A Bunch of Updates!

Here comes a big dump of information on what we've been up to! I added updates and pictures from the last month and a half. Sorry I haven't updated in awhile, things were so chaotic around the holidays, followed by an extremely busy January. We had a great Christmas, with a few days spent in Ohio, followed by a snowski trip to Denver with all the kids, Bran's parents and Seth & Mary Ann. I figured I'd better get this blog updated because we are headed to New York on Saturday for three days of therapy with Marcy, and I'm sure I'll have some good things to report!

Lucas is doing great, so far a very mild winter (knock wood) with only one bad cold/cough that came with a fever, but it was short-lived. His speech is really coming along, naming and mimicking EVERYTHING! His newest thing is answering you, "oh yeah," which cracks us up in the right context. He's ripping off the alphabet by himself now and can count to ten... well almost, his version goes "one, two, three, four, nine, ten!"

I can't wait for him to start school in April, I just know his language is really going to take off. He is finally starting to identify with people and use their names...not just with Mommy and Daddy, but with the kids and other familiar people. He calls each one of the kids by name without prompting now and the other night Bran had his Mom on speaker and just from hearing her voice across the room he yelled, "G!", and immediately followed it with "G-Gan" for GranDan, because he knew they went together. Pretty cool... just more things that are quite impressive for a kid with a brain injury!

One big change to note... at almost 3, Lucas hasn't been able to isolate or point with his first finger (like all kids do around 6-9 months). If he points to his body parts, its with all the fingers together. Its been frustrating, I've been working with him to isolate it, and asked the therapist why he doesn't do it like all the other kids I see. Part of it is fine motor skills delay, but it is more due to his vision issues. If you can't see past a few feet or if images are distorted, then pointing is really pointless (no pun intended). If you think about it, pointing and asking "what's that?" is a very visually-driven exercise. Our vision therapist said that some kids with CVI will be really late, or some never do it. Ok... so the other night, Bran and I were sitting at dinner talking about Lucas starting to name people, but he hasn't said the word, "Daddy" as much as others...so I said "Lucas, where's Daddy?"... he turned and looked right at Bran and we smiled at his recognition. I said "Point to Daddy", thinking I would need to place his hand in the pointer position, but before I could reach over, he pointed right at Bran. Yeah! We were both surprised and so excited!

Then it just took off, he is now pointing to everything... the toy he wants, people, etc. Last week I was standing in the kitchen as he pointed to a new picture on the wall he hadn't seen before... and asked, "that?" Yippee!!! He then went on to other objects in the kitchen pointing asking me to tell him the name. I actually cried, then immediately sent an email to our vision teacher to tell her what he did (because she's the only one that really gets what a big deal this is). She was just as excited as I! Maybe its 2 years after this milestone is supposed to happen...but so what?! We get to check that one off!!

That reminds me of another day he surprised us just before Christmas. Kids with CVI have specific issues seeing 2-dimensional, so books are usually too busy causing them to look away. There are only a few books with basic pictures that he's now starting to look at. Because of this disconnect, it takes them a long time to really understand that an image can be the same thing as the object. Its a process that we have been told we have to work through over the next year (and his vision school will really help with this). We have a music book with Elmo, which Lucas is really only interested in playing the music over and over. Its a very busy pop-up book so we never really talk about the images for fear of overwhelming him. One morning before work I pulled it out to let him play the music and the first thing he says is, "Elmo!" He SAW and knew who Elmo was! It was so awesome. Bran and I looked at each other... "did you hear that?" Now we test him all the time with new pictures or on other toys, and he can point out Elmo every time. Again, it sounds basic, but it is SO not basic!!! Its major progress!

Not much to report on the motor skills side, we're still kind of stuck. We are going to be hitting it hard this year and looking at some other options. Our ABM therapist has recommended that we have him evaluated by two well respected doctors in New York... a podiatrist that makes custom orthotics, and a pediatric orthopedic surgeon. We don't think at this point that orthotics would even help him, because his issues are due more to the high tone in his hamstrings and hips that keeps him from moving forward. Surgery or equipment is not what we want, but it has become obvious that there are a few things hindering him moving forward, and we may have some options to consider. These two doctors collaborate, and will be reviewing a DVD over the next week of how Lucas moves to determine which doctor we should start with. Carla said even Anat Baniel herself sends patients from California to see these doctors, so I'm looking forward to hearing if they feel they can help him. I'll explain more on this later after we speak to him.