Neurology Follow-Up

On January 29 (the Friday before we left for New York) we saw our Neurologist, which had been a year since the last visit. To remind everyone, she was the one that gave us the bad news of the bleed when Lucas was in the NICU, and the one who gave us the bleak future. I love going to see her! She was soooo excited to see Lucas and he did awesome at all her "tests". Everything she'd ask him, it was like we'd rehearsed the answers with him because he'd answer every one perfectly. I honestly don't think she expected him to actually "reply" to half her questions. My favorite one was when she said "how old are you now Lucas?"... but she was saying it more to herself as she searched for his birthdate on her paperwork. As plain as day he answered her, "two!" She laughed, the look on her face was priceless. Bran and I were smiling ear to ear. I have to give my typical disclaimer again here... yes, these are very typical 2 year old things to do (and he doesn't yet have as much comprehension or language than his 2 year old peers)... to be quite blunt, there was a day that she thought he'd be institutionalized. You have to put it into perspective. The fact that he was sitting there understanding her, answering questions, and building blocks on her table and laughing as he knocked them down... its just pretty remarkable.

The best part of the appointment was when she pulled up his recent MRI. She said, "I see why he is doing so well." She could see the development of myelin sheath (which is what surrounds the nerves, aka connections, within the brain). I know, its a lot to understand, now I wish I had paid more attention in my high school biology classes! She said they look to be developing normally and connections are being made properly in most of the brain! She said the level of connections that she can see "suggests a typical 2 year old brain." Wow! It was cool to hear someone actually confirm this fact with a brain scan... not measuring his progress by milestones and "should-be's" ... but cold, hard, indisputable data of seeing connections in the MRI! I love it! She said, "of course the area on the right will always be gone and will continue to cause challenges, but I'm so pleased that there is so much healthy activity occurring in the rest." She said she can also see that the area in the back of the brain with the damage from the stroke is slower to make connections, but she sees that they are starting to happen. She feels this is why his vision has improved so much over this past year.

She ended the appointment by saying, "its obvious that as his parents you are doing so much for him, for him to be improving like this... so congratulations." That was nice to hear. I know that it is not entirely us, it has a lot to do with his wonderful nanny, his nutrition, stimulation from the kids, and all the therapies he receives... but it is nice to hear validation that the decisions you make as a parent may have been the right ones. There isn't a day that goes by that I don't question if I'm doing the right things or doing enough to give him the most opportunity.

ABC's

We're back from our trip to New York for three days of therapy and our consult with the orthopedic surgeon... lots to report, so check back in the next couple days. In the meantime, here's little peanut showing off doing his ABC's!

And here he is doing it again and counting, but getting distracted halfway through!

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.