer antlers off the walls and bringing in cheer! Here’s a glimpse of the plans we gathered from Pinterest, and tomorrow I’ll reveal her new room.
Update: Many are asking if they can send cards. That was actually going to be part of the post I am writing for tomorrow… but yes I would love that and I know she will too! Feel free to send things too:
Mary Rose Martin
7001 St. Andrews Rd. #311
Columbia, SC 29212
