Saturday, June 22, 2013

Marching along …

I know, I know, I’m terrible at this blog thing. It’s unfortunately low on my priority list until friends start inquiring about an update and I make a blatant request on Facebook to help keep me on my blogging toes … so thank you all for continuing to follow us on this journey!

My last entry was mid-February, so I’m going to try to write a recap for each month I’ve missed over the next few days … then hopefully we won’t end up with too much of my rambling and keep it a bit more interesting!

After our successful swallow study in February, Jennah began oral/feeding therapy. It was a slow start, but she has progressed well since then and enjoys vanilla or honey yogurt, and LOVES graham crackers!  She smiles at the smell of graham crackers and likes the <crunch!> sound when she manages to bite down. It might seem surprising that we would feed her graham crackers, but they actually dissolve quite quickly. She also likes tomato and red pepper soup! She still struggles a bit with thinner liquids like water, but she manages to cough and protect her lungs well.

At the end of February, we went for a visit with ophthalmology. Jennah has been exhibiting behavior that seems like she is able to see more. However, the ophthalmology visit was scheduled to last nearly 3 hours and we were excused after the first hour. We know she has cortical vision impairment, but we kept hoping that maybe something would be triggered or rewired. Unfortunately, this is not going to happen … Jennah is, and will continue to be, blind. She is simply incapable of learning how to see since that part of the brain (the occipital lobe) has been severely damaged. There is actually some research going on about correcting this dysfunction, but it’s not going to happen anytime soon. The doctor was very apologetic , but I’m really OK with it. It was disappointing, of course … we want everything for our sweet Jennah, but we can’t have everything. It’s not a loss because she never had it. As one of my very wise friends said, she’s made leaps and bounds this year … vision just isn’t one of those leaps! So we’ve moved on … it’s not that we’ll ignore her vision altogether, it’s just not something we’re going to focus on or take time out from her strengths to work on.

Speaking of strengths, I was becoming physically weak. Jennah has really grown  these past few months and measured overBWike 3 ft. long and 40+ pounds. When I carry her, she’ll either be limp like a bag of rice, or do the dancing robot. My neck and shoulders were constantly in pain … I was getting tired and depressed. At the end of February, I decided to join the gym and purchased the WIKE, which is a trailer/stroller/jogger for kids with special needs. It has been awesome. I dare say that I feel and look great! I am determined to take Jennah wherever I can, whenever I can. I’ve started running, weight-lifting, and doing a lot of yoga. I dream of running a half marathon with Jennah some day. But for now, I will train and build strength. I need to stay strong for her, physically and mentally. So in March, I ran my first race, the 4-mile Seattle St. Pat’s Dash…liberating.


  1. I'm so happy that you've found something for YOU! You're an amazing mom, Sariya. It's clear you love your children by the sacrifices you make for them and the joy you share with each of their successes! Love you, friend!!

  2. I love the idea of you running with Jennah!! That will be so wonderful for both of you!! You truly are amazing and I look up to you more than you will ever know!!