Audrey's Haircut

This is old news, but I want to capture it to remember it...

One positive side effect of having a child with disabilities is that it gives one a better perspective on life. I've learned to prioritize problems, and am less likely to become upset about small setbacks.

Hmm... Or not...

Audrey Anna was born with more hair than any of our other children. It also began to grow the soonest, and she could have ponytails at an earlier age than the other girls. It is not thick, but not too thin, and lays nicely straight so, when it is combed, it looks nice. She once cut the front of it such that I had to taper the front and cut a few inches off the back to even it out, but, at age three, it was still halfway down her back and (in my mind) beautiful. I actually loved to comb it and loved having a child with long hair at a relatively young age. I loved it more than I thought I would. I imagined her being one of those five or six-year-olds with pretty hair nearly to her waist. Again, I had never been one to prize hair (just look at all the pictures of my girls with messy, uncombed and undone hair for easy evidence), but with Audrey it was surprisingly different.


You already know what happened if you read the title of this post and noted the past tense references in my last paragraph.

At the end of July (like I said, this is an old post, but obviously the event had a lot of meaning to me since I am taking the time to write about it over three months later!), Audrey was dancing around our family room with her sisters and her aunt, an accomplished dancer. Her hair was flying out above her dress as she twirled around. There was nothing unusual about her disappearing for a few minutes (really not long).

When she returned, she commenced dancing. Almost instantly, I noticed that her hair was not flying out in quite the same way as before. To my horror, I noticed some short hair among her long tresses. I whisked her upstairs, and like some kind of horror film gone bad, we encountered pile after pile of long hair. In the privacy of my bathroom, I combed her hair to further assess the damage, and the comb pulled out more clumps of beautifully long hair.

In only a few minutes, Audrey had cut some of her bangs nearly to the root, a BIG piece in the back just above her hairline, and some on the side at about the ear level. I cried and cried in front of her and was shocked by my emotion. In the back of my mind, I was thinking, "This really is not that big of a deal. I have learned about perspective. I should not be getting this angry about this." In real life, I was very angry at Audrey and threw at her the most hurtful thing I could think of to say to her: "You are not a princess anymore." She tried to reassure me, "Mommy, it will grow back," but only I realized how long that would take. Later, I discovered that she was trying to look like a picture of Jolie that hangs in the hallway upstairs. Claire had dressed her in a dress that had been Jolie's. Jolie was wearing that dress and had a bob haircut in the photo.

I didn't take a picture of Audrey's damaged hair, but here is a picture of her shortly after I took her to a hair salon to "fix" the hair:

I have to admit that, as it has grown out a bit, it actually looks quite cute. We both miss her long hair, but below is a picture from a couple of months ago. It is even cuter now as her bangs are a great length.

My takeaway lesson from all of this is that I haven't learned much!

Another Diagnosis

In September, we took Sophia to an opthalmologist. The last time she saw an opthalmologist, she was 4 months old, still small, and home for just a couple of months. At that time, the visit's purpose was an ROP follow-up to make sure that she still showed no signs of retinopathy of prematurity. We also expressed to the doctor our concern that she didn't seem to be seeing and tracking. The doctor seemed rushed, and didn't explain things to us to our satisfaction, but we recall him telling us that both babies' eyes looked good, and that Sophia might have CVI (which is a vision impairment due to the brain not correctly processing what the eyes see). It was this doctor who made the referral to the neurologist, who subsequently diagnosed Sophia's PVL, cerebellum atrophy, CP, and CVI. The neurologist told us that there was no point to taking her back to the opthalmologist since she couldn't see much of anything.

Jumping ahead to last spring, when Sophia began to reach for and track objects held close to her eyes, the developmental pediatrician she sees twice a year recommended we take her to an opthalmologist again since she was seeing more. The thought was that perhaps something should be done for her crossed eyes (to improve binocular vision) since her vision was improving. So, I made the appointment with a different opthalmologist and waited with building anticipation for months for it to come.

I expected that we would leave the appointment with a plan to address her strabismus (in her case, crossed eyes). I thought we would either be told to patch her eye(s) for a certain number of hours per day, or she would have a prescription for glasses, or she would be scheduled for corrective surgery. I hoped for the surgical option, since that would straighten out her eyes and, I hoped, help her vision. I was extremely optimistic about his appointment.

Instead, we left the doctor's office with a new diagnosis. Sophia has severe optic nerve hypoplasia (ONH). This means that her optic nerve didn't develop properly. She has only about 15% of what she should (sounds kind of like the cerebellum diagnosis, huh?). The doctor said she may have CVI too, given her neurologic history (= brain damage), but that her ONH is severe enough to singularly account for her visual status. The icing on the cake is that this condition often also affects the pituitary and growth. This is called SOD, and we need to have her tested for that.

Although it doesn't matter, I don't understand why both the first opthalmologist and the neurologist missed this. Was the opthalmologist just pretending to look in her eyes? Was the MRI image so poor that the optic nerves looked normal? However, this diagnosis does answer some oddities that CVI didn't seem to explain. Sophia's light sensitivity was not typical to CVI, but people with ONH sometimes have sensitivity to light. Her CVI had seemed worse in relation to her physical impairments than it should have, according to a doctor she saw last year. So some "mysteries" have been explained.

This diagnosis didn't change Sophia's vision. She is the same cute, smiley little girl she was before the appointment. However, what it did was change my hope. With CVI, I had hope that her vision would continue to improve as her brain learned to better process the images it receives. I dared to hope that she might be able to learn to read, at least in large print. I hoped that she would be able to navigate safely through space. I hoped... We still don't know exactly what she sees since she can't tell us, but now those hopes are gone. Her brain doesn't receive all the visual signals that it should. The optic nerve can't be healed or regrown (though there has been some promising research in mice, so perhaps someday...). It is finally, heartbreakingly, accurate to say that my baby is blind.