a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Tuesday, July 27, 2010

Legs and Eyes

Two steps forward...one step back. Currently, we're dealing with the 'one step back' in regards to Oia's mobility.

As you know, both casts were removed one week ago today. By the end of the two weeks in casts, Oia was ambulating as though she wasn't wearing them at all and was unstoppable; walking and on her feet all day. Hours after removal, same story. She was a little wobbly with the new sensation of stretched calf muscles but willing to walk and seemingly comfortable (no pain, soreness, etc.) Fast forward to one week post casts and we have an entirely different story.

The shift in situation seemed to happen around Day 2 post casts and almost overnight. Pain showed up and weakness stopped by for a visit. Bottom line...Oia is reluctant to walk and mostly refuses walking at all. Instead, she flops to the floor to crawl. Any steps at all comes after great protest on her behalf and with forceful convincing from Rob or I. At this point, we suspect the soreness is next to gone as her behavior does not convey any pain but instead she is WEAK. She can not let go of what she is leaning against to walk because when she tries to step with her left foot, the right leg collapses completely as it can not bear the weight of her body. Down she falls. The stretch has diminished any strength she had in that lower part of her right leg. Casts did exactly what they were supposed to do but at this point a stretched out, weak muscle is putting us back to square one.

Overall, I know this is still beneficial for Oia's physical development, now and in the future. However, that fact alone does not make this easy. It was exactly this time last year when Oia finally took her first, wobbly, independent steps. I remember those sweet steps as if she just took them seconds ago. Since then, Oia has spent countless, often rigorous, hours in PT to learn how to walk as well as she was just 2 weeks ago and now the girl can't stand without assistance, let alone walk. This is difficult to witness.

Time (and more PT) has a way of healing, strengthen, and making things better. So, we continue CME in therapy, push on, and pray she gets her walking legs back sooner than later. What else can we do?

And because our plate likes to remain full, we took Oia to her 4 month post-op ophthalmology appointment today in northern Va. Our appointment was a scheduled 90 minutes with dilation and as always, Oia was a saint for all of it.

Dr. P's nurse asked us if she could give Oia a brief eye exam using pictures. Using pictures to assess vision in a nearly 3 year old is certainly age appropriate. I initially thought this would work but then I was slapped in the face with reality when Oia was asked what she was looking at on the wall (which happened to be a picture of a hand print). It's only age appropriate when your child can talk. I have no doubts that Oia recognizes most pictures she see but she doesn't have the language skills to communicate what it is she's looking at. She can answer yes and no questions but not ones that begin with "what". We scrapped that vision test before it even began.

So here's the outcome of today's eye appointment...
1. Oia's eyes, from an ocular standpoint, are doing well. Good alignment, thanks to surgery. Oia's eye issues mainly stem from a neurological standpoint which is mostly beyond our control. (Thank you, cerebral palsy.)

2. Patching is helping. Dr. P thanked us for our efforts at home with the patching and asked that we continue to do as we have been.

3. Oia has bilateral cataracts (which we knew). Right eye cataract is more obvious, though still "small" and left eye cataract is "microscopic" and barely noticeable. I had to educate myself on what a cataract really is; I hear of this in older patients but now this pertains to my child and I needed the details. I learned a cataract is a cloudy or opaque area in the lens located directly behind the iris inside the eye. Normally, the lens is clear and allows light entering the eye to clearly focus an image on the retina. When cataracts develop, the light rays become scattered as they pass through the cloudy lens and the retinal image becomes blurred and distorted. Not a wonderful thing for someone with vision issues already.

Dr. P said more than likely Oia was born with these. The fact that these cataracts are still quite small, haven't worsened, and do not impede her vision too much at this point means we will simply continue to monitor them; not operate to remove them. As I understand, the goal is to keep Oia's lenses has healthy as possible and at this point surgery would not be worth the intense eye therapy that would have to ensue post cataract surgery.

So, we will keep up with the patching and we will keep a very close eye on the cataracts by following up with Dr. P in 4 months. It's just one more thing to pray for, one more thing to worry about, yet somehow still one more circumstance that leaves me counting my blessings. Despite all, Oia can still see the world she lives in through those sweet, blue eyes of hers...cataracts and all.

Lord, if you're out there...please keep it that way.


  1. Wow, you have been busy!

    Luckily Oia has a good therapist to work with and it sounds like she has a great eye doctor.

    Best of all, she has two wonderful parents! Keep on keeping on...

  2. my heart hurts for you and Oia. It is so hard to watch your child struggle but it always amazes me at how strong our children are. Landon and I pray for Oia each night before we go to bed. Know that God is out there and that he loves our children as much as we do....even more.

  3. You guys have definitely had a lot on your plates. Oia will get her strength back in her cute little legs, and you'll be chasing her everywhere, once again. I can't imagine how frusterating it is for you to watch her not able to use the beautiful gift she has of walking.
    You'll be in our thoughts and our prayers.

  4. Oh Mo, I am so sorry this is not smoother sailing after all that uplifting walking with the casts. She is going to really and start flying about again, you know she will after she recuperates, and it is excellent news that your patching regimen has been on target. We are thinking about you guys, and sending good wishes.