In the last few days, Ethan has REALLY blossomed. The night before Ethan's first birthday, he had gone down for the night, and like many nights woke up a few hours later. Eric went into his room to get him, and noticed he was sitting up in his crib. Eric was quite shocked to see this, as we had not seen Ethan sit himself up before. Then, a few weeks later, the night before his surgery, I found him sitting up in his crib. Both times he seemed a bit shocked, and not quite sure how he got there. Then, 2 days ago, Ethan and Eric were laying in bed. Ethan loves to lay with us, roll around on the bed, blow raspberries on our bellies, and just hang out. This time, Ethan was laying parallel to Eric on his tummy, he leaned in towards Eric, scooched his knees underneath himself, and slowly started scooching his feet underneath him until he was at a point where he could then just push up on his hands, and sit up. This was the first time we had seen him actually do it himself. In the last few days since then, he's done it a few dozen times. He's so proud of himself, and really gets a kick out of Daddy and I being excited for him. This seemed to really spark an interest in movement. For the last few weeks, he's been really interested in standing, and pulling up to stand. But it really seems like in the last few days, he's began to put the pieces together and is really figuring out how to do things on his own. He's also starting show a great interest in learning to crawl. Until now, he really hasn't been that interested in anything out of arms reach, but now he's quite motivated to try to move a couple feet. Because of the extensive flexibility in his hips, this requires a tremendous amount of strength in his legs, and core to compensate. But, because of the low muscle tone, his muscles don't really have the stamina to accommodate this new desire to move. He's working so hard now, and is having so much fun with it. In the last few days in particular, he's also become a lot more chatty, and is quite excited when Eric and I chat back in his language. There's a whole new fire in him, and he's now ready to start really exploring the world around him.
Two days before Christmas Ethan had an assessment done at the CDRC (Child Development and Rehab Center). This included testing from an Occupational Therapist, Physical Therapist, and Developmental Pediatrician (Dr. Peterson). The OT/PT tested Ethan's motor skills, and asked us a bunch of questions about how he moves, communicates, plays, eats... etc. Ethan tested with about a 40% delay in all areas. I asked Dr. Peterson if Ethan would be able to grow out of the delays, or if he would always be a little delayed. Dr. Peterson explained that it's not until a child is around 5 years old that you can get an idea for the extent of the delays. If Ethan is still testing around 40% delayed when he's 5, then he'll probably always be like that. For now, they're going to assess him every 4 months and track his development. They want to ensure that he doesn't fall further behind, and that when possible, he begins to bridge the gap from where he currently is to where he "should be". Dr. Peterson was also becoming a little concerned about Ethan's weight gain, or lack there of. He's actually lost about 1/2 a pound over the last few months. His weight is still normal, but his lack of growth is not normal. Because of all of the eating issues that Ethan has had, I had become a bit lazy in feeding him. Nursing is easy, and stress free for both of us, so I had been primarily nursing him. Dr. Peterson suggested that I give him at least 1 bottle of breast milk a day, and mix in 2 tsp. of dry formula. This way, Ethan would be getting more calories in the milk, without adding volume to the milk. Pumping enough milk to do this is a bit of a pain, so instead I decided to "mom up" and try to push through the feeding issues. Instead of worrying so much about what I thought Ethan should be eating, I catered to giving him food that I know he likes. It got him into a good rhythm and he's beginning to eat much better. He's still not at all interested in table food, but he's eating purees well, and I'm fine with that. This appointment really brought me a lot of peace. Until then, I had been judging myself as a mother based on Ethan's development. This helped me to really see that Ethan is developing at his own pace, and that his pace doesn't reflect my efforts. One of my biggest concerns about his slow development is fear that it was a sign of an underlying issue. For now, I've become at peace with not knowing. I've become to take each day as it comes, to encourage him to do what he can do, and not what I think he should be doing. I feel like all of his medical issues have really taken a lot of joy out of being his mom, and just enjoying him for who he is. This new found peace has really enabled me to really just enjoy playing with Ethan, and meeting him where he is.
Unfortunately, we left our camera at grandma's over Christmas, so we don't have any new pictures. Hopefully soon.
If you get a chance, please check out this blog about Scarlett. Brandi, Scarlett's mom, has an amazing attitude, and has done a great job of chronicling this excrutiating journey. http://brandiandchris.blogspot.com/2010_12_01_archive.html