Sunday, March 17, 2013


Thursday, March 14th, Adam and I took Addie to Dell Children's for a day surgery appointment for Botox injection in her eye. Thankfully they do this under general anesthesia and the Botox injection itself doesn't burn. Win win!

She was really excited to find a 'chair' her size in the waiting room.

She had a lot of fun going around and around the nurses desk.

Playing with toys while we waited for an OR. Love our Children's hospital!!

All done and a little hungover from anesthesia. We had to keep her upright for six hours post op. Which was  fun!

Botox is pretty well known as a treatment for crow's feet and forehead creases. Everything I knew about it pre-hydrocephalus diagnosis I learned from Sex and the City ;). I had heard/read about Botox being used to treat spastic muscles in kids with cerebral palsy before. In fact, Addie's neuro has mentioned it as a possibility in Addie's future for her left ankle/Achilles area if it continues to tighten as she gets older. However, I had never heard of it being used for kids with strabismus (learn more here ). Who knew! 

Addie has gone through a myriad of eye diagnoses since we first started going to her ophthalmologist when she was just six months old. The importance of getting this diagnosis right is to figure out how to straighten her eyes. Some cases are surgical, some require glasses, etc. In cases of strabismus (lazy eye or crossed eye), it's important to get both eyes working together to not only improve vision but to prevent her weaker eye from being shut off by her brain. 

Addison most likely sees in double... or somehow not 'normal'. We don't know. She can't tell us and as our doctor pointed out she doesn't know she sees differently. So we've been going every four to six weeks since last February to monitor her eyes and try all kinds of tricks! 

At her last appointment, we finally settled on a diagnosis.  The best way I know how to explain it is - the eyes have a lot of muscles around them working to pull the eye in all directions. The nerves that control the eye muscles wiggle all through the brain. Different brain damage in different areas causes different eye issues. With Addison, we are pretty sure she has multiple areas of her brain that are damaged and/or displaced with fluid. So she has more than one issue with her eye muscles. We treated the turning in with patching and glasses and dilating drops to encourage her to use her 'weaker' eye. And this helped to an extent. But once we could tell her eye was no longer crossing in, we were able to see that her eye was also not able to look out, past midline. So for example, her right eye  would try to uncross and it couldn't go past the middle of her gaze to her right side. Sometimes it even looked like her left eye was crossing in, when really it was her right eye that couldn't turn out to keep them aligned. Sixth nerve palsy (learn more here) is what it's called when you can't turn your eye out past midline. The muscle in the corner of her eye (medial rectus in the image below) was contracted and physically restricting her eye from turning out. 

The first line of treatment for this is Botox injection. Addie's ophthalmologist pulled the muscle out of her eye with forceps and injected the Botox straight into the muscle to relax it. Just like Botox relaxes wrinkles. The hope is that Addie will now be able to move her eye on her own, turning it out toward her right and stretching it out so that it won't form another contracture. One of the first questions I asked her doctor was will we have to do this multiple times. In kids with CP, they use Botox to relax the tightening tendons, etc. to allow them more flexibility. But in some cases of CP, once the Botox wears off, the muscles develop contractures again because of the neuro spasticity caused from the cerebral palsy. Apparently, with the eyes it's different. It's a one time damage to the nerve and not an ongoing central nervous issue. 

It is entirely possible, however, that we may only achieve partial correction with the Botox. We may have to try Botox again, or we may eventually have to do surgery on the muscles in her eyes. So far, I am pleasantly surprised in the difference it has made in her eye alignment. Dr. R told us it would take up to two weeks to notice any change.

I took this picture for comparison last night, two days post op -

I thought it looked much better already so I went back through my photo roll and found a picture I had taken on January 26th.

Check this out

The important thing to notice is that in both pictures she's looking to her right. That's when we have noticed it the most in the past.

Pretty crazy right?! 

We are super excited to see what this will do for Addie!! We see Dr. R on March 27th for post op follow up. Should be interesting to hear what she says!! 

I'm already noticing that she's studying things differently. Almost like she's seeing them for the first time. I am thrilled to see what doors this opens for our Addie!!! 

Wednesday, March 6, 2013

Guest blogging about our last Disney trip!

I had the privilege of guest blogging over at Violet Imperfection today! Leslie, Violet's mom and the writer at Violet Imperfection, is a friend of mine that I met many years ago on the DISBoards (an online bulletin board of Disney planners and fans). We actually accidentally bumped into each other in person at Disney Hollywood Studios back in 2010! It was kind of funny!! We were eating at Mama Melrose's and she and another DISboard friend of mine, Jen, were seated at the table next to us! We recognized each other from the pictures we had shared on the boards and were like "aren't you....?" LOL

She is doing Disney Week on her blog this week and asked me to share our story from Addie's first seizure. Please go read all about it and make sure to enter her giveaway for an awesome Dooney and Bourke Disney inspired wristlet while you are there! 

Go check it out!!
Violet Imperfection