Lucas James Stisher

We spent a day at Butlers Orchard with Lucas to take in the fall season and get pumpkins. This may sound silly, but it ended up being one of those days that will be one of the most memorable and cherished because it was finally something we got to do with Lucas that actually felt "normal." We always strive to do things as a normal family, but the hard truth is that Lucas doesn't engage or understand things like other kids his age. Then add in that he is not mobile, things like this just aren't meaningful to him. We do them for Nick, Abby, and Anna... but when it is just Lucas, we often don't go because he hasn't been able to enjoy it. Honestly, its been painful for me to see pictures of friends' two and three year olds running around at places like this... truly enjoying the activities.

This year we couldn't coordinate schedules to take the kids, so we were just going to skip it this year. I kept thinking, why put myself through the disappointment and watching the other kids from the sidelines. But after a lot of discussion, and back and forth, we finally said, "lets do it."

First was the pony rides... Lucas has been doing hippotherapy, right? He can do this! I was so excited to hold him on that pony as he concentrated really hard on balancing. Then we moved to playing in the corn... he loved it! For some reason, dumping and throwing corn is hysterical! In a perfect world, he would have been standing there like all the other kids, but we made it work as I held him up to the table. Bran and I kept smiling at each other as we watched him actually enjoy it. We continued through the activities... little slides, big slides, throwing straw, eating apple cider donuts (that Lucas loved)... fully taking in what it meant to us to see him having fun with these typical things.

So that should explain why there are so many pictures... it was just a good, good day.

Disclaimer: There aren't supposed to be so many pictures of me. Bran had the camera most of the time.

Little John Wayne

Playing in the corn

We even rode the tractor!

Going down the big slide with Daddy... he LOVED it!

Playing in the straw

One of my favorite pictures

Hayride to the pumpkin patch

Little punkin

On the plane and ready to go!

October was a very busy month, starting with a week in California to the Anat Baniel Center in San Francisco. For over a year we'd been wanting to schedule this, so we finally made the investment and took the plunge. We had 10 sessions scheduled (2x a day for 5 days)... 3 of the sessions were with Anat herself, and the others with the highest level practitioners. It was amazing watching them work with him, you can definitely see a difference in the approach of the various practitioners we work with, and how some are just able to get more results. When we saw Anat mid-week, she was very pleased with how he felt and the progress he made in her sessions. For the first time ever, we saw him arch his lower back while on all 4's, which is a critical movement for fluidity and crawling. She also did a lot of work with his left arm and his increased range of motion was clearly visible after the sessions.

Unfortunately we were only able to complete 8 of our 10 sessions because one was canceled due to the practitioner's child getting sick, and the other was canceled because Lucas woke up having a seizures. He ended up having a few in a row, called a "cluster," but luckily they stopped completely after about an hour. It was pretty scary being so far away from our doctors, and we didn't want to go to the ER if we could avoid it. I was able to reach our neurologist by phone and she said that clusters can happen but the important thing is that they stopped. Our neurologist also said that getting calls for seizures from families while out of town is a common occurrence... she made a joke that Disney calls come often! Children get exhausted from being off schedule, not sleeping well, etc., and it can bring on a seizure. Over stimulation and increased brain activity can also cause them. I think Lucas had the perfect storm... trouble with the time change and lack of sleep coupled with so much activity going on in his brain with the therapy (which is a good thing that the brain is active and making connections). This happened the morning after his intense session with Anat.

The week ended well though... we were able to get all of our sessions in with Anat, and left there with a renewed sense of hope that we could actually get Lucas to walk one day. It may be a longer road, but I have no doubt this is the best method for him to learn the proper building blocks of movement. We were also able to fit in a little sight seeing while in California... with a beach sunset, and a walk over the Golden Gate Bridge. After we returned, Lucas started propping on is left arm to play, and was finally able to get himself in and out of sitting with no assistance! If only we lived closer to the ABM center, I think we'd be a lot further along. I met a girl in the lobby one day with her 3 month old son who had moved there the day before from Kansas City, because she learned that Anat is the best in the world. After her son suffered a traumatic brain injury, her family decided to move there to give her son the best chance.

Upon returning from CA, we had a follow up appointment with Dr. Roman in Pittsburgh, PA. Its always good to see her and her positive vibes. She was thrilled with Lucas' progress over the past 9 months and increased him on her CVI scale from a 7 to an 8 or 9. She said it his progress over the past 18 months going from a 5 to an 8 or 9 is remarkable. She said this does not mean we can relax though... that this only means he is in a higher stage and we actually have to step up our work with him and the right stimulation he needs for learning. She wants us to work on getting him to recognize salient features (like a cat has triangle ears and whiskers, or Sally in the Cat in the Hat book always has a red bow in her hair). We know he's very good at memorizing an image but he relies on that too much. He needs to learn to "look" for certain features in an image or object in order to recognize what it is. Sounds like a simple concept, but it has been challenging for him, especially if it is a small detail for him to notice. We are diligently working on describing these things to him. She said this is the primary determinant on whether he will be able to differentiate between letters and eventually read. So... the pressure and the work is on. Again, I am SO grateful he is in a special school for the visually impaired, because they will be focusing on these things as well, in his daily activities.

Lucas impressed Dr. Roman with his ability to recognize more complex images this time and early stages of sorting. She challenged him with recognizing simple images (like a toothbrush on a sink), then moving it to a more complex picture with other images to see if he could still find the toothbrush. He got about half way through the exercise, then could no longer find the toothbrush because the images were too busy and distracting. So we still have a lot of work to do. She had him playing with an iPad during the appointment too... so cute. She raved about the number of great toddler games that he can play that will help him with his attention to finite details and hand/eye coordination. Or... was she just helping justify my desire to get an iPad? :-) Either way, it was really cute watching him play with it!

I have to comment about my conversation with Dr. Roman about the Anat Baniel Method. I told her about our recent trip to CA and how he'd improved over the last year in his fluidity and movement (which she noticed right away). She said there are several kids she sees with CVI that also do ABM and she recognizes that those particular children are all doing very well "overall". Since ABM focuses on the brain making new connections, it is helping the child holistically, in multiple areas. I absolutely believe it is contributing to his vision improvement, and she concurred.

Lastly, in October, we had our first visit with an Endocronologist at the National Institute of Health (NIH). We were referred by our pediatrician a few months ago because he felt Lucas wasn't gaining enough weight or increased height. It is common for brain injuries to damage the pituitary function within the brain. The doctor looked at Lucas' recent MRI, but since it was taken for the shunt, it didn't have the right view to see the pituitary. He said he may have one repeated (a specific endocrine MRI) in several months if he wants to take a closer look. Right now, he's choosing to wait and see how Lucas develops over the next six months. Lucas had bloodwork done at the pediatrician's office and the Endocronologist said he was comfortable with all the levels except for one... but that particular one is not enough for him to say he has this issue going on. He wants us to repeat a weight check in 3 months, and then 6 months... and he will decide at that time if we need to do extra blood tests and the MRI. He also wants us to see his nutritionist to count calories for a few weeks, but I believe calorie intake is not our issue. We've become old pros at pumping high calorie foods in him and he's a good eater... so I'm not sure what is going on. I pray it is not an endocrine issue and that hormone shots are not necessary, and that maybe it is just preemie related slow growth, or high metabolism like his parents both have. We go back in January for our next weight check and visit with the nutritionist.

Made it to San Francisco!