Sunday, October 23, 2011

Arrrg, Matey!

Levi's trip to the ophthalmologist earned him a new piece of eye wear. Yes, an eye patch. He screamed and cried straight for the first 15 mins I had him wear it. Then, he accepted that it was yet another thing he was just going to have to learn to live with. I wanted to cry with him, but I held it back. Really? Another "therapy" we are going to have to incorporate into our day.

The goal is to have him wear it 4 hours a day. The idea is that by patching the strong eye, the brain has to rely solely on the weak eye, thus putting more energy into making it be the best it can be. If not patched, the brain will slowly turn off the under-performing eye, since it doesn't want to bother sending so much energy to an organ that is not pulling it's weight. At least that's my simple explanation.

While he does great at keeping it on, he doesn't do well when he has is on. It was shocking to see how he is able to see when he has it on, or rather how he can't see. Since he can't see, he pretty much checks out on most interactions and gives up on walking or wanting to go anywhere. Instead he whines and wants to be held. Holding him is becoming more of a challenge, since his 34 pounds on top of my growing belly just doesn't feel great for long. To give him credit, I guess I would be the same way if somebody covered up the eye that was providing me vision and expected me to go on with my daily business. I do have a lot of hope for recovery, after all the brain and the eye are some of the most amazing organs and they have profound capabilities, and we have an amazing God and Healer behind it all, so we have plenty to hope for.

Dan and I are both frustrated that no sort of PT or OT has started, since we are still waiting for all the paperwork to go through. We decided today to have him start walking without his right foot brace, and that actually seemed to work wonderfully. Since he was able to bend at least one ankle he was able to scoot around on his favorite bike, which was SO fun to see. He also has taken more independent steps (when forced to), he still majorly freaks out, but when he does do it, he seems significantly stronger and stable! Yeah! One thing the doc talked about is getting botox injections in his left foot to loosen the muscles that are distorting his calf/foot. This will ideally be done at his next MRI since he will be sedated. The MRI is scheduled for the 31st, but I am still trying to coordinate the botox, which I feel like is a long shot to get coordinated beforehand. I am still hoping that something will work out. This is something to be praying for, especially since his left foot causes him a lot of discomfort and difficulty, and makes walking even more of a challenge. I feel like if he can get that foot flat, his walking would take off.

We are finally feeling a bit settled back home. The welcome home balloons met their demise today (Dan with scissors) as we tried to clear out our house a little bit and most of the bags and toys from the hospital are finally put away. I just feel so tired all the time. I keep reminding myself that this would be the same whether or not Levi went through all this. After all, what pregnant mother of 2 young children wouldn't be tired? Right? Still in the back of my mind I wonder how I will do this with an infant. I try to push those fears aside, hoping that things will be better in 4 months, but they keep cropping up.

I am also getting used to curious people checking out Levi. I know I would be curious too and would wonder what was going on with this little pirate-meets Forest Gump boy. Maybe it's just the protective mother in me that wants to protect him from judgement, or maybe it's the pride and insecurity in me that doesn't want to have a son that is not like the rest. Either way, it's an adjustment.

Photos: (Top) Levi during his initial cry fest after we started patching. Yes, his mouth is full of pumpkin bread. (Middle) Loving his new Elmo costume. My $3 score on craigslist. (Bottom) Loving playing on the tractor with all his friends, a big hit at our venture to Irvine Park Railroad.


  1. Kara, so many difficult things, but so many good things too. You are always in my prayers!

  2. I have been following you from the beginning. I am amazed by your courage and faith. Your family is in my thoughts and prayers.