Yesterday, Elena’s Speech Therapist was here and at the end of her session, she looked at me and said, “2013 is going to be a big year for Elena.” My eyes immediately brimmed with tears, because so much has begun to come together for our little gal. I pray so hard every day that this prediction is true. I pray that next January I can say that 2013 brought us so much progress, excitement and pride for our Laney. For now, she is making big strides and we’re so excited!
She LOVES to eat! I can’t believe I finally get to type out those words. We’ve waited so long for her to open her perfect little mouth for the spoon, to eat an ounce of food in just a couple minutes (compared to the 20 mins+ it used to take her), to actually enjoy the taste and having something in her mouth. She even was sucking on her fist yesterday during her feeding session. This all has been a HUGE accomplishment for her. Anyone who has seen the feeding routine we have practiced every single day in the last year, would be amazed at her progress. She sees her Nutritionist next week and we’re hoping, praying she will begin to drop a little bit of her g-tube feed and replace it with FOOD!
Elena is oh, so close to sitting on her own. Some days, she keeps her balance for minutes, and others just a few seconds but she’s working hard. It’s still so tough for her to keep her little head up. We continue to be encouraged by the progress she shows. They tell us that if she can sit on her own by two years old, it is a good sign prognostically.
She been such a happy girl lately. We have so much fun together. She laughs at all the silly things I do. Nothing in this world compares to Elena’s belly laugh. I never tire of it. Yesterday, I had her all strapped in to her “Tucker Sling”, turned on some music and watched her little feet tap the floor. It was so funny! She’s understanding more words, commands and games that we play. Even though she can’t communicate easily with us, she finds ways to show us that she understands. She loves when Chad or I ask her to “look at Mommy/Daddy”. We all squeal with delight when she finds our eyes.
There are two areas where Elena really continues to struggle and where improvement has been lacking. The first is her vision. Though structurally her eyes are fine, she suffers from a “Cortical Visual Impairment”. That basically means that she sees, but her brain can’t comprehend what she sees. Hence, her difficulty in looking at really anything. I often try to imagine how difficult it would be to look around a room and it only be a swash of indistinguishable color and depth. It would be horribly overwhelming. The good news is, that unlike many visual impairments, she can improve this condition. We are flying to Pittsburgh in March to see a nationally renowned CVI Specialist to learn more about Elena’s condition and what we can do to help her. We’re also fortunate we have an amazing Occupational Therapist who specializes in vision impairments. We are hopeful that one day, Elena will be able to easily look at her Mommy and Daddy and recognize us by our faces and not just our voices.
The other area of difficulty is Elena’s upper body. She is not yet batting or reaching for toys. We aren’t sure if this is a cognitive issue or just that her muscles remain very rigid and difficult to move around. Elena will be receiving her second round of Botox next week. We will need LOTS of prayers next Thursday…for Elena and for me. She’ll be getting injections in her inner thighs, pecs, biceps, thumbs and hamstrings. The injections are very time staking, tedious and painful. Last time she only had injections in one place and it was heart-wrenching. We need prayers for all of us to get through that appointment and that we will see the same amazing results that she has with her last round.
I will sometimes sit and think about my precious Elena walking, feeding herself and looking at me saying Mama. I’m realistic that these things aren’t likely to happen in 2013, 2014 or maybe even later, but in my heart, I’m determined that she will do all of those things. I think about how overwhelmed with pride and joy I will be in each of those moments. Those “firsts” are yet to come, but for now I’m just as content to see her now-toothy smile and hear her giggle when I tickle under her chin. I know her Speech Therapist was right, 2013 is going to be a GREAT year for my girl.
Thanks for your continued prayers for our family. They still mean just as much, if not more, today!