These were all words we were told at our Pediatric Orthopedic appointment yesterday.
Our amazing surgeon, Dr. Beale recently referred us to an orthopedic surgeon, as he just wanted to follow up on Harlow's legs and make sure everything was okay. Her skin and tissue expansion went perfectly and her leg is fully healed and looks amazing. Our Doctor did have some concerns about her mobility and range of motion on her left leg and foot and sent us to be assessed, just to be certain that Harlow was on the right track. He told us it would most likely be recommended that we do stretches with her and maybe do a little physical therapy. As you know, Harlow is missing a big chunk of her left heel and therefore sometimes walks on her toes with her left foot. We have slowly been working with her and encouraging her to consciously walk flat footed and help aide her in stretching and flexing that foot.
The Orthopedic doctor took X-rays of both of her legs/feet and with the new technology, we were able to view those images almost immediately. The physician began by showing us what a "normal" 3 year old's legs/feet should look like. Then he showed us what our daughter's look like. I'm not an x ray expert, nor am I a doctor, but although it seemed slight, there were differences. Especially on her left leg. I believe at one point he referred to it as her "sicker" leg.
He went on to say that with her "deformities" her ankles and legs could be more fragile. Deformities. Wow, that was a term we hadn't heard before and it immediately stung. Scars, sure, but deformities? I know there are far worse things than that and I'm also aware that so many parents have children who live with life changing deformities, but in that moment it was just me and my baby. And it hurt. He told us that by looking at the X-rays, he can see that her joints and legs were very sick when she was. Basically that when she was dying, they were too. She recovered, thank God, but they didn't. Even her right leg that looks almost totally normal now, with a few scars, is abnormal underneath.
We asked if we could fix it. Could she go into surgery, break her bones and repair the issues? Could he shave or shape her bones to make them normal? The answer was somewhat vague. Maybe. Maybe they can one day. I know how sick and near death my baby was. I will never forget that. I guess I just never thought that her bones and joints would still be "sick".
As of now, the plan is for our surgeon and this new Orthopedic surgeon to talk and make a plan. I don't think any immediate surgery is needed...thank goodness, but eventually the two docs may go in together and rebuild her heel and look at her bones and joints.
He told us to continue working on the walking and stretches and if we want, we can start some physical therapy. However, he mentioned that at three years old, it's more likely she will do better with us. So that's our plan. We will take this news with a grain of salt. We will continue to work with her and make her the best that she can possibly be.
So when we left and my eyes were a bit watery, I made myself stop and look for that silver lining. Here's what I found...
Her deformities are so small and insignificant compared to many other children out there
We are so lucky she still has limbs
There is always the chance that as she grows, her legs will improve and there are possible procedures to help.
She can still sign up for soccer and dance and do all the activities that normal toddlers do.
She doesn't know the difference between her normal and other people's normal.
But the best silver lining is most definitely that we aren't speaking about my precious baby in the past tense. Nothing is lost. No one is saying, "well, Harlow was just so sick that if she had of lived, she would have some complications".
She did live. She is here and we are so thankful for that. After all the horrific tragedies that occurred in Orlando this past week, it is all that matters. With all those parents who have to bury their babies. Old and young. We are so lucky to have this sassy, stubborn, always talking back, favorite person in the world still with us.
Normal is boring.
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