Today we have an appointment with a developmental optician. We are literally hoping she solves all of Kelsey’s problems to date in one fell swoop. Not really…kind of… Let me take you back a bit to let you catch up.
Kelsey had strabismus surgery on April 4, 2014, one month (and a couple days) shy of her first birthday. For Kelsey, strabismus means that her eyes turn in towards her nose or “cross.” We first noticed this problem after her first shunt malfunctioned and was replaced in September, 2014. Within a month’s time she had two more brain surgeries (four total, if you’re counting) and her eye crossing was significantly.
By five months old, Kelsey was prescribed glasses and an eye patch. She was to be patched four hours a day. That’s a post (or ten) for another day, but for now I’ll tell you while this direction from our pediatric ophthalmologist (PO) seemed hard (impossible!), it wasn’t as hard as what would follow the surgery on April 4th.
Before surgery, Kelsey was our “easy” baby. Clearly in our family, “easy” is ALL KINDS OF RELATIVE (in utero stroke and hydrocephalus, emergency c-section, NICU, four brain surgeries in five months), but truly, she was easy. She was calm. She was happy. She was easy to please. She slept. She ate. She smiled and laughed…on time, I’ll have you know. While rolling, sitting and crawling came later than the norm, she did them within good limits…especially considering she was five weeks early.
As for her vision, her PO says that she likely had double vision as the eyes began to cross, but being so young, she probably ignored the second image her right eye was projecting. So, she only used her left eye to see. Instead of seeing with binocular vision (two eyes), she saw the world with one. And apparently it was working for her.
And then she had eye surgery. Dave and I very frequently remember commenting during a long wait in pre-op that “of course Kelsey is as calm as a cucumber!” He and I were on edge, getting antsy and frustrated, and just wanted it over. At almost ten months, Kelsey had not eaten or drank anything since the night before but just happily sat in our laps, played with a toy or two, snoozed in her stroller and didn’t seem to know or care what all the fuss was about. This was the baby we knew. What we expected would happen. She was, after all, a hospital pro!
The surgery itself was very quick. It worked, the doctor assured us, and all was well. We could go home. Patching and possible follow-up surgeries might be in our future, but hopefully this would fix the cross. And that’s all it was fixing. Basically, in my opinion, it was cosmetic surgery. Which for this completely self-conscious mom who is definitely overcoming childhood trauma of being teased for her appearance, appearance matters. So if this would fix something that might become a future reason-to-be-teased, great!!
In the days and weeks to follow, Kelsey’s eyes were definitely straighter. But that was the only thing that was “better.” It took us a little while to realize (about 9 months), but our daughter became a new baby on April 4, 2014. What first seemed like coming-off-the anesthesia-fussiness…turned into “maybe she’s disoriented because she can’t see the same way anymore”…to a general dismay that our daughter was now difficult, high-maintenance, and hard-to-please.
By her first birthday, we were getting worried. And shortly after her party where she spent most of the day sleeping, throwing up all over her room, and generally crying throughout the hoopla, we took her to John’s Hopkins ER to see what was wrong. We were relieved, but confused, to find out that Kelsey’s shunt was functioning fine and an MRI showed her brain was developing normally. During her first few days of life, we were told it would be easy to tell when there was a problem with the shunt. She would be irritable, lethargic and fussy. Yep, yep and yep. We would end up going back to JHH again in October for similar concerns. Another X-ray and MRI…nothing. Everything was “fine.”
But it wasn’t. She was almost 18 months and she wasn’t walking. Wasn’t talking. Not a word. She wasn’t gesturing. She didn’t point or wave bye-bye. She really didn’t like to play. She did like to explore and had started crawling around 13 months. But she had stopped pulling-to-stand (she started around 11 months).
And then we went back to the ophthalmologist in November, 2014. At this visit, we learned that the sight in Kelsey’s right eye had declined dramatically. By the way, at this point she wouldn’t keep her glasses or eye patch on to save her life (or mine!). And we admittedly gave up. Fighting the constant, daily crankiness, whining and clinging was enough…reapplying a band-aid-like sticky patch to a toddler’s eye was too much. And to cut my mom-guilt a bit, the doctor was so laid-back about it all that it never seemed like a big deal. “Hahaha, yep, those toddlers are fiesty,” he would say.
But, I’m sure, once we can get past all this, I will beat myself up for not being more dedicated to our patching assignment. We’ll see.
Anyway, back to the November eye visit. Kelsey would need a new glasses prescription. This one would be much stronger. Her right eye wasn’t good. Her left was great, though. And, again the funny doc said, “Well, at least she has a spare!” He wasn’t quite as flippant as I’m making him out to seem, but he did convey that Kelsey seemed to be one more patient in his stack, instead of a serious matter. We should try our best, but he understood if she wouldn’t coopperate. We shared with the doctor that Kelsey’s mood and behavior had severely declined since the strabismus surgery in April. He made no connection or affirmation that this could be true. We also said she was 18 months and not walking. We asked if the two could be related? Nope! How about the fact that she tilts her head to the left (remember, her good eye’s side)? Could this be related to her vision? Nope! “Likely related to the hydrocephalus.” (We contacted our neurosurgeon…it’s not).
So we left, discouraged that things were getting worse, not better. But my ever-optimist husband made me feel better, as he always does after a doctor’s appointment for our kids. I remember sending him a text after we had parted ways for the day, that said, “Par for the course!” And he replied something to the effect of, “Nah! A bogie, maybe!!” He thought it was a good visit. That things could be fixed. She would be able to compensate. All would be ok. He’s a keeper.
Then Kelsey got her new specs. This time we went for the Miraflex brand. They are a pliable plastic/rubber-like material. Virtually indestructible. I was against these for her first pair a year ago, because they looked so…I don’t know…special. The back strap behind the head…I don’t know. I didn’t like it. Well, like every apparatus my kids have gained to help them succeed, I have learned to LOVE her Miraflexes. Again, worthy of a different post.
The “burgundy pink” glasses changed her. For the better. For a month. In October, when we got the new glasses, I swore she wouldn’t keep them on, but this time I was committed. We had no choice. She had to wear them. Her right eye was so bad. I couldn’t give up. I wouldn’t. And whatdyaknow!?! She kept them on!!! Day one was tough. But by day two, she kept them on…most of the time. And a week later, guess what!?! She pulled to stand. Yup! A milestone she gained and lost months ago, came back!!! And, her mood improved immensely. She wasn’t back-to-her-old-self, but she was happy (enough).
About a month went by. We went to a check-up with our neurosurgeon to brag about her new mood and new glasses. We told the pediatrician and anyone who would listen. Things were better. Developmentally, not much progressed, but she was exploring her world all over again, and her crawling was getting very strong. She started to let go of furniture and attempted to cruise a little.
And then we started patching again. At first she kept the patch on. And then she didn’t. So we were given a piece of scotch tape-like film that covered the glass lens of the good eye (to make the weak eye work harder and force it to see). This way her glasses and patch were an all-in-one deal. But…then she started to rip the glasses off. Over and over and over and over again. And again. And for another couple weeks, okay probably a month (Christmas!), we gave up. This girl was tough. Tougher than me in many ways.
The changes in Kelsey this time were subtle. But winter came…snow came…Christmas passed…and the blues set in. For everyone. After a very particularly hard day at home, after her weekly physical therapy visit, I had a melt-down. Dave was out of town (coming home that night), and I turned to the internet for help. I found another mom-blogger. And what she said about her daughter rang true for Kelsey in SO many ways. Side note–I really do think that Moms could both save and rule the world. Oh wait! We already do!
Dave had been saying for months that everything changed when Kelsey had strabismus surgery. She was happy. And then she wasn’t. It took me longer to see this but we do believe it to be true. All of the changes in our daughter for the better or worse mood and development-wise can be traced back to vision.
Glasses with patching-decline
Glasses without patching-better
Currently, we are giving Kelsey Atropine. It’s an eye drop administered three times a week, on consecutive days to her “good” eye. It’s like a patch she can’t take out. For 24 hours, three days in a row, every week. And, guess what!? It dilates her eye for almost a week after the drop. So the poor girl is walking, ‘er crawling, around dilated all week. And as you can imagine, this has made her mood and development decline. WE NEED HELP!
So. Back to the whole reason for this post. Today we are going to see a developmental optician. This is the description of the doctor’s specialty:
“… provides comprehensive vision care as well as vision rehabilitation and vision therapy to patients of all ages, including pediatrics and geriatrics. She helps patients to improve their visual functioning and quality of life with non-surgical correction of vision problems that impact reading comprehension, learning, sports, and job performance.
As a neuro-developmental optometrist, the doctor specializes in diagnosing and treating binocular (two-eyed) vision disorders including convergence insufficiency, amblyopia (lazy eye) and strabismus. She also specializes in diagnosing and treating visual problems related to congenital and acquired brain disorders.”
As you can see, we’re hoping she can solve all our problems. Thanks for hoping this for us to. Hope has gotten me through some dark days. It’s a powerful drug. Stay tuned for a full report…